Updates

We will give you the whole story then try to update you every day regardless of how small the setback or victory.

(the most recent updates will be at the top, scroll to see past updates)

April 24, 2025

Today is the 2 month marker of Mom leaving us. How did the time go so fast and yet so slow? We think about her every damn day. And miss her so damn much.

Last Saturday was more perfect than we can put into words. So many of you showed up for Mom's Celebration of Life and we can't thank you enough. The stories, the smiles, the hugs - it was all so soul healing. And exactly what she would have loved. And I know she was there with us. 

As Dad said - when you part ways with anyone you love, be sure you give them a big bear hug and tell them how much they mean to you. Life is too short and love is so plentiful - be sure to share it with everyone any chance you can get.

We will love you and miss you Mom. Forever.

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We won't be updating this blog anymore, but will be keeping it open for all that may want to revisit our journey. Thank you all for supporting us along the way. ♥️

April 16, 2025

Many folks have asked if there are any places to donate in Mom's name. Although nothing has been officially set up, we've chosen the 2 organizations below to point people to. These, of course, are just suggestions. Please donate however and where ever you can. 

https://www.iremshrine.org/

https://streetartsocietynepa.org/ 

Thank you all for your love and support. We hope to see you this Saturday. ♥️ 

Feb 24, 2025

"So....when ya leaving?" - Linda Johnson (at the very moment anyone arrived anywhere)

Today at 11:56am, Linda / Lin / Mrs. Johnson / Mom / Noni left us.  We said goodbye surrounding her with as much love as humanly possible.

Dad, Mom's sister (Aunt) Barb and her husband (Uncle) Dave, Jen, Rob and Katherine, and I held her hands, rubbed her feet, stroked her hair and did everything we could think to usher her into her next journey sweetly and comfortably. 

Mom's sister (Aunt) Helen, her brother (Uncle) John, his wife (Aunt) Sue, and Mom's longtime friend and coworker, Wayne all called to speak to her in her final hours today.

(Mom was also visited by her nieces Amy and Marion on Saturday, and her niece Jill, nephew Seth, great niece, Morgan and the man that was responsible for introducing Mom and Dad - Tommy Gunshannon and his daughter, Amy on Sunday.)

The Drs and nurses at Temple University Hospital were so knowledgeable, kind, loving, and respectful throughout Mom's stay at the hospital. They made one of the most painful things we have ever had to do, be a little bit less painful. With their guidance, we knew she would be safe and cared for as she left us. 

Thank you all for reaching out. So many of you are so acutely aware (from moving through this or a similar heartbreaking experience yourself) of the helplessness we have felt as we have navigated this. Your messages of love and strength are keeping us going.

This is not how this story was supposed to end. But Mom never did play by the rules. She forged her own way. And we love her endlessly for it. Forever.

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There will be a Celebration of Life for Mom on Saturday, April 19th at the Eastern Star Hall in Dallas PA. We will send more details soon, but please save the date to celebrate the brightest star in the sky - our girl, Linda.

Feb 21, 2025

We don't really have any words. But know it needs to be said: 

We've made the incredibly difficult decision to put Mom into hospice care on Sunday or Monday. Because she isn't stable enough to be transported, this will be at Temple University Hospital in Philadelphia.

Due to continuous surmounting complications and Mom being unable to improve her mental status since her last surgery, the doctors see no way forward to get Mom back to us.

We know you all care very much but please do not inundate us with calls.  Please leave a message in the link above and we'll answer when we can.

We will let you all know when we schedule the Celebration of Life to honor Mom.

Love you all so much. 

Feb 20, 2025

This morning we sat and read to Mom more. Lots of eye movements and eyebrow raises. Aunt Helen sent a video message rooting Mom on, so we played that for her. That got some eyebrow raises too!

I talked to the dr that did the bronch yesterday. He said that on the CT they saw that the right lung is still not looking awesome. And they started suctioning with the chest tube again (they had stopped since it wasn’t releasing much, so they thought it might have been sorted) This should help pull fluid from around the lung. He said there is still a lot of mucus so they did another bronch today as well. 

We talked about the length of time it's taking for her to come out of the sedation. He urged us to talk to her, play music that is familiar, engage with her. I asked if we can like scare her alert with loud claps. And he said honestly try anything to build those pathways again. I told him that when I told mom about the lung surgery she gave a surprised face and that has happened every time I have mentioned it. Since I was kind of thinking I could "scare" her awake. (I know cruel, but I am trying everything) He said that new information / anything different could shock her … he talked about how Drs know the science part of the brain, but they "know more about the universe than they know about the human brain." - so it's still kind of a guessing game when it comes to the brain completely. GREAT! 😭

 The one nurse Mom liked (the hunky nurse) was her nurse today and I SWEAR when he called her name her eyes got big. So we were trying to get him to talk to her a bunch too.  Katherine also sent audio of the girls playing so I will play that for her tomorrow. 

Jen drove back to Philly tonight, so she'll be here too while we try to navigate the next part of Mom's journey.

Time for bed. Love you all! ♥️

Feb 19, 2025

Hi all,

This one is going to be short as it's been a long day and we're all so tired. 

Mom got dialysis today and another bronch to remove secretions again. From the nurse we learned that she was negative for COVID, flu, TB, cdiff, mersa. Nothing growing in the lab yet from the blood cultures they took yesterday. Doesn't mean there won't be something, but as of now, nothing. She is on 3 different antibiotics for the fungal infection. 2 new ones today, one she was on yesterday. Her eyes were open when we went in to see her. And she moved her eyebrows. 

I talked to the respiratory therapist who did the breathing trial with her yesterday. Had a question for him since the RT from last night was a little flippant when I expressed happiness with the breathing trial. He said that it was def a step in the right direction. Esp for her first time. He wasn't comfortable doing another trial after dialysis since Mom was so tired.

Rob called and spoke to Mom a bit and then Edie grabbed the phone. Mom seemed to perk up a bit when she heard Edie Beads voice. So sweet.

Dad and I ended the night reading a book to Mom. I'm sure my dulcet tones helped her have sweet dreams. 

Off to bed for me. Love to everyone. Send all that good strength to Mom. She needs it. 

Feb 18, 2025

Oooph! Today has been a long one. Besides driving back from Beaumont, I was also back to working remotely while here, so it's been a slog. But enough about me! It's time for what you all came for - MOM NEWS!

We have some BIG wins: She was definitely reacting to us today!! Eyes wide open and lots of eyebrow movement. She even wiggled her toes on request! Dad said that she seemed to look towards the Dr as she was speaking! 

I was telling Mom that Jen and I drove through Giant's Despair yesterday on the way from Philadelphia to Beaumont and I said that Dad let us know that if it weren't for that place he would have never met Mom. She reacted to that story with big eyes and eyebrow lifts! Dad also showed a picture of Rob sitting bed side with Mom from when he was here last week, and her eyebrows again went up. (of course... her favorite! 😝)

Respiratory also came by today and he tested her breathing on her own. He was giving her an hour to see how she did - she made it 50 minutes and was wiped! He said that was a solid job for the first time. Tomorrow they are going to try again before dialysis 🤞🏼

Results from the EEG only showed that her reactions were slow, which Is typical after sedation. So nothing to show stroke etc. PHEW!

And now for the not so big wins: Another Dr came by to take blood cultures because she had a fever last night and this morning and has needed more pressers all day to keep her blood pressure up, so they are concerned she has a different / new infection. So now she is getting more antibiotics. The doctor seemed happy that she was waking up (and was happy when she saw her yawning) but said that we are definitely not out of the woods yet. She was concerned that she needs more support. (pressers, antibiotics, vent, etc) They are hoping that the cultures they take will tell them what is going on and the new antibiotic will help her. The Dr said that instead of just throwing the kitchen sink at her, they are throwing the whole kitchen, to figure out what's affecting her. 

Another new twist - she has a fungal infection in her lungs and they are giving her another antibiotic for it. 🫁🍄 Most likely caused by all the bronchs (or so the Dr said)

We were discussing what they need to see in order to consider taking her off intubation. They said they would need to see that she can follow commands easily and right now the reaction time is too slow. But at least we have something to work toward. 

That's all I have for now. Overall it was a positive day. It was so good to see her react to us again. Just have to keep reminding ourselves that it's a slow process. One day at a time! One hour at a time! 

We are all just so ready to have her back to her sassy self. Let's all continue to be her biggest cheerleaders. The goal is forward movement - no matter how long it takes. ❤️

Feb 17, 2025

We all just got back to Beaumont a bit ago. This morning we checked on Mom to see how she did overnight. And to let her know we would see her tomorrow. Although she was still asleep, it seemed like she was starting to wake up a little more. Unfortunately she will have another bronchoscopy today which will sedate her again. UGH. She’s on and off pressers but they’re hoping to just get her on the midadrin. No vent changes. And she has dialysis today.

She also got her CT scan and we are waiting to hear about the results. 

Feb 16, 2025

When we got in this morning, one of the doctors that assisted the lobectomy said that Mom's chest tube hasn’t been draining. So they are going to try and fix it. The chest X-ray this am didn’t look great. Looks like the remaining lobe on the right side isn’t fully expanding, so they need to figure out what’s going on. Dr Erkman said she was ok with the respiratory team going in to do a brunch today to see if she is blocked up and maybe that’s the issue. She’s still on minimal vent, so they know it isn’t effecting anything else, but they don’t like what it looks like.

She went back on 1 of the Levo / pressers, BP at 71. And everything else looks good. She still isn’t awake and continues to do some movement. And her eyes seem to twitch now and then. They will do the EEG probably tomorrow. We asked about continued dialysis versus the every other day which she is getting now and the nurse mentioned they only really do that when they can’t tolerate the more aggressive dialysis. And she is tolerating the aggressive dialysis just fine.

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We are out in the waiting room now while they do the bronch - Before we left her room, we talked to the ICU doctor that is performing the bronch. They are doing it at bedside. In his mind, there are 2 possible scenarios of why it isn’t inflating / draining:

1 - if the issue is on the outside of the lobe / lung - Do they need a bigger chest drainage tube, do they need another one, or is the current one kinked.

2 - if the issue is inside the lobe / lung - is there a build up of mucus? is there a block preventing the vent to inflate the lobe? 

Once they figure out which it is, they can intervene. I asked if it was the 2nd, are we concerned that this has happened before…he said they have ways to break up mucus (albuterol treatments, etc).

Should know more / how it went in about a half hour. 

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They suctioned out a lot of stuff with the bronch. So that may have been what was causing the lobe to not inflate. They just took an x-ray to see how things are doing now, so will wait to hear from them on what that showed. They may still do a CAT scan depending on what the x-ray shows. The drainage tube seems to be working now, so they must have fixed what was leaking there as well. Hopefully both of these things help her overall status.

When they did the bronch, they had to sedate her a bit more, so that might delay her waking up. Sigh. But apparently she was moving around a bit right before it was happening.  

Nurse Ashley was also telling me about one of the numbers on the ventilator that shows that she is actually taking some of her own breaths. They have it set to 20 and it is consistently (except for when she is in a deep sleep) at 23 or 24.

Not sure if all this extra information is helpful, or giving us all just enough information to be dangerous. I'M A DOCTOR NOW 🤪 

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Dad and I just left the hospital a bit ago (at 8:05 or so) and Mom was still asleep. They will be doing a CAT scan overnight. So hopefully we will know more by the time we roll in tomorrow. Jen, Dad, and I will be headed to Beaumont after checking in with Mom and the nurses / drs tomorrow morning.  Dad and I will head back to Philly on Tuesday. We'll let you know once we have any updates. ❤️ Keep sending Mom your energy! We know she is feeling it! Go Mom GO!

Feb 15, 2025

Here's our midday report for today:

They did the CAT Scan this morning and it didn’t show anything of concern. Her numbers look great and she is actually off all pressers. They’ll do labs again tomorrow. 

Jen spoke to the ICU doc and they said she is taking long to wake up due to all the meds and stuff. She just still needs time for everything to breakdown and leave her body.  He’s asking respiratory to wean her a little bit more on the vent. In her MyChart we saw that they had weaned her from 50% to 40% and the PEEP from 8 to 5. Dr Google told me this was a good thing. Only the cardio thoracic team can make the decision to change from tube to trach. When we talked to the surgeon yesterday, she said she doesn't want anyone but herself touching Mom's respiratory system. She's very protective of our girl.

They are going to do an EEG at some point.  Jen thinks she saw Mom have a pain response but she's not certain and Dad thinks she made a sad face sort of.

We've been annoying her consistently to try and get her to wake up. We've told her we would gladly take slaps from her to get us to shut up, as long as she was the one administering said slaps.

More when we know more. ♥️

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Nothing really new to update tonight. We left the hospital earlier than usual since Dad is crazy congested and we're all feeling super run down. Time to take an early night to try and rest up so we are there for Mom once she wakes up again. Hopefully that's soon! 

When we were saying goodbye to her, I swear I saw her grimace. She definitely seemed to move her eyelids a bit more as the day went on. 🤞🏼🤞🏼🤞🏼🤞🏼

We saw another family in the ICU dealing with some painful news tonight. It was heartbreaking and it made me so thankful Mom has been fighting so hard. Hug your loved ones. Tell them you love them. Don't let a day go by that you don't tell them how much they mean to you. Love you all. ❤️

Feb 14, 2025

Figured that a lot of you would be wondering about how Mom fared over the night, so here's a mid day update:

She looks good and has lost a lot of the after surgery bloat (which is a thing we didn't realized happened, but makes sense) They took her off all sedation drugs at midnight last night but she hasn't woken up yet. They aren't worried as she is super sensitive to sedation, and due to her kidney failure / need for dialysis, her body might be holding on to the sedation drugs longer than normal. We should be used to this. Nothing about this whole rollercoaster has been normal. They are going to do a cat scan of her brain at some point - just to be on the safe side. She responds to stimulus and wiggled her toes. Her labs and numbers look good. And she isn't on a huge about of blood pressure meds and she isn't losing blood, which they were worried about. So she has those positives.

She's on dialysis now so we are in the waiting room. 

Will update when we know more.

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Here's our night update on Mom:

After dialysis, we went back and got an update from the nurse on duty at that time (this was around 5pm.) Her labs still looked great and hemoglobin was holding steady. She was still not awake but she was wiggling her toes even more and the nurse said she opened her eyes a little bit more. (she also grimaced when the nurse removed a bandage) We didn't get to see the eyes opening officially, but Rob and I (Jess) both felt like we saw some eye movement. 

They took off 3 liters of fluid during dialysis and her BP was great (84) and levo was at 2.(it was the same when we left at 830pm) The nurse didn't want to lower it and rock the boat. They still plan on doing the cat scan tonight or tomorrow am.

The nurse on night duty was a man that knew Mom from 2 weeks ago. He said that he liked her more sassy, like she was before..so we told him to work at waking her up to get that attitude back. Katherine and the girls (Pearl, Grace and Edie) called Mom and gave her some words of encouragement... And sang Lady Gaga. Can't believe that didn't wake her up. Sure went straight into the center of my brain.

Rob and I worked hard to annoying Mom enough to wake her up. Pretty sure she stayed asleep to make us go away. Rob flies back to Austin tomorrow, so hopefully Mom will be awake to see him off. All fingers and toes crossed please.

Love to all and hope you had a great Valentine's day. 🩷

Feb 13, 2025

AFTER SURGERY UPDATE

We just spoke to Dr Erkman, the surgeon that performed Mom's lobectomy. Due to the significant amount of surface bleeding, they needed to remove her lower and mid lobe on her right side. During surgery, she unfortunately lost quite a bit of blood and the clotting was not where they wanted it to be, so she received multiple blood products. 

They are still closing Mom's surgery site but Dr Erkman believes that the surgery went well and they accomplished what they needed. However she is very guarded about what the  next 12 hours will hold. This is where Mom needs to fight even harder. Her body will need to do a lot of the healing, although they will be giving her supportive care. She isn't out of the woods yet. She will continue to be sedated and intubated while she gets over the initial surgery shock. This could be for up to a week.

We asked what success would look like overnight - she said she hopes Mom won't need more blood products due to continuous bleeding elsewhere. And they will want to see Mom's other vitals maintain. 

We will update you when we know more. 

Please send all the strength you can to Mom. She is going to need it. We know she is a fighter, and she is really being put to the test.

Feb 13, 2025

IMPORTANT UPDATE

Mom is getting surgery today (instead of next week) on her lung. She is scheduled for 10am EST. Please send everything you've got - all the prayers, vibes, thoughts, energy, strength, magic - to her today. She's going to need it. 

We'll update you when we know more.

Love to all. ❤️

Feb 11, 2025

Where to begin...

Yesterday I was informed that Mom/Linda's treatment to stop the bleeding in her lungs was not working, so now the only option left is surgery.  The plan would be to do a lobectomy first and if it didn't stop the bleeding, they would need to take all the lobes on the right side.  It's going to be a pretty high risk surgery, so I called Dad/Bob to have him come down as I thought it was too big of a decision to make without him.  Then I called my sibs to give them the option of coming in as we were going to have a discussion with the doctors regarding surgery the next day (today.) Both Rob and Jess flew in this morning. Aunt Dottie also postponed her trip to Florida to be here.

First we had a discussion with the palliative care, medical, and ICU teams.  They wanted to make sure we understood what was happening so far and helped us put together some questions to ask the surgical team.  Later on, a senior surgical fellow with two other doctors came to speak with us and lay the surgery all out for us.  It was confirmed Mom/Linda would have about a 50/50 chance of survival due to her current state and her comorbidities, additional medical issues.  Once he was sure what the decision was - to have the surgery - he stated he would inform the surgeon and she would make a call. Then she would speak with us sometime next week.

Mom/Linda was starting to come off sedation but there was a setback last night so we found her sedated again this morning.  She has remained intubated since last week. The doctors will collect more information/data and continue to monitor the bleeding in her lungs.  

We kindly ask to keep the prayers, good vibes, etc. coming her way.  And we hope she'll be back to recovery so she can finally come home.  

If you need anything specific, please email me at jen.johnson1028@gmail.com as we might turn her phone off.  And, if you know someone who doesn't have this information, please pass it along.  I've already called one person back from Mom's phone after they left two voice messages.

Thank you everyone.  Our love goes out to you all.  ❤️❤️❤️❤️❤️

Feb 8, 2025

Hello Everyone,  Jennifer here in Philly with Mom.  I've been here since late afternoon Thursday.  Dad showed me the ropes then headed back home for an appointment Friday morning.

Mom had two more bronchoscopies and each time the bleed was still bleeding when they deflated the balloon which is compressing the bleed.  Today, they are giving her a break and will do another one tomorrow to see how she is.  I won't lie surgery has been brought up as something that might need to be done.  Monday, when the other doctors are back and they have the results from the bronchoscopy, they will discuss about the way forward.

Currently, Mom has been taken off the fentanyl and is now only on propofol to keep her lightly sedated so she isn't too uncomfortable.  Her norepi was taken off to see if she doesn't need it anymore due to her BP being "normal" for the past few days.  She is still intubated but hoping the trach will be put back in soon.

I'll send another update Monday.  Stay safe out there with all the crazy weather happening.  ❤️

Feb 4, 2025

Dad is back with Mom in Philly and hopefully I'll be heading down soon.  Tomorrow's doctors appt will tell.  

Mom had a procedure yesterday to take out the blood clot in her lungs.  Today they checked on it and the bleeding is slowing down.  She is still intubated and under sedation and having dialysis soon.

I'll have another update for your in a few days.  Love to all.

Feb 2, 2025

Dad came home today for laundry and recharge.  Mom is under sedation until her broncoscopy tomorrow afternoonish.  Dad will head back down later in the morning and Dottie will be there too to see Mom after she gets out of the procedure.  Unfortunately, I'm unable to go yet as my right knee decided to blow up on me.  Hopefully, it will be better soon.  Take care everyone.

Jan 31, 2025

Hello all - 

I'm at the airport waiting for my flight out. ooooeee it's been a week. I know we are ALL ready to be off this rollercoaster. Especially Mom. 

The update - Aunt Dottie came to visit! Since ICU only allows 2 at a time, we took turns visiting with her. She did PT and then transitioned to sitting in the chair for the next little bit. Her energy is definitely lower than the last time PT was in. 

We talked to Dr Salerno. when he did his rounds this morning and he updated us on the bronch procedure last night (since we had no answers after it happened - I'm sure you can imagine how anxious we were) He told us the bronch team couldn't do anything with the mass because her trach hole is too small. So he is going to talk to the them to see if they can get her on the schedule for Monday. And he'll talk to the anesthesiologist about what makes more sense - opening up the trach hole to be bigger to accommodate the tools they need, or take it out completely and go through her mouth (then replace the trach after the procedure). Besides the mass, there was bleeding coming from the other side of the lungs as well, so when they are in there next week, they will check that out and see what they can fix. He still thinks the mass is just a blood clot, either way they will send a sample to the labs. 

She is off dialysis today and her legs are puffy. Talked to the kidney Dr and she will go back on tomorrow. She is off the IV pressers and on oral ones. So they want to make sure she can handle dialysis without IV pressers. If she can, they will probably move her out of ICU this weekend. I asked him if he has seen people come back from this much dialysis. He said it is rare. And that a big side affect to heart surgery unfortunately is kidney failure. He mentioned there are dialysis machines we can have at home. We are going to research those for sure. (If anyone has experience with them in recent years, please reach out.) This would be for long term. Once she is out of here, she will be headed back to rehab to get her strength back and get the trach out. Then we can start discussing getting at home care. I can't wait for her to get home. I know we are all looking forward to it. 

Aunt Dottie drove me to the airport (THANK YOU!) and Dad is staying in Philadelphia until Monday when Jen will swap out for Mom hangs. (Dad has several appointments next week, so unfortunately won't be able to come see Mom. Thanks Jen for keeping her company!

Love you all. Keep those good thoughts and strong energy headed to Mom. ❤️

Jan 29, 2025

Hi all,

Sorry for the late update. It's been a looooong day. Dad and I kept saying that we couldn't believe how tired we were all day today. ...even after getting decent sleep last night. ooooph. 

Before we went to see Mom, we stopped by AristaCare to grab some of her stuff. They actually told us we should take everything since they could guarantee a bed, but not necessarily her same room. So we got all her stuff PLUS picked up a bunch of cards that people sent. THANK YOU! Dad went through them with her when we got to the hospital. ❤️

When we got to the hospital after AristaCare, Mom was off the norepi presser! Woo! But her BP was being finicky so they were going to keep monitoring. ...Throughout the day they did have to put it back on, but by the time we left, she was off of it and they removed the bag from the room. So hopefully that means she won't be turning back! That's one barrier down to leave ICU!

She was also back on the trach collar and off the vent. Woo! Hopefully she can get the cap on tomorrow so she can talk. 🤞🏼

All day we were waiting for when she could get the bronchoscopy. It was supposed to be this morning 🙄 but we know how that goes. When Dad and I returned after a late lunch, she was gone. We assumed for the bronchoscopy - WRONG. But they did change the PICC and dialysis lines. So 2 down, one to go. They are going to schedule the bronchoscopy for tomorrow. 3rd times a charm? 🍀

Other big news - she was taken off of dialysis and won't go back on until tomorrow or the next day. She is on a dialysis holiday! When they do hook her back up, it will be on a different machine and she will start to get dialysis every other day...or back to MWF. 

She was also visited by PT! They got her in the chair and up to stand. She walked about 2 steps but then due to an unforeseen hiccup, we had to postpone a walk for another day.  

We're all really happy with her progress today. Right now the only thing keeping her from heading back to AristaCare / step down is the bronchoscopy. Barring anything alarming that they find with that (and again, they don't think anything will show up, but better safe than sorry) she can move back to rehab in the next few days.🥳

When we left, she was fast asleep. Snoring up a storm. She had a big day.

YAY MOM! 💞

Jan 28, 2025

Hi all. Dad and I just got back to the airbnb a bit ago after a long day at the hospital. There was a calico kitty right outside the door trying to get in, but we didn't let them. Although I bet they would have been nice to cuddle with. It's cold!

Today was a lot of sitting around and waiting...and a lot of talking to doctors. It's amazing how many doctors come to see her. When we first got there she was ultra nervous and we heard from about 4 people (nurses, techs, Drs) that she was VERY concerned about where we were. It was just after 9. visiting hours start at 9. sigh. But we both understood since the other day WAS scary and she just needed to be reassured. She was definitely better by the time we left tonight.

We found out that they wouldn't be doing the bronchoscopy because the OR was jammed today. But that she would be on the schedule for tomorrow (before we left, they said it would be done at 8 or 9am - we shall see.....) Again Dr Salerno reassured us that he wasn't worried about the mass and so we shouldn't worry about the delay. So she went back on the feeding tube / supplemental nutrition. He also asked that PT come to get her sitting up / start working on getting her strength back - so he put in orders for that - unfortunately she wasn't able to get PT since he didn't make it to her room today. but hopefully tomorrow. 

Dr Salerno also mentioned that he would be happy with her going on the trach collar with cap today. (ie - getting off the vent) Wooohoo! (the cap didn't end up happening) but she did get the trach collar put on about mid day. and they were going to only have her on the vent tonight. With the hope that starting tomorrow she would only be on the trach collar and be able to talk. Funny / gross story - when they were putting the trach collar on her, she was coughing quite a bit and it got a bit blocked while they were suctioning the cough. The respiratory tech went to go grab a new trach tube and for a second Mom could talk! We were all like "it's a miracle!" but then the RT said "no, it's just blood and phlegm clogging the tube so causing a makeshift cap on the trach!" 🤢 🤮 But also COOL!

Blood pressure news - When we came in, her bp meds were down to 4 (from 8 yesterday) but after a while the nurse (Jamie) thought it was a bit too aggressive, so she went back to 7.  Throughout the day they kept monitoring it and lowering it ...by the time we left she was down to 3! woo! 

We chatted with the Dialysis Dr (nephrologist) and she said Mom was looking good and she felt it was time to give her a "dialysis holiday" ...meaning she could be off the dialysis machine for a day to see how she does. it's lucky that it coincides with the bronchoscopy tomorrow. So fingers crossed she does well. She also mentioned that tomorrow they will be switching out the dialysis port and the picc line (per infectious disease Dr consult) in order to cover all bases that the bacteria is gone.

A GI Dr also swung by to say hi (just kidding, there were concerns of blood in her stool) so they were checking all that out. Mom's hemoglobin was steady, so they weren't overly concerned and with everything else she has going on, they decided to just "wait and see" how the next few days go and monitor her.

One of the Drs who saw her when she came in on Thursday told dad he was so happy to see her doing so well. She definitely looked more alert this morning and kept up great progress throughout the day today. I told her I saw that the attractive nurse was here again today and maybe we could get him to bolster her again and her eyes lit up. 🤪 Unfortunately, he didn't get the chance

Dad and I left at around 6 to go check out a few airbnbs for the next stay. The new one we found is a SUPER tiny studio, but only a block and a half away from the hospital And since only Jen and Dad will be staying solo, it seemed to fit the bill. Besides we spend most of the time here in the hospital room with Mom, so we don't need much.

After checking out the airbnbs, we went back and continued watching the Hallmark channel until Mom fell asleep.

Funny story to end today's blog entry - at one point today, Mom was frantic trying to tell a story that we thought was URGENT. Tapping her suction wand on her phone to get our attention. Asking for something to try and write on....Turns out she just really wanted us to know that the occupational therapy she did when she was at the last rehab please (before coming to the ICU) was "art classes" ...terrible shitty art classes. And she had to do them every day. She was so irate at how bad they were. We were both like, Mom - not everyone is an art teacher / amazing artist, you gotta give them a break! That was met with rolled eyes and her mouthing "so shitty" 🎨💩😂

Goodnight all. Hopefully more progress and good news tomorrow. ❤️

Jan 27, 2025

Heyooo. It's Jess back at it. Looks like Mom wanted to see me so badly she figured out a way to bring me back to the east coast...

Here we go - Early this morning (2am) Mom had blood in her trach. Which obviously was all kinds of scary. The hospital called Jen and Dad but both were sound asleep. Jen called the nurses station as soon as she realized they called and got the download and relayed it to Dad. 

Here's what we know right now: a camera was put down her trach and found "a mass" that was in the "canal" (remember I have no medical background, so a lot of these terms aren't going to be medically "sound" - that's Jen's job - I'm more your comedy kid 🤪) on the way to one of her lungs. The doctor wasn't too worried about it since it wasn't seen on the scans 3 days ago when she was brought in. But he still wants to get in there to biopsy it and remove it. He didn't give a sense of urgency since the rest of her numbers are looking good - "we can do it today or tomorrow - let's just make sure she is good to be off dialysis while we do it"...So lots of blood work and BAM her potassium levels are too high to allow her to get the procedure done today. When we left at 8pm the nurse let us know that her potassium levels have steadily decreased, so tomorrow looks good for the procedure.

While all that was going on, the infectious disease doctors were in hot pursuit of why the heck she was in there in the first place. Mom has another blood infection (they did NOT say it was sepsis) and a urinary infection. So they put her on 2 antibiotics to kick those germs to the curb. They will also be changing out her dialysis port to make sure it isn't the cause of infection / is holding on to any germs. 

They were able to lower the amount of blood pressure meds today and at first it was a bit shaky but the latter part of today she was able to hold strong to a great BP number. Hopefully that still continues and they can lower the meds even more tomorrow. Before all this "mass" nonsense happened they were also aiming to get her back off the vent and on the trach collar. - and get her voice back! - but alas, we are now aiming for later tomorrow for that. If all goes as planned - FOR THE LOVE OF GOD PLEASE GIVE THIS WOMAN A BREAK - she will have the procedure tomorrow morning first thing and then can sleep through the sedation fog and late afternoon she can get the trach collar and red or purple cap back on to speak.🤞🏼

And now for the comedy relief: at one point this afternoon, Mom needed to be repositioned and her regular nurse was busy so they sent in this other nurse who was suuuper beefcake handsome / buff. Mom kept giving me eyes and I was like chill. He was very sweet and was so lovely to Mom making sure she was super comfortable. Honestly I think it was the only time she has been bolstered by a nurse that she hasn't winced in pain. A bit later while she was getting an EKG, Dad and I were out of her room and he was like "I'm glad that other nurse wasn't doing the EKG or the results would have been WAY OFF. - did you see your mom's face when he was moving her?! At least we know she is still aware." 🤣🤣🤣🤣  Later we were telling the story to the regular nurse Brittany and Mom just mouthed "he was so big!" 💪 We all had a great laugh. His name is Ben and apparently he does a lot of hair flips when his hair isn't in a ponytail. 

Anyway, I am obviously getting delirious. It was a long day. Hopefully more updates and good news tomorrow.

Love you all. 

Jan 25, 2025

Dad/Bob had to go to Philly Thursday due to Mom/Linda being taken to Temple University Hospital.  Today she is more alert than she's been in a few days.  Dad is home now but going back down tomorrow after church.  I'll be staying home as there are only so many people allowed in the ICU and my sister, Jess, will be heading to Philly for the for a couple days.  

We will try to make sure to update you as much as we can.  Thank you for your understanding and patience.  ❤️

Jan 20, 2025

I, Bob, went to see Linda over the weekend, Jennifer staying home because of joint pain and an ailing kitty.

Linda was in good spirits and we were visited by the lung Dr who said that she is doing well and may have the Trach taken out in a week or so!

We beat connection both Saturday and Sunday though Sunday's we used almost all the chances.

Linda chased me home around noon on Sunday as the weather was turning nasty.

Sorry that this update isn't longer but this is quite the slow and steady part of her recovery.  Thank you all for your questions and prayers.  

Hopefully this week will be full of Physical Therapy and good food for her to bulk up on.

Jan 12, 2025

Hello Everyone!  This evening we (Dad/Bob and I/Jen) got back from Philly.  Mom/Linda is in her new facility to get even stronger for coming home.  Since her transfer happened at the end of the week, there was no therapy.  Tomorrow she should be starting everything.  

As previously mentioned, she is in Arista Care at East End which is in around the northeast side of Philly.  It was pretty easy to find on the map.  She is in room 735.  We won't be able to see her again until this coming weekend but we do have a short phone conference with her social worker and the staff.

If anything changes, we will try to remember to blog.  If you can go see her, that would be great!  Thank you and have a good week.

Jan 8, 2025

Friday morning Mom/Linda will be transported to AristaCare in Philadelphia.  She will come home eventually but Dad/Bob and I/Jen need to do a bit of training.  Plus this will give her a chance to gain more strength by getting more physical therapy.  We are also hoping, while she is there, she can be weaned more off the ventilator.  

Mom/Linda can answer the phone now so you can reach out to her if you wish.  However, please don't get offended if she doesn't answer when you call or get back to you right away.

Take care, Everyone, and stay warm and safe.

Jan 5, 2025

Happy New Year, Everyone!  

The new year brings really good progress for Mom/Linda's recovery.  She is more spunky on her dialysis days and is always wanting to walk to build up her strength.  She is still on the ventilator at night but we're hoping to talk to the pulmonologist, soon, to see about weaning her down.  She did show up on red cap and nasal cannula after all.  Her appetite is still climbing so that is another hurdle passed.

I haven't been there the past few days as I've been in a lot of pain but Dad/Bob has been there everyday.  I plan on leaving in a bit to join them in the 25 or so degree weather...well we'll be inside...but still...brrrrrrr.

Hopefully, we'll try to make more posts and not have such big gaps.  But,  you can always come to see her!

Take care, Everyone, and try to stay safe in the new year.  ❤️

Dec 28, 2024

Well, sorry about the lack of updates.  The Christmas Holidays come hot and heavy in the Bob and Linda Johnson household! 

We took all the family gifts down to the hospital except for the ones Santa left for the Austin,Texas babies which they opened on Johnson Mountain.

The present opening went well with the hospital lending several blankets to use that we could cover the floor for the girls; Pearl, Grace and Edie.  We all did pretty good in the getting as well as gifting side of the exchanges.  The only gift none of us got was Linda/Mom/Noni being home.  For sure next year!

On the 26th everybody made their way to the hospital to say their good byes as Jessica and Robin were flying out that afternoon and the Austin group were on a 6:00 AM flight out of Avoca Friday, after making a run to Stone Henge Golf Course to see their magnificent light show.

Friday was spent relaxing from the madness.

Today was spent watching movies and helping Jen assemble her Lego Cat present.

Linda is doing very well with the recovery process lately and we hope that this trend continues.  She is again on regular food and today had a hamburg and some Doritos.  FYI, the Doritos are not in the hospital list of patient's foods! She has also been looking forward to PT even after Dialysis so things are looking good

Sorry for the long update

bob johnson

Dec 24, 2024

Mom/Linda has been taken off the ventilator and is only on it at night.  

Today, Katherine and Jessica took some presents to Mom/Linda so she could wrap a couple gifts.  The girls also went to see her again today.

Tomorrow, Jess, Dad/Bob, and I are go to the hospital early.  Everyone else will follow a little later.

I don't know if there will be an update tomorrow so Merry Christmas, Everyone!

Dec 22, 2024

Hello Everyone.  Been a little busy with family coming in and being with Mom/Linda.

She had a little set back but seems to be on the mend pretty quickly.

Currently, she is on a ventilator but will be coming off it in the morning and going on it at night for a while.

This coming week, she will be having dialysis, Monday, Thursday, Friday due to Wednesday being Christmas.  We'll try to make time for another update soon.

Thank you for your continued patients and understanding.  Have a great Holiday Season!

Dec 17, 2024

Hello!  Mom/Linda was good this morning.  A little slurring of speech but it got better in the afternoon.  Her appetite is still up, well good for now.  And she asked when the PT would be in as she wanted to walk.  She made it from her door to the nurses station.

Jess and Robin come in tomorrow evening.  If they aren't too tired, I'll get them and Dad to do the update.

Take care.

Dec 16, 2024

Sorry again, Everyone, for missing some entries.  Mom/Linda has been improving little by little everyday.  She is now on solid food working towards regular portions.  Not only was the ventilator removed but the wound vac was also removed.  If anyone has other ways to keep her mind busy, we would appreciate the ideas.  She has at least one coloring book, colored pencils, painting markers, and a multi-media sketch pad for free drawing.  She also has access to movie galore but she most likely needs more or something different.  

According to Dad/Bob, Mom/Linda did some walking today before dialysis.  If there is anything more, I'll try to remember to add it.

Thank you all for your understanding and patience.  Also, more family will be in soon so you'll get better updates than mine.  🫠

Dec 13, 2024

Linda was already in dialysis when I got there at 8:00 so we watched a couple movies to pass the time, 4 hours.

After dialysis was over wound care came in and did their thing. Also resperatory came in and removed the respirator from her room as she won't be needing that anymore.  We told her to not come back!  She told us she doesn't want to.

Linda ate a little of her lunch and dinner but was really not very hungr by Monday she should be moved up to a little more appetizing foods so maybe this will get her eating more.

After setting her ipad up for her so she could watch deepwater horizon I was sent packing for the night.

Dec 12, 2024

Mom did pretty good on her breakfast and lunch today.  She also walked about 100 feet from her room door!  Mom only had a tiny nap afterward and was up most of the time afterward.  Mom and Dad watched a couple of movies and I left to find some tissues she would like along with getting new detergent.  Seems I'm allergic to Gain.  Dad said she was in a good mood tonight.  Seems like she is starting to adjust more and more.  

Dec 11, 2024

Big stuff happened yesterday.  Mom requested to sit in the chair and then she requested to walk!  Everyone was surprised at how far walked outside her room.  She got tired but not as soon as I thought she might.  

I was feeling a little under the weather today so I didn't go see Mom.  The only update I heard from Dad was regarding dialysis.  He didn't have much to say when he got home either.  Sounds like a pretty mellow day for Mom.

Dec 9, 2024

Hello Everyone,  Sorry we didn't update yesterday.  Sometimes when we come home from the hospital, we're too tired to do anything.  However, the one big piece of news is she can speak again!

Today, Mom/Linda was pretty alert.  I got to see her proximal sternal wound and take pictures for one of the doctors back at Cleveland Clinic.  The scar looks really good and has come a long way since surgery and prior  infections.  She got tired after dialysis started so I decided to leave and Dad/Bob stayed.  According to Dad, the rest of the day was non-eventful.  

Dec 7, 2024

Today Linda was given the OK to have ice chips again, one at a time and with supervision!  Here we take even the smallest of advances with great joy.  Also she should be given the OK this week to get the cap back on her trach so she can speak again!

Linda had visitors today!  Wayne and Sharon and then Mimi!  Although I was not there at the time I understand that a good time was had by all attendees.

Linda has been getting very good at expressing herself with the dry erase board and markers given to her by her sister Barb, thanks Barb, this has really come in handy more so than the pen and paper we were using before.

PS

Sorry about no post yesterday.  Friday was dialysis day and she spent most of the day asleep.

Dec 5, 2024

Hello Everyone!  Mom/Linda is out of the ICU and back in her room at PAM, 702.

Dec 4, 2024

This morning is dialysis for Mom so neither one of us is going in until 4pm.  She'll be done before that but she's done in the window when no one is allowed bed side.  I'll update more later.

Dec 3, 2024

Mom was pretty tired when we got to the hospital today.  Dialysis really took it out of her yesterday evening.  And of course everything else she went through.  Barb and Dave came by before heading home.  Mimi came by for a bit.  I left a little before 2pm and Dad stayed longer.  If I remember, I'll write an update.  FYI, Mom/Linda will be in ICU basically until she doesn't need to be.  Thank you all for your continued prayers and well wishes.  ❤️

Dec 2, 2024

When I, bob johnson, got to the hospital this am it was just in  time for morning rounds so got to ask lots of questions. Unfortunately, the answers were, not sure but will get back to you, which is a perfectly fine answer for me.  BTW, three of the questions were answered and completed before I left for the night and we can work on the other tomorrow.  Linda did have the endoscopy done, Dr found what looked like may have been a problem and they will be monitoring this for the next couple days. The port for her dialysis was repaired/replaced and she is now on dialysis again.

After rounds I was just sitting looking at her when I got a call from a buddy of mine making sure I was able to help him for a couple minutes tomorrow morning, when i got done and put my phone down Linda asked me if I was going to help John, her brother, tomorrow morning!  Linda, who has been only kind of awake maybe 20 minutes in the past 48 hours, with no cap on her trach suddenly decided to speak, she should not be able to btw. This for some reason caused a dust storm in the room that caused my eyes to water.  Linda's sister Barb called soon after and asked if she could come to see her again so I put Linda on the phone to say yes.  By the time she got there though the endoscopy team was there and they had Linda under so the moment was lost.

Right after that procedure was done the surgical team was ready to fix her dialysis port and then right back up to her room for dialysis, poor Barb never got to talk to Linda in person today.  She is going to try again tomorrow before she heads back to Va.

Dec 1, 2024

Hello.  Mom is still in ICU.  She mostly slept today but did get two visitors.  If you don't have one of our numbers, you can contact me through email, jen.johnson1028@gmail.com, and ask for our number(s).  Only two people are allowed in her room at a time so we need to swap if Dad/Bob and I/Jennifer are still at the hospital.  She will be quite busy tomorrow so PLEASE contact us.  Thank you.

Nov 30, 2024

Good Morning Everyone.  Dad/Bob wanted everyone to know Mom/Linda is currently in the ER at Wilkes Barre General waiting for an ICU bed.  I don't know what the visitation is for either area so please wait until you hear back from us to come visit.  Someone can text me or Dad/Bob for more later but not now as he is trying to sleep.  He was with Mom/Linda until very late last night.  Thank you and love to all.  ♥️♥️

Mom now has an ICU room.  If you really want to see Mom/Linda, please contact Dad/Bob or myself/Jennifer as only two visitors are allowed at a time and the visiting hours are different than PAM.  We also want to make sure Mom/Linda is ready for visitors.  

She is looking good considering but is still unable to speak as she needs to be evaluated by a speech therapist.

Thank you all for your patience and understanding.

Nov 28, 2024

Happy Thanksgiving Everyone!

Apologize for the gaps in updates.  Mom wasn't doing well for a while and well, I couldn't bring myself to update.  Today, however, Dad says she is awake and alert.  I did FaceTime with her for a bit and she looked good but she's still tired.  I'm not going to see her as I'm not ready to drive in PA weather yet and Dad will be staying with her for a while longer.

Unfortunately, Mom is unable to speak right now as the purple cap for her trach has been misplaced and is not able to speak without effort.  We will let you know when she is ready.  Thank you all again for your patience and understanding.  ❤️

Nov 26, 2024

Hello Everyone, 

Dad asked that anyone planning on visiting should wait a few days, please.  

Mom's on a ventilator and not very aware.  It seems her CO2 levels have crept back up.  

We will try to keep you as informed as we can.  Thank you for your understanding.

Nov 24, 2024

Well, today is the last day for me to get to be the guest writer.  Tomorrow Bob and I will visit Linda first thing in the morning and then he will drive me to the airport to head back to Texas.  The good news is that all of our family will be coming up in less than a month to celebrate Christmas here in Pennsylvania!

Today was quite literally a day of rest for Linda.  She slept all day long and clearly needed to catch up on her rest, probably after that rough night Friday night.  So even though there wasn't much chatting going on with her, it was wonderful to have a couple of special visitors!  Cynthia from Eastern Star dropped by for a nice visit and left a sweet wall hanging for Linda to enjoy.  And Tom and Sally came by for a visit with a wonderful gift--Sally's pumpkin roll to be enjoyed by all (lucky me!).

Our hopes for tomorrow are to figure out what is going on with her ammonia levels in case they are contributing to her being really tired and to get an update on how she is healing after the removal of her chest tube.  Dialysis is scheduled for tomorrow and we hope that the PICC line will finally get done tomorrow too.

Nov 21, 2024

Hello from your guest writer--Katherine!  I flew into Pennsylvania today from Texas to get a chance to visit with Linda for a few days and am delighted to have the opportunity to write this update!  I arrived around 1:00 this afternoon and Linda was awake and enjoying some very delicious looking macaroni and cheese with a side of stewed tomatoes.  She'd already polished off two small containers of milk too!  And this was after putting a nice dent in her breakfast earlier in the day.  We're all thrilled that she's working on packing in more calories on her own during the day--this is such an important part of reaching the ultimate goal for everyone of getting this lady back home!

Earlier in the morning she'd been seen by her physical therapist, but they stuck with exercises performed in bed thinking that Linda would be leaving soon for a procedure to get a PICC line.  Even without getting out of bed she got quite a few reps in--enough for her to declare, well, "Enough!"  As it turns out the PICC line procedure had to be rescheduled for first thing tomorrow morning.  

Linda remained awake for a good part of the morning and early afternoon and she and I got a chance to chat quite a bit.  I brought along a photo book I'd made with lots of pictures of our girls (her granddaughters Pearl, Grace, and Edie) doing fun things with the family.  She seemed to enjoy looking through all the pictures.  She also got the chance to peek at a few of the cards that were sent in by students.  We'll check out more of those tomorrow.

She had a couple of blood draws that had to be done (they put the blood in and then they take it back out again--sheesh!) and those are really uncomfortable for Linda.  She was stoic throughout but I know that must be a rough part of those days.  Once she got a bit of a break we perused the Hallmark Christmas movies on Netflix and I got her set up with her iPad watching a movie.  She got through a bit and then dozed off into a nap--just like home!  Bob and I stuck around until dinner was delivered but she was too tired to wake up to eat.  We'll head back first thing in the morning to catch her before the PICC line procedure and dialysis.  

Nov 20, 2024

Jen, Dad and I were all over early to visit Mom today. Knowing that it was a dialysis day and we would be kicked out of the room for 4+ hours while she received the treatment. She was pretty out of it and I think she had a hard time placing who I was at first. (I should probably reconsider my typical caffeinated morning barge in - at least until I know she recognizes me) We were told that her hemoglobin numbers were pretty low, hence the extra brain fog. But she would be getting a blood transfusion during dialysis to get her back on track.

For breakfast, she was eating eggs and rice crispies. We were surprised with how much she had eaten. So important on these days. We brought in a paper giraffe that she had made many years ago - one that she had mentioned to the counselor. He said it could bring her some happiness to see it in the room. 🦒🤞🏼

We spent a bit of time hanging out with Mom, before we were kicked out. Afterwards, Jen and I chatted with Dr Mitchell about her progress. And he once again mentioned the need for her to eat as the most important thing right now. So we will be focusing on that a lot. 

While she was napping during dialysis, we all ran some errands. I hit up Target and bought a bunch of random food items hoping that it would entice her to eat something. Her eyes lit up when I brought out the Doritos. She was munching away at them when we had a surprise visitor from Holy Redeemer - Jeanne Evans! And Jeanne brought the most sweetest gift with her - all of the seniors from Holy Redeemer made cards for Mom!! We are going to make sure she reads every one of them! Jeanne stayed for a bit to catch up, but as it typically is on dialysis days, Mom was pretty wiped. So we said goodbye to Jeanne and Mom took a nap.

It's amazing how much better she does after a blood transfusion. She's so much more alert and really participates in the conversations. Once dinner came (stuffed shells), she put a decent dent in those. I had to leave a bit early (around 530?) so I could get home to start on dinner for the rest of us. Dad stayed until she fell sleep and then came home.

I leave tomorrow, which I am sad about. But I'm glad I got to spend so much time with her while I was here. Jen is headed to go pick Katherine up at the airport tomorrow morning, so I will head in to the hospital with Dad early to get a few more hours with Mom before I leave. 

I'm hoping the next time I see her she is even closer to our end goal - getting back home to Johnson Mountain. One hour at a time, as Dr Mitchell told us. And as long as we aren't falling backwards - we're moving (slowly) forward. Which is all we can ask for. ❤️

Nov 19, 2024

Mom was a bit out of it this morning. Dialysis hangover. But thankfully throughout the day she gradually started showing signs of herself again. Dr Mitchell came in and let us know that the chest tube would be coming out today - we just had to wait until Dr Adams was available. He also said that the trach would stay in at least for a week as a "safeguard" until they know that things won't go sideways after removing the chest tube. Which makes sense. FINE Dr, we'll allow it. He also made it VERY clear to Mom that she needed to eat more - that it was super important to her overall healing and therefore her chance of getting out of there sooner (relatively speaking). I wouldn't say he yelled at her....but each meal since that conversation, she has eaten more than before. So whatever he said, it worked. Yay Dr Mitchell! 

At around noon, Mom's new counselor / therapist came in to see her. He spent about 30 / 45 minutes with her. He said that she mentioned a lot of her old students and how much teaching meant to her. He urged us to bring some of her and their artwork into the hospital since it means so much. So we'll be bringing some stuff in tomorrow. He'll be coming by again on Saturday. She seemed to really like him. 

PT came in after her therapy appointment and did some leg and arm exercises and he had her sit at the edge of the bed for quite some time. She had her head up for a lot of it, which is an improvement from yesterday's walk where she was staring mostly at the floor. He made the decision not to try a walk today since he wasn't sure of her hemoglobin numbers. The last time she was super out of it, her hemoglobin numbers were low and they had to give her a blood infusion. So he didn't want to risk it.

Once PT was over, she had a little nap. And just as Mom and I were settling down to color in a new coloring book, we got a surprise - Sister Kate came to visit! Mom was so happy to see her. We chatted for a bit and Sr Kate showed us her cane with a Linda Johnson special handle strap. It was such a sweet visit. 

And as we were saying our goodbyes to Sr Kate, Jen showed up from her Dr's appt. So there were a lot of smiling faces. Mom fell asleep for a while after Sister Kate left, so Jen took that time to go through the medical records that we had just received (PAM doesn't use MyChart/Epix, so it's an extra step to see Mom's labs and Dr's notes - sigh)

Dinner was stuffed peppers with mashed potatoes and it looked AWESOME. She ate quite a bit. woo! Dr Adam's, the surgeon, came by shortly after to remove the chest tube. Another step in the right direction.

We had a call at 7pm with the Infectious Disease Dr from Cleveland Clinic as a check in to discuss her heart surgery wound. Due to the exposed wires (which PAM is aware of and the reason she has the wound vac) the healing is taking a bit longer. We're waiting for more information and next steps once the Cleveland Clinic ID Dr talks to the PAM team. More on that when we know more. But long story short - they are extending Mom's antibiotics for 2 more weeks to make sure any chance of infection is kicked to the curb. Better to be safe than sorry.

ooooph. That was a long day. More tomorrow!

Nov 18, 2024

When we got in this morning, Mom seemed fairly awake. And she ate all of her breakfast! And drank all of her milk! Plus she said she was actually hungry. So that's exciting news. Hopefully that keeps up. Today being a dialysis day, we knew that she wouldn't really have time to eat or an appetite afterwards. So at least she got a decent breakfast. 

She was able to see her Physical Therapists today and they got her walking a bit. Farther than she has in a while. Once she got back into bed, she said she wanted to go farther, but her body just couldn't do it. We were happy to hear that at least she WANTS to keep going. Hopefully that spirit is back tomorrow on a non-dialysis day.

After PT, she had nurses come in to take care of her wound. They said it was looking good and reiterated that the surgeon was also happy with how it looked. They told us that the wound vac does help significantly with healing of wounds, and it allows wounds to heal much faster than with just covering it with dressing.

After they were done, the dialysis team swooped in. Dad and I left to head to the lounge since they would rather not have folks milling about in the room.

I chatted with the Case Manager and she reiterated what she had been talking to Jen about - our blockers of trach, chest tube and dialysis. Jen has been researching where Mom can go next once we are able to get the chest tube and trach out. We are even trying to see if at home help, PT, and dialysis is an option. So if any of you out there reading this knows any hot tips on this matter - please let us know! 

We were able to set up an appointment for Mom to speak to a therapist tomorrow. He'll be coming to the hospital - which is such a relief. We're hoping that they can give her some tips to keep her spirits up and talk through all of these BIG feelings she is experiencing. None of us (none of us writing this blog, anyway) can imagine how hard this has been on Mom. And our love and chats can only help so much. We've all realized how under prepared we were for how long this recovery could take. We definitely didn't have our expectations set accurately. But here we are now. So we are doing our best to be Mom's biggest cheerleaders and push her to keep moving forward. We're doing everything we can to let her know the best is yet to come. 

Exciting update - Katherine is flying in on Thursday to be a part of the Care Crew! When we told Mom yesterday she lit up! Katherine has already asked Mom what she wants her to cook! Pretty sure the answer was Katherine's famous risotto. I'm bummed I will be leaving the same day she arrives. (and no, not just because I want that risotto!)

Tomorrow is a non-dialysis day. So will hopefully have more good things to report. I really hope I can track down this damn surgeon so we can get some answers on those blockers. Fingers crossed!🤞🏼🤞🏼

Nov 17, 2024

Dad went to church this am, so Jen and I headed in to see Mom first. Because I was moving slowly due to the time zone change, we didn't make it in to see her until about 9am. 

Good news is that she was already eating the weirdo soup (tomato soup from yesterday's lunch mixed with Chick Fil A chicken and french fries) that she requested I throw together and put into the fridge at the hospital. Dad and I were convinced she wouldn't eat it. But apparently she was determined to prove us wrong. Love it!

Dad got there soon after we did and we chatted a bit with Mom. We've been noticing that she is having a hard time remembering things. So we are starting to "quiz" her about people and places. We'll be bringing in some pictures of the family and hopefully that will help lift her spirits and get her brain working. 

Jen and I left to run a few errands and came back with a WE LOVE YOU LINDA / MOM / NONI banner and taped up the cards that people have been sending (keep them coming!) We were also greeted by Aunt Sally and Uncle Tom. They had some fun stories to tell us and their visit brought her spirits up a ton. She was way more chatting when they were there and afterwards. 

Jen and I brought Grotto's pizza and she did a decent job at eating it. But honestly not enough for our liking. We'll try again tomorrow. 

She did ask about when she could go home. So we are going to start figuring out how / timing. Our big blockers - 

1. the trach (which we think she might be able to get out soon according to the respiratory therapist) 

2. her chest tube that drains excess blood from the area around the heart (that one seems doable soon too. She hasn't been "releasing" as much fluid as she was previously, so it's been mentioned that it might be able to be taken out sooner than later)

3. the wound vac - This removes fluid and dead tissue from the wound, and gently pulls the edges of the wound together.

4. dialysis - she will still need this, but we're hoping if the other 2 can be removed, we can bring her home and hire an in home PT. Then we can drive her back and forth to dialysis. 

We're trying to figure out all of the above. I know that we have to be patient. Being patient is HARD. More tomorrow. ❤️

--

Dad just got home and said that Aunt Mimi stopped by for a visit as well! YAY! More visitors!

Nov 16, 2024

We missed updating yesterday since Mom was pretty out of it due to Friday dialysis. 

Today was pretty eventful tho! 

One of the biggest hurdles right now is that Mom has had zero appetite. And of course that isn't helpful when we're trying to get her to put weight on and build up her strength. So when we saw Dr Mitchell he said we could bring outside food in. (WOO!) Anything that would get her to eat something. (Not nuts or chocolate) ... so we asked her what she wanted. And Chik Fil A was the winner. 🐔🍔 

Another big thing we are trying to figure out is how to balance the importance of dialysis (obvs very important) but also her need for physical therapy to gain strength. Currently most dialysis days (Monday Wednesday Friday), the PT comes afterwards and she is already so WIPED from the dialysis that she can't do anything. So we broached the subject with Dr Mitchell. He said due to how short staffed they are (only 2 dialysis people) it's hard to get them to come at a certain time, so he'll try to request that they come later in the day, but he can't guarantee. Ongoing struggle. Bah!

I asked if dialysis less than 3 times a week was possible since it's seems like she is wasting away to nothing.. .but he said it all depends on the numbers so they are watching that. Jen and I chatted about talking to the case worker Monday to figure out a way that we can see the numbers as well (they don't report them to MyChart so we can't keep track) 

The speech therapist came in today and said that since she's on the highest diet (can eat and drink whatever) she doesn't really need to see her anymore. So she'll stop coming to see her. 

The respiratory therapist also came by and said her trach looks great and she def thinks she can get it out soon 🤞🏼🤞🏼

Mom's brother John (Uncle Johnny) came to visit and stayed a while to chat. Mom fell asleep, but it was still great to see him and catch up.

I left around 330pm to go help Jen sort through some of her packed boxes (she still has a ton to go through since she moved and then they basically lived in Ohio right afterwards) ANYWAY! 

Dad stayed and said Mom ate some of her dinner - meatloaf and mashed potatoes - this might be her most food day yet! Amy and Marion also stopped by (YAY!) and they had a great catch up. AND they brought some yummy treats. He was tempted to bring them home for us, but decided he should share it with Mom tomorrow when she has an appetite. 

Side Note - I spoke to Joe from Holy Redeemer and he mentioned he wasn't sure he was allowed to visit - and that most of the school thought that was the case. Apologies if we weren't clear. 

PLEASE VISIT! 

The best days are Tuesday, Thursday, Saturday, and Sunday. She really lights up when people come by. We would love everyone that is able to come say hi. Dad is there most of everyday, so when in doubt, you can always text / call him to check how she is doing that day. But honestly - just stop by!

We'll update more tomorrow. 

Nov 14, 2024

Heyyylloooooo! After a long travel day - 6am PST flight out of Seattle, transfer in Chicago - landing in Avoca at 4pm EST, I made a quick pitstop in the hospital cafeteria and finally got to see Mom a little after 5. She looked great! Just sitting in bed and watching a movie. It was nice to see her without the NG tube in her nose. Nothing impeding that beautiful face of hers. They brought dinner around - but she didn't touch it. I took that as my cue to give her a stern talking to. Apparently she ate her breakfast (rice crispies) and her lunch (mac and cheese)...so she wasn't hungry. I impressed the importance of eating protein and not just carbs. Explained to her that the lack of protein may be why she feels so weak and shaky. She promised to make more of an effort. We also talked about her trying to do some small exercises while in bed to gain some strength. I told her I might make a little chart of stuff she can do on her own (with the blessing from PT). Especially since it seems the PT isn't as consistent as we all would like. 

After a little bit more catching up, Dad and I headed home. 

Will head back tomorrow to annoy her some more 😜

Nov 13, 2024

Today not much went on as Linda was quite tired so most of her day was spent sleeping and dialysis.

Nov 12, 2024

Today Linda was quite active what with doing some breathing and bed leg and arm exercises had her hungry so she seems to be getting her appetite back.  The PT also had her up and doing some walking!  This was good as her room has changed to 702 so she walked/rode to her new room, her old room was due for cleaning and a new coat of paint.

One of the nurses brought in some PAM word game books so Linda and I searched for words until she fell asleep and I took that as my cue to go home for supper and rest,

Nov 11, 2024

Mom was up and trying to eat breakfast when I got there this morning.  Monday, Wednesday, and Friday, her days start early so everyone has their chance to see her before dialysis.  Wound care came in to check out her wounds and change dressings and after that she found delight in eating some Rice Krispies.  Unfortunately, PT did not get a chance to see her today so he will make sure to work with her tomorrow.  

After Dad came home, he stated she was tired for the rest of the day and mostly sleeping.   Hopefully, she'll be more awake tomorrow even after PT.

Nov 10, 2024

Went to see Mom this morning and she was asleep when I got there.  I woke her up to tell her I was there.  Dad showed up after me before going to the parade.  I had gotten breakfast on my way and Mom didn't have breakfast yet so I asked her if she wanted some of mine.  She took a little bit of my hashbrown and I gave her half of my orange juice then her breakfast arrived.  She ate a decent portion of breakfast then preceded to fall asleep.  

Before that I used some of the medical tape that cannot be used on Mom for hanging up cards.  

Dad left for the parade while Mom was sort of in and out of sleep.  I left a while after she got lunch and she had a good portion of it.  Plus, she said is was the best meal so far.

Dad said Mom slept most of the time when he came back.  Hopefully she'll be more awake tomorrow even if she has dialysis and PT.

Nov 9, 2024

I went and saw Mom today.  She started out groggy perked up after a bit.  She had PT late morning then got tired.  Since she was about to sleep and Dad got there, I decided to head back home.  I'll be heading in tomorrow morning with Dad having an early parade.

Nov 8, 2024

Mom had a lot of stuff going on today so we didn't go to the hospital for a while.  Dad got there around 1:30PM and stated Mom got out of surgery and was a little groggy.  After a bit, he found out everything went well.  I ended up not going but I will tomorrow.  Dad won't get home until late so if there is anything of note I'll have him write it up sometime tomorrow.

Nov 7, 2024

Went to see Mom this afternoon and she was doing pretty well.  She was up and awake, not very sleepy at all...yet.  Mom got lunch shortly after I got there so Dad and I went to get our lunch and bring it back to eat with her.  On our way up Dad and I bumped into Mom's surgeon.  She is having a procedure tomorrow to give her a PEG, have the NG tube removed, and change the size of her trach.  

Cora came to visit Mom and brought a really nice bouquet of flowers and chit chatted for a while.  Shortly after she left, to my surprise, Mom asked to play some cards.  We played one round of Shiteeg (kid friendly name for Shithead) and while we were playing  Dottie came by on her way back to Essex.  A little more chit chat then I was ready to head home.  Dad stayed until his usual time.

Mom has a lot going on tomorrow so please no visitors until the weekend.  Thank you!  ❤️

Nov 6, 2024

Hello Everyone,  I didn't go see Mom today because I had a car inspection appointment early this morning and Dad said she was pretty sleepy this morning.  Also she was having dialysis and that usually makes her more tired.

Per Dad, she did have speech therapy, to evaluate her swallow, and physical therapy today before being put on dialysis.  

Dad left a little bit after Mom got supper and saw she was eating.

I'm going to see her tomorrow and will hopefully have a better update for your all.

P.S.  Mom likes visitors so please don't hesitate to visit.  Just be careful please.  Thank you.

Nov 5, 2024

This morning Linda's hospitalist came to see her and we expressed more physical therapy, drinking test and trach coming out.  Before we knew it the pt team showed up and had Linda standing. three times, and doing small movements while standing!  They are to be back tomorrow early as the Dialysis starts usually at 10.

After that one of the surgical team came to see her to see what they might need to do for the more permanent feeding tube and repair the surgical scar on her chest.  Pretty soon they were wisking her away for a cat scan and xrays.  When she got back from that she was quite tuckered out so she took a nap.  While napping she got a visit from a speech tech that woke her up and got her to drink some water!  She did this very well with no problems or coughing so they will try again tomorrow morning and if she aces this again she may be put on a more common diet with real water and fruit juices!  Linda also got a breathing treatment and aced her breathing exercises.

After another nap her dinner arrived, I watched her take a few spoonfulls of food and I headed home for the night.

Nov 4, 2024

Not much happened today that I know of.  Dad said Mom didn't have too much for breakfast before dialysis then shortly after eating she had dialysis.

I showed up later with Aunt Dottie to see Mom then go to dinner with Dad.  I also showed her some cards she had gotten.  

Hopefully have more tomorrow.  Take care.

Nov 3, 2024

Being the weekend not much was going on at the hospital.  I got there after Church, around 10:30, she seemed in good spirits so we did connection and wordle.  Got connection with just one bad guess and wordle on the last try!

After lunch Linda had a visit from Tom and Sally, it was a nice visit and cheered her up.  After that the weekend Dr came in and we had a nice chat about her and our expectations going forward.  Linda and I also completed a survey from the Cleveland Clinic on her stay there, needless to say that she was very satisfied with everything!

After they served supper she tried to eat for a while and did pretty good, though I thought she could have more but she said she was full.

I left for home a little after six for supper and rest.

Nov 2, 2024

Not much to relay today.  Dad said Mom is still doing well with eating and she slept.

~

One more thing about visiting Mom.  There really isn't a visitor limit but PAM would like it not to be ridiculous, no kids under 18 (it might be a bit younger), and please be respectful for the other patients.

Nov 1, 2024

Mom was up when we got to PAM this morning.  She had breakfast in front of her and was working on it pretty good.  I updated her as to how visiting will work and she asked me to relay to everyone to NOT hug her.  As you can imagine her scar is still sensitive plus she is worried about getting sick.  Air hugs should work for now.  She had a lot of care staff coming in and dialysis would be soon so Dad and I found a lounge and hung in there for a while.  Soon Aunt Mimi dropped by to pick me up and take me home.  THANK YOU, AUNT MIMI!!!  Dad may have more when he gets back.

~

Dad wanted me to apologize for the lateness.  He said Mom had dialysis and she started eating better.

Oct 31, 2024

Today was spent in bed most of the day she ate some of her breakfast, but not much.  She did however drink both of her cranberry juices!  After eating we tried connection and failed miserably so she took a nap!

The Occupational therapists came in and asked a bunch of questions and then got Linda to stand in place to check her stamina and balance, they were quite impressed with her.  By then it was lunch which she nibbled on for quite a while as her appetite has not come back yet.  Her Doctor told her that she is not eating enough to take her off the tube yet and she told him that she was trying.

We then chatted and napped until Dinner arrived and seeing that we decided I should return home to rest.

Oct 30, 2024

Hello from Johnson Mountain!!!

First, I know Jess has provided the address for PAM but please DO NOT go see her until Sunday.  She's trying to get settled and will need some rest.  That being said, you will be able to visit Sunday, Tuesday, Thursday, and Saturday without notifying us.  When it comes to Monday, Wednesday, and Friday, PLEASE check with us first.  She gets dialysis those days and the staff do not like anyone who isn't us there for the process.  Also, if you would be so kind as to wash your hands and/or use hand sanitizer while with Mom, that would be great.  And if there is any doubt of being well, PLEASE wear a mask.  Mom has been through enough without someone bringing in something to get her sick...again.  Thank you in advance for your understanding, time, and patience.

Now onto Mom.  She is doing well.  A bit tired but with it.  She told us she didn't like the transport and who would blame her.  It was a long trip on a gurney in the back of an ambulance.  She had dialysis today and a lot of healthcare worker visits.  The food was pretty good but she still doesn't have much of an appetite.  She is doing the best she can so she is still getting tube feeding for now.  

One final note for today.  If you have any questions, please contact one of us.  We don't want the staff to be overwhelmed with outside questions when they are trying to get Mom better.  Thank you again for your patience and understanding.  Take care Everyone and Dad will have an update for tomorrow.  I have a lot of chores to do for Mom, Dad, and myself.  🙏 ❤️

Oct 29, 2024

LINDA IS BACK IN THE NEPA AREA! WOOHOOO!

Jen and Dad are also back on Johnson Mountain. Finally. What a rollercoaster.

Mom's new location is PAM Health Specialty Hospital of Wilkes-Barre - Located in Commonwealth Health Wilkes-Barre General Hospital 575 N River St, Wilkes-Barre Township, PA 18702. Room 706. 

Jen and Dad will update more tomorrow. But for now, thank you all for your thoughts and well wishes. All of your support, kindness, and love has been so helpful as we've all navigated the last 2 months. We're so happy she's closer to home and that all of her loved ones can now go visit her. YAY MOM!

Oct 28, 2024

Mom was up in bed hooked up to dialysis when Dad and I got to the hospital this morning.  She was alert for a bit then the dialysis started taking it's toll.  

I had my last sushi lunch in the cafeteria and Dad had a burger from Embers.

I got a call from case management to make sure we were aware of the transfer time for Mom.  

We hung around with Mom for a while then it was time to head out.

Thank you so much Devon and Antoine for taking the worry of finding a new place with all the changes that went on with Mom.  You two are truly some of the greatest humans out there.

AND, YES, Everyone, we ARE coming home tomorrow!!!!!  🎉🎉🎉

P.S. Goodbye Cleveland Clinic, you were amazing! ❤️

Oct 27, 2024

Hello Everyone.  I didn't go see Mom today as I was taking care of some house keeping at Devon and Antoine's.  So Dad gave me his notes.  

Here we go: he met Sara today, who I guess was Mom's day nurse.  Mom has been off oxygen for 24 hours meaning totally breathing on her own.  YEAH!!!  Rob called using FaceTime so everyone could talk with Mom and apparently she fell asleep while they were all talking.  Poor Mom.  At 1230, Mom was in the chair.  No idea though if she was helped or lifted.  Recently she hasn't been feeling that strong.  The infectious disease doctor came by to say Mom is looking good.  The doc updated Mom's chart and said she wouldn't need a PICC line.  One less procedure for Mom to go through.  After a while Mom was back in bed for a room change due to cleaning needed on all of J56.  So now she's on the sixth floor.  Last thing Dad noted was Mom aced all of her breathing exercises.

I'm going in tomorrow with Dad and hopefully we'll still have good news about Tuesday.  Take care Everyone.

Oct 26, 2024

Mom was up and in the chair when we got to the hospital this morning.  She looked pretty good but then got tired after breakfast.  Nothing too much happened today.  We did hear we would be coming home Tuesday as there was a staffing issue at PAM so Mom wouldn't be able to be transferred tomorrow, Sunday.

Dad did talk the respiratory therapist into taking the nasal cannula off of Mom to see how she does.  She did pretty well.  She was still off of it by the time we left.

Please don't send any more cards to Cleveland as we will be traveling early to mid morning back Home.  Thank you Everyone!  ❤️

Oct 25, 2024

When we got there this a.m. Tatiana the Tyrant was talking to Linda about doing some standing and maybe some walking, to which Linda agreed, but by the time Tatiana got back with her equipment the Dialysis team was there so that put that off until tomorrow.

Once they got the machine hooked up Linda and I decided to do today's connection since we have had a pretty good run at that.  This was to no avail 'cause we had no idea on any even after we gave up and checked the solution.

While she was on dialysis a team came in to put a drain in the her right side of her chest which is working very well.  After dialysis, another team came in and changed her wound dressing.  Poor girl can't catch a break!  This pretty much knocked her out so around 6:30 we said our goodnights and came back to the house for supper and sleep.

Oct 24, 2024

Mom looked better today.  Still not eating too much but we're trying to get her there.  She started in bed and then was helped to her chair.  Then, of course, the x-ray tech came and it would be better if she was in bed for the "picture".   So he decided to come back later.  Mom did do some napping but not that much today.

Before lunch, Tatiana came to coax her into walking but Mom didn't think so.  Instead Mom did some standing, maybe around 1 to 3 times.  That pooped her out so then she took a longer nap and obviously lunch arrived.  Well that was our cue to go to lunch ourselves.

Mom's supplemental oxygen is down to 1L and she isn't having any support from the ventilator any more.  WooHoo!  This means she should be weaned off in no time and her trach can be taken out.  (This is probably a few weeks to about a month away.)

Mom did do some more napping as she was helped back to bed and exercise has been taking a toll lately.  After a few hours of coloring and napping, dinner came.  Then it was getting pretty late for us so we asked if we could leave for the day.  We'll have another update for you tomorrow.

Oct 23, 2024

I was right to be skeptical.  We're NOT leaving tomorrow.  The earliest might be Friday and hopefully the latest will be Tuesday or Wednesday for Dad's eye shot.

Mom was up and in her chair trying to eat breakfast.  I say try because she still isn't hungry so not much looks appetizing.  I think she napped a little in the chair but I cannot remember as not soon after we got there Mom was put back into bed.  She needed a bladder scan and dialysis was arriving soon.  Mom then proceeded to fall asleep.  Dad and I stepped out for a while to let the tech do her thing then we came back and hung around for a bit before going to lunch.  Mom was still on dialysis when we got back and she was still asleep.  We sat around playing on our technology.  Somewhere in all of this I read something in Mom's chart about rescheduling her transfer.  We hadn't been told anything so I sent a text to the case manager.  She didn't get back with me for a while so I spoke with the provider on the floor, Angela.  She went through everything with me then I told Dad and later I told Mom.  Needless to say they weren't happy with the update.  The reasoning is due to the infection which developed towards the bottom of her surgical site.  Infectious Disease wants to make sure Mom is good to go before leaving so we do not have to return.

All we can do is breathe...and breathe...and breathe.  😡🤪😂🫠

Oct 22, 2024

Whelp, what is it that Rob quoted a while ago? The Yiddish proverb - We make plans and God laughs?

Heard from Jen this morning and they're not going home today. 

Yesterday they saw that the bottom of her surgical scar site was "weeping" which caused them to check it out to make sure it wasn't infected - it isn't - PHEW. But then they wanted to get a CT scan to just make double sure all was ok before sending her home. Dr Unai (we're beginning to think he has a crush on Mom - he just won't let her leave!) looked at her CT and wants to take her to the OR and clean out the site. So they are pushing the trip back home until hopefully tomorrow but definitely by Thursday. 

Jen or Dad will update more later, but we wanted to make sure you all knew.

~

When Jen and I got there today she was in bed as they were waiting for her to be taken for the work that Jess mentioned.  Several doctors came in and did various looking and prodding and asking for signatures for various things.  As one was trying to check out her scar she winced, he asked if he was hurting her and she told him she wanted to be left alone!  He took that as a hint.

She also had a blood draw from each arm and xrays taken of the wound.

Linda and I figured out 'connection' we are on about a 4 day winning streak!

Tatiana the Tyrant came in and coaxed Linda into a walk.  Linda did 90 feet in two sessions, a new record!   This tired her out so she took a nap so Jen and I went for lunch.

At around 4:30 they came to take Linda for the procedure so Jen and I went out to the lounge to nap and catch up on our youtube.  At around 6:00 we were told that we could go back to see here but she would be quite groggy.  We went back, she was, so we said our good nights and left for our accommodations.

~

We'll now be going home Thursday...but we're taking it with a bit of skepticism.  🤷🏻‍♀️🤞

Oct 21, 2024

LAST FULL DAY IN CLEVELAND!!!  GOING HOME TO PA TOMORROW!!!  🎉🎉🎉

When we got there she was already in her chair, as usual, and the Dialysis Tech came in to hook her up for a couple hours as the GI team was not going to be able to get to her until the afternoon to look for those other pesky bleeds.  After about an hour that was changed so they disconnected her from the dialysis and waited for the GI team to come for her, which they did in about 2 hours!

Once she was taken down for the procedure, at about 1:30. Jennifer and I went down for lunch.  We came back to the ICU waiting room/lounge and made ourselves comfy.  At 3:40 the receptionist told us that Lin was out of the OR then at 4 she told us we could go back to see her.

Lin was quite groggy but the NP told us that everything went well and they were sure they got all the leakers.  The dialysis tech came back and hooked her up again as the other nurses were busy cutting out sutures and general housekeeping so Linda would be all pretty for the next set of professionals at PAM and could see what a good job they do here.

She was on for about another hour when word came down she was to be taken for a CAT scan.  As she was being disconnected again it was decided that was enough for the night.  So with us having to leave for the unhooking from the machine and the time the scan would take that Jen and I would head back to Devon and Antoine's for the night.

Oct 20, 2024

Not too much to report on today.  Mom was in her chair and hadn't gotten breakfast yet.  So we chit chatted for a while.  Mom ate a little breakfast when it finally came but not even half or even three quarters.  Her gut must be adjusting really slowly.  🤷🏻‍♀️  

Mom slept and we decided to go to lunch a little early today.  When we got back, Mom still didn't have any lunch.  We asked and found out she was having a procedure tomorrow and therefore couldn't have anything but clear liquids.  Dang it!  But she didn't mind since she stated she wasn't that hungry anyway.  Then she slept a little more.

Devon came to see Mom for a bit and we had a good conversation.  After he left, Mom didn't stay awake for long.  She woke up for a bit and I decided to get something to get her brain functioning a little more.  My coloring books and colored pencils.  I chose a design and asked Mom what colors and where to put them.  She even did a little coloring herself. 

Unfortunately it was getting late and Mom had to get back into bed and we needed to get back to the house.  We will of course be seeing her tomorrow and hopefully get a good update on the timeline for Tuesday.

Take care.  ❤️

Oct 19, 2024

INFORMATION ABOUT MEAL TRAIN

Hi all! Some of you have been asking about how you can support once Mom gets transferred closer to home (which will almost assuredly be next week!!)

Aunt Mimi has graciously volunteered to manage a Meal Train schedule for anyone interested in cooking up some yum treats for Jen and Dad. They will still be going back and forth to the acute care facility that Mom will be in, so any healthy options would be very much appreciated to make meal times easier on them.

Here's how it will work - You can TEXT Aunt Mimi (AM, Meem, Mimi, MaryAnn, Screaming Mimi, Hey You) on her cell (717) 253-6045‬ with an idea of when and what you want to contribute. She can let you know what days are available and when you can drop the goods off to her in Dallas (to avoid you having to drive up the hill) She will facilitate the delivery - she's promised to only eat SOME of the food 🤪

The only dietary restrictions are 🧅onions🧅 for Jen (if they are included, please just make them big enough to pick out) and to watch the sodium amount so it’s not such an adjustment again when Mom comes home.

Feel free to leave a note in the message section or text Aunt Mimi with any questions you might have! Thanks all! 

OUR GIRL IS COMING (closer to) HOME!!

~

Now for an update on Mom, aka Linda.  

She was in her chair eating breakfast.  She didn't eat it all but a good portion.  You gotta take it slow after not eating for about a month...  We chit chatted some and Mom took some naps.  Then it was time for Mom's lunch, which was mostly mushy foods, then dialysis.  Her blood wasn't cleaned but some fluid needed to be taken off.  So Dad and I said our "see ya later"s then went to get ourselves something to eat.  Either we are fast eaters or the dialysis tech took her sweet time, but Mom wasn't hooked up yet.  So we stepped out while she got hooked up, Dad went to see if he could find the Formula 1 race on TV in the lounge.  After she was hooked up, I went in and texted Dad he was good to go whenever he wanted to come back.  Mom slept through the three hours of dialysis while we played on our phones and talked with Lisa, the dialysis tech.  Right after Mom was done, dinner was waiting for her.  She had what looked like beef (cut up), mashed potatoes, and cut up carrots.  After a bit we said our good nights so we could get back to the house.  I'm going to sleep early but Dad is having steak with Devon.  🤤  

Thank you in advance everyone for making us food.  Fast food is only good once in a while when it's a treat...

Oct 18, 2024

Linda was on dialysis when Jennifer and I got to her this morning, we were just a tad later than usual because we had to move out of our apartment this morning but all is good because we will be staying at a friend of Jennifer's that is a Doctor in the Cleveland Clinic system.  Thanks Devon and Antoine!

The dialysis lasted until 11 so we did some chatting and napping until 11.  After that Linda took another nap until her lunch came!  Yes, real food, the first in over three weeks.  She got yogurt, tuna salad, protein drink and creme brulee.  After this meal she took a much needed food coma until Tatiana the Tyrant, one of Meredith the Means compatriots, got her up and walked 78 feet! Everyone there is surprised to see her drive to get up and moving.  This put Linda into the need for another nap.  

For dinner Linda had Roast chicken, mashed potatoes and broccoli with protein drinks and another creme brulee for desert.

Jennifer and I left soon after supper to try to find our new home until Monday.

Oct 17, 2024

Jennifer stayed in today as this is our last day at this apartment so she needed to do light cleaning, clothes washing and various other chores.  Thanks Jen.

By the time I got there Linda was already sitting in her chair and had the breathing exercises done, they get going early here!

We sat and chatted a while then the team showed up to place a camera capsule in her stomach towards her small intestine to try to locate any other bleeds that there may be.

She was just having trouble in the bed so we requested she be put back in the chair.  Upon seeing this Meredith the Mean, Meredith loves the title btw, came by and told Linda that she should be back in 5 minutes to take Linda for a walk. By the time she got back the dialysis machine showed up so that was put off til tomorrow.

The dialysis took 3 1/2 hours so Linda was quite out of it for that time, sleeping for most of the afternoon. By the time she was disconnected it was late and I had to head back to the apartment, the low point of our day for sure.

BTW: Yesterday Linda went for quite a long walk, almost doubling her previous record!  Hopefully she will break her record again on Friday.

Oct 16, 2024

Well...we're not going home tomorrow.  The GI specialist and Dr. Unai really want Mom to have one more test before she leaves.  This test will be sometime tomorrow even though it's scheduled for noonish.  Mom did have a barium swallow which came out well.  She is not able to have solids yet but she can start to have mushy/thicker liquids after the GI test.  A feeding tube was placed back in.  This is to make sure she is getting adequate nutrition due to her lack of being about to not consume to much yet.  And the nephrologist put off dialysis for another day.

We're hoping the latest we will leave is Tuesday.  When we do get home, please wait until we say it is okay to see Mom.  We want to make sure she is settled in and ready to receive visitors.  Thank you in advance for your understanding.

Oct 15, 2024

Mom had a procedure last night to put a filter in her vena cava.  A clot was found and the anticoagulants are causing somewhere in her gut to bleed.  The filter will catch the clots before they get way to close to her lungs or heart.  Unknown yet if they will keep her off the blood thinners.  Today a scope was done on the upper part of Mom's GI (gastro-intestinal) to find any bleeding.  A minor one was found and it was cauterized.  Next a capsule will be swallowed to take pictures all through her GI as the bleed they cauterized could not be the cause of Mom to be losing so much blood.

Her feeding tube was taken out during the scope and was put back in.  Unfortunately, the tube wasn't working and it had to be taken out and another attempt tried.  This was unsuccessful and the doctor said it wouldn't happen until tomorrow as he didn't want to cause Mom too much more pain.

Tomorrow she will be getting the feeding tube, dialysis, and supposedly a barium swallow to see if she could start eating solid food or such.  Hopefully we'll have more information regarding Mom's transfer tomorrow.

Take care everyone! ❤️

Oct 14, 2024

So many good things today!!!

Today started out with a procedure to give Mom a semi-permanent port for dialysis.  This is so Mom doesn't have to be stuck over and over again for access to a large vein.  She will have her arterial line taken out later today when she gets back into bed.  She was also checked for clots via ultrasound.  

A little later in the morning, PT came by and asked Mom if she wanted to walk now or later.  She was mostly asked because of the sedation she had earlier for the port procedure.  Mom was like, let's do it now.  Wow!  I think this is the first time she has been totally up for walking.  Tatianna got Mom all set and I trailed with the chair for when she wanted rest.  Mom walked from her bed to about the edge of the front desk, 28 feet!  All the nurses and the providers where cheering her on. ❤️  She took a rest then stated she wanted to walk back to her bed!?!?  She proceeded to walk the 28 feet back to her bed side then sat in her chair.  She did nap for a bit but not as much as she usually does.  WINNING!  

The best part of Mom's day is when the Speech Therapist came in to see how good her swallow was.  Mom got to take little sips of water for the therapist to evaluate her.  She pretty much passed with flying colors but was warned not to take too much at once.  She was also allowed a few pieces of ice on the spoon and to sweeten the deal Mom got to have some popsicles.  Needless to say she is over the moon and the happiest she's been in a while.  🎉  

We also have a little update on when we might go home.  We thought the earlies might be tomorrow but now it's looking like maybe Thursday.  Mom needs to have one more round of dialysis before they'll let her travel.  More about that later as we will be keeping you updated as usual.

Take care everyone!  And, Thank You!  🙏 ❤️

Oct 13, 2024

Mom's asking about Wilkes Barre.  We keep on reminding her it depends on her body and the providers.  Hopefully, we'll have an update tomorrow.

No physical therapy today but there were breathing exercises and they took a little bit out of Mom.

Other than taking naps, Mom did color a little but then she said she would rather watch me color.  So I worked on the one she started and she had to tell me the color and location.  It's not complete yet as my hand needed a break.  Darn arthritis!  Dad worked on the usual phone/tablet games with Mom.

OH!  The ice chips were taken away since basically there was no note from the main provider saying it was allowed.  Plus, Mom must do a swallow study to be able to take anything like water or food.

Oct 12, 2024

Linda was on dialysis for 4 hours today, her blood pressure took it well the next one will be on Monday.  The nurse took the port out of her leg as they will be putting in a semi-permanent one on Monday.

I gave her a face wash and tooth scrubbing.

The highlight of the day was when she was told that she could have 2 or 3 ice chips every 20 minutes!

The rest of the day was spent sleeping as the dialysis seems to take a lot out of a person.

Oct 11, 2024

I know it seem like a lot of repetition, folks, and it is exactly that.  Dad and I are okay with it as Mom gets better little by little every day.

Mom was up and in her chair.  She was pretty awake so physical therapy decided to take advantage and have her walk a bit.  Mom took about 20 or so steps with one rest.  Then took some naps.  Understandably.

Mom was on the purple cap (allows O2 in along with her breathing) this morning but taken off it for a bit due to some slightly bad lab results.  I left around 3PM and she was back on the purple cap.  I don't see the red cap (Mom's breathing on her own, NO O2) happening today.  It's okay though.  Mom is still doing great regarding her breathing and need of O2.

The nephrologist said Mom did really good on the prolonged intermittent (6 hours) dialysis yesterday so after resting today she will have intermittent (3 hours) dialysis on Saturday.  If her body tolerates this, it looks good for starting to come home sometime next week.  In fact LTAC (we have chosen PAM which is located in Wilkes-Barre General) was mentioned in her chart yesterday which I take as a positive.

Thank you for all the good vibes and prayers, Everyone.  Keep them coming.  ❤️

Oct 10, 2024

Mom was up and in her chair when we got to her room this morning.  I read all the cards I got mailed to us from home.  She was especially happy about the cards made by the I.I. kids of Holy Redeemer.  Thank you all for brightening up her day.

The respiratory therapist put a red cap on Mom's trach along with a nasal cannula so she could breath completely on her own.  She did well the entire time.  Then the prolonged intermittent dialysis machine was brought in and hooked up.  Her nurse, Colin, wanted her back on the ventilator assist so Mom's body wouldn't have to work hard through dialysis.  According to Dad, Mom slept through her 5+ hours on dialysis and she did great.  That is very promising to hear.  If I'm remembering correctly, Mom will be put on the intermittent dialysis machine Saturday.

Before Dad left to come back to the apartment, Mom's line in her neck was removed.  WooHoo another victory!

Oct 9, 2024

Went with Dad this morning to see Mom.  She was a little sleepy so napped for a bit.  Mom was also a little depressed, really wanting to leave.  Dad and I try to keep her spirits up.  

Mom was disconnected from the continuous dialysis and left off for the rest of the day.  Tomorrow they will try the prolonged intermittent dialysis (6 hours of dialysis) and see how she does.  If Mom's body tolerates the prolonged intermittent, Saturday she may move to intermittent dialysis (3 hours).  If her body tolerates intermittent dialysis well, then that is one more hurdle conquered to move to PAM.

What we mean by her body tolerates the dialysis, we mean her blood pressure stays good throughout the process without getting an IV pressor (blood pressure medicine).  Right now she is off the norepinephrine and on a every 8 hour pill to keep her blood pressure up.

Mom got two different types of PT.  One to see if she could wash her hair, squeeze a stress ball, and wash her face.  She still needs a little more strength.  Mom also had PT for her legs.  The physical therapists got her up, moved to her chair and 2-3 more standing attempts.  Mom took a nap after that and so Dad and I went to lunch.

Mom was awake when we got back so I read her a card from Scarlett, Thank you.  And Karen Wagoner, Thank you.  Along with Karen's card was a picture of people from church holding up signs with said we miss you...and you too Bob.  Thank you all very much.  Mom really enjoyed them.  I also showed her a video of the girls, maybe mostly Edie, Rob sent earlier to cheer her up.  She liked that too.  Thank you Bro.

I had to leave early to get some mail with temperature sensitive medication so if Dad has anymore to report I'm have him do so.  

~

Bob here

After Jen left Lin and I spent most of the afternoon watching the cooking channel.  She needed her face cleaned so one of the nurses got me a wash cloth and warm water and I gave her a face wash, hope she expects this when she gets home!

Linda assisted the nurses get her on and off the throne and into bed so the nurse said, no more lifting crew, she will be doing this herself, with a little help from the nurses.

After she was comfy in bed a respiratory therapist came in and did a breathing treatment and then some breathing exercises, which she aced.

After a couple hours of small talk, mostly me, she began to nod off so I took that as the cue for me to head back to the apartment, with her approval, of course.

Oct 8, 2024

Today Linda was put to work by Meridith the Mean and one of her minions, they had her standing up and sitting down, moving left and right and back and forth, first with them assisting then with her using a walker.  Finally after another stand she called it good for the day, she was pooped out, and when they put her back into bed she dozed right off!  I took this opportunity to go for lunch.

After lunch we were visited by a Music Therapist duo, they queried Linda on her music preferences and i told them that she would like to hear some Christmas music, Linda agreed on that genre, they left and came back with a cart with all sorts of instruments and an ipad with music and lyrics. Linda and I both enjoyed their renditions of White Christmas, Blue Birds and Walking in a Winter Wonderland.

After they left Linda went back to sleep to get ready for tomorrows visit from the physical therapy mafia.

Oct 7, 2024

A normal day today.  Mom started off sleepy but after about two naps she is awake.  Her lungs are clear of fluid so she had the chest tube taken out this morning.  Mom's dialysis and levo (norepinephrine) are still going.  It's a balancing act so the levels change throughout the day(s).  We are waiting for Mom to be off the levo and weaned to intermittent dialysis for her to be able to leave.

It sounds like the nutritionist said the IV nutrition will stop tonight and Mom will continue to move forward with tube feeding.  At some point she will get sustenance by mouth but she doesn't want to go backwards so we're ALL sticking to the rules.  However, one of Mom's nurses did start to give her some ice chips.  The doctor has not signed off on this yet so right now only RN supervised ice chipping.

PT was in today and got Mom to stand two times.  They said she did really well.  The best part is it didn't seem to make her that tired.  WooHoo!  Then the nurses moved Mom into a recliner, which she stood on her own and moved to.  Woot Woot!  Still up and keeping an eye on the Halloween baking contest on TV.

I left around 3PM due to an online appointment and Mom was still awake.  Noice!  If anything significant happens, I'll be sure to report it or have Dad do it.  Take care Everyone.

~

I, bob, stayed with Linda until 7:00 when she was put to bed and started nodding off. I asked if it was ok for me to head back to the apartment and she said yes.  After a couple chores she had for me to do I left.

Oct 6, 2024

Mom was pretty tired today.  Dad saw her first and she slept most of the morning.  I went over around noonish to see Mom and have lunch with Dad.  She was up when I got there but then fell asleep.  She was up when we got back and for a while.  But, she fell back to sleep.  The respiratory therapist took the purple cap off (helps her talk) so she could get more air and not be so sleepy later.  

I'm going in early tomorrow to hopefully talk with the docs to see what next steps are.  We are all anxious to get out of here as long as Mom is stable.  Crossing fingers and toes.  🤞🤞

Oct 5, 2024

Hello Everyone.  Back to me, Jen, who is not a very written wordy kind of person.  

Per Jessica this morning, Mom is off the epi and the levo is down to 2.  Her dialysis was cut down to pulling 50 now and the staff was going to try and wean her off it.  The respiratory therapist said Mom is doing even better than yesterday and did 30 air puffs (she has to blow into a device to create a sound).  Mom's blood pressure was looking good as well as her weight but her left arm swells and drains, swells and drains.

I walked over halfway through the day to have lunch with Dad and Jess then sit with Mom when Dad took Jess to the airport.  Unfortunately, Mom was not weaned off dialysis yet.  But, that is okay.  She is still doing great.  I was surprised at how awake she was since I'm used to her being tired most of the day and taking multiple naps.  Not much to say so I turned on the TV and put on the Hallmark channel.  Mom fell asleep shortly before seven so Dad work her up to say good night and she went right back to sleep.  

Please say a couple meows tonight as I lost my Lacey yesterday evening.  Thankfully my wonderful cousins, Amy and Maya, were with her.  Thank you both so much...again.  ❤️

Oct 4, 2024

This morning started early cause Linda asked her nurse to call Jennifer and find out where we were, it was 6:30 am, visiting hours aren't until 7, and don"t even think about 8 because of the shift change and other factors

Jess and I, bob, got there around 8:20 and she was looking quite a bit better than yesterday.  We spent most of the morning trying to figure out what Linda was trying to say and want.  Jess had to leave to go back to the apartment to do some work related calls and such. Linda and I continued to try to converse what with her various doctors coming in to see her and complimenting her on her recovery.

I went for lunch around 1:20 and when I got back I was told that she had visitors!  Debbie and Larry Hilbert stopped in while they were here for a routine check up for Larry.  They both told me that they had a hard time understanding her because of the trach.  When they left I went back to see her and the speech tech was there and had put a cap on her trach allowing her to talk louder, we were both very excited with this development!

We made some phone calls so she could speak to her children so don"t feel left out if you were not one of those lucky few.

She was given an ultrasound to check out her heart and they saw fluid on the right side so she is still on dialysis for a while.

She is just barely on any of her iv meds and will probably be off them tomorrow.

There is also a chance of her stomach drain being removed tomorrow

Linda also opened a package from Tommy Gunshannon, it was a get well card and Bullwinkle The Moose Doll, thanks Tommy!

After getting her situated for the night we left around 7:15 to get back, eat and unwind.

Oct 3, 2024

Breaking news! Jen got called by Mom's case worker a bit ago. Their goal is getting her discharged to an acute care facility in a week or so! At this point it looks like her main concerns are to start weaning her off of the ventilator and dialysis. And this can all be done closer to home 🥳🥳 

We've talked to the Respiratory Therapist a lot today. He thinks she is doing great with the trach and wants to try capping it tomorrow. Which means she can try to talk and breath on her own completely. This will be a short trial (could be for only a couple of minutes at a time) but it's a vote of confidence that she is improving. Especially because she isn't getting much oxygen support right now. Currently she only gets hooked up to bipap at night. Next steps on that front is to get to a point where she is off bipap and breathing on her own night and day.

One of the doctors came by to update us on her overall status. He said that what we are now looking to improve, in order for her to be discharged to the care facility, is getting her blood pressure to stabilize. Due to the dialysis machine taking off so much fluid, it effects her blood pressure. So she is on 2 different meds for that. Once those can be stopped, they will know she is ready for the next phase.... Out of this damn ICU (JK everyone has been so amazing but yeah we are all ready to go home)

Oct 2, 2024

She was even more alert this morning. And had already asked for ice 🤣 I asked her if she had felt like herself since the surgery before today and she nodded no. Even when she was awake / alert before, it was nothing compared to how awake she is now. 

Due to the trach, she can't speak, but we know she has a lot to say. Katherine suggested an app that she can point to certain words or phrases, so we have been trying that a bit. She is still a bit too weak to raise her hand to point to the ipad, so we have reverted back to reading her lips. So far, with a lot of patience on all of our parts, we are able to understand what she wants / needs.

I was eavesdropping on the drs as they did their rounds and it sounds like they are calling in GI to see why she's been having some tummy trouble. He is guessing it is stress ulcers. Stress? What ever could that be from 🤪 When we talked to him directly, he said it happens a lot. 

He also said that they are going to try a trach collar. Which means that they are ready to have her breathing on her own fully without help from the ventilator. They will still hook her up to it at night fully to aid the breathing, but during the day when she is awake, they will start to wean her off. Apparently she is only getting bipap / breathing treatment right now through the ventilator and is doing all of the breathing on her own. woo! 

The doctor also said she will be seeing PT today, so hopefully that will help get her moving a bit more.

As far as the dialysis goes, they have lowered the output rate today since they have already taken off quite a bit of fluid. She definitely looks more like herself today physically. So that's a good thing. The Dr said the next step would be to do intermittent dialysis to see if they can't get her kidneys back online themselves. And then they would add on lasix to see if they could get them working on their own completely. So fingers crossed we are able to get there. From what it sounds like, the dialysis will be the longer journey.

--

Today feels like it was 4 days. I think Mom would be sleeping VERY well tonight after such a big day - if it wasn't for the Golightly (IYKYK) she is being administered for her GI procedure tomorrow. Besides continuing to adjust to the tracheotomy from yesterday morning, she has been trying to communicate a lot. We've tried the communication app again to no avail, and then tried paper and pencil, which actually worked surprisingly well considering she doesn't really have the strength to put pressure on the pencil enough to write. She also sat upright with minimal support for 15 minutes and actually stood up (!!!) with PT help. Great news is that she also got a trach collar this afternoon and had several rounds of suctioning to get some gnarly stuff out of her lungs / throat. Now the oxygen weening will begin! Plus she was visited by about 6 doctors. All for the various curveballs she has been thrown. She is back down to the weight she originally came in to the hospital with. woo! Finally getting rid of a lot of that fluid. (almost 40 pounds!!!) And her blood cultures came back negative for infection. So we're slowly getting there. Hopefully after the procedure tomorrow morning, we can get the GI 💩 figured out. This lady needs a break. 

Oct 1, 2024

The concierge in the lobby are putting up Halloween decorations. I can't believe we are still here. Everyone here has been so lovely and helpful. We thanked Dr Udeh again this morning for taking so much time with us yesterday and really breaking everything down so we understood what was happening with Mom, what we could expect, and what he hopes to see moving forward. It makes it so much less scary and gives us so much more hope.

We got another update from him again this morning. He said she is off of everything except for the epinephrine. Which is down to 3 now (was at 6 yesterday) and by the end of the day he wants her down to 2. And hopefully off tomorrow. 🤞🏼 So that would be off of everything again except the vent and dialysis. I feel like this is a big win after everything she has gone through. The more she can do "on her own" the better. Dad was just telling me that Devon (Jen's college pal who is a Dr here and has come to visit Mom a few times) said "she has to do the work. it's gotta be her that gets herself out of here" ....and even a heavily sedated Linda, seems to know she needs to do the work.

Her weight is down 10lbs, so she is definitely losing that fluid again. PHEW. Her feet look way less puffy today as do her legs (but still puffy). Dr Udeh is going to get with PT to see if they can’t wrap her arms to try and kind of force the swelling down.

She's about be hooked back up to dialysis now that she's back from the trach procedure. So let's see how today goes. More later. 

--

Just met with the infectious disease Dr. She will remain on the 2 antibotics for now. They seem to be working well for her. He is focusing on the blood infection mainly, since the "lungs aren't a sterile place, so there are all kinds of bacteria in there normally" .... once they get the second round of blood cultures back, he may switch one of the antibiotics to really focus in on the blood infection more. He was happy to see that she is off the blood pressure support meds as that is a huge indicator of the infection going away. I questioned him about something he wrote in her MyChart. He said one of the antibiotics were "surprisingly working" ...it took him back a bit, but then said he was happy that we were so interested in what is going on with her (duh) and glad we come with questions. He explained that the one antibiotic usually only hits about 20% of infections, so he was happy this one was in that 20%. I said "wow, so she's lucky!" which feels absurd to say when you take everything that is happening with her into consideration. but...we'll take it!

--

Mom was even more alert when Dad and I went back tonight. She was trying to say something and after a lot of guessing - I even wrote the ABCs on a piece of paper to point to - I finally figured out she was asking me when I was going home. (in our family, a running joke is as soon as anyone arrives at a destination - usually home in Beaumont or to a holiday somewhere - Mom ALWAYS immediately asks when you're leaving.) I was so excited that she was trying to talk again that I didn’t realize it until I was texting the update to Jen and Rob. And I was like WAIT. And I went back over to the bed and asked her “were you trying to be funny?” And she nodded. Her sense of humor is intact!

She looks so much better than she did 24 hours ago. All smiles over here. 

Sept 30, 2024

Alrighty - big updates. The good the bad and the ugly. 

Dad and I spent a long time talking to the Dr on duty (Dr Udeh) this morning. Mom has some wins - 

She has made drastic improvements in the last 24 hours since being on antibiotics. When they intubated her this time, they also removed some cells to see if she had a respiratory infection. They found 3 different types of bacteria in her lungs. He said she aspirated when she vomited last week and he believes that was the cause of the infection in her lungs. She also has a blood infection. Good news is that both antibiotics that they put her on are working. There is no sign that the bacteria is growing and thankfully all infection strains seem to be responsive to the antibiotics. She will be on them for 10 days to 2 weeks. 

Her liver numbers are looking good. Which, the doctor said was a great sign. Especially since the liver is such a complex organ that does so many jobs, there isn't a machine (like dialysis or a ventilator) that can be hooked up to give it a break. So the fact that her liver is good, is a great thing.

They have already been able to wean her off of Epi from last night at 20 down to today at 2. Which is a BIG win. Shows that she is able to regulate her own blood pressure. 

Although she is on a ventilator, they are only actually pushing 30% of oxygen to her. So she is doing a lot of the breathing on her own. And honestly, because of how swollen she is from the fluid retention, she is actually working harder to breathe than we are...and she is still killing it! (that's from the doctor!) The doctor explained to us that what we see on the outside (a very swollen puffy Linda Johnson) is mimicked inside. So puffy lungs make it harder to breath. Battling that and still breathing mostly on her own is another BIG win.

As for the fluid retention, that's the hard part. Like Jen or Rob said in a previous post, it's a delicate dance to remove fluid because to treat infection they need to give her fluid. So the dialysis can be working overtime to remove fluid, but the doctors just keep putting more in her body. SIGH. But hopefully now that we are on track to kick these infections to the curb, we can start to see some real progress in the fluid retention. 

A bit of bummer news - She will be getting a tracheotomy tomorrow or Wednesday. All the doctors agree that it is the best option to get her lungs back in shape. It is actually a step in the right direction and isn't permanent. With a breathing tube, you are either on it, or you're off it. So they can't slowly improve her lungs bit by bit. With a trach, she can breath on her own, and when she needs a break, they hook her back up to the oxygen. Then take it off when she feels stronger. So think of it like training for a marathon - getting back to powerful lungs has to start with small steps. He believes that the respiratory infection was caused by her being too weak to cough out the bacteria. And with a trach she can slowly improve lung function to get that coughing power back in order to protect herself.

She is responsive to her name and wiggles her feet and moves around a bit, but for the most part she is fairly out of it. When I reminded her that Robin and I close on the house in a week and a day her eyebrows went up. So we know she can hear us, it's just A LOT to respond. Her poor body is fighting so much. 

We've all made comments on how we came in for the HEART but no one ever mentions it. Because it is doing its job. HUGE WIN. Mom just keeps getting hit on each side with new challenges. The universe has no idea how strong this woman is. But please, Universe, we could use a break for a bit. I think Mom has shown she was up for the challenge, and she is ready for smooth sailing now.

Because of all of the above, Jen and Dad extended their Airbnb until mid November. Keep that healing energy coming. Love you all. ❤️

Sept 29, 2024

I'm (Jen) still feeling stuffy and rundown but way better than yesterday.  I'm hoping to go see Mom today.  Dad of course is already over there.  I'll report back later.

~

Whelp, I'm back! (this is Jess) I flew back in this afternoon and will be here the rest of the week. Hate to see Jen so worn down. damn you allergies turned sinus infection! So hopefully me being here can give her some more time to rest up. I know Rob being here last week was really great for Dad and Jen! 

So the Mom update - She is hooked up to even more machines than she was right after the surgery. This infection is really hitting her hard. They are doing everything they can to figure out what the culprit is and in the meantime keeping her sedated. The breathing tube and the dialysis are both taking over the big work so the rest of her body can recover. Per her nurse tonight, her pressures are looking good and her numbers (ammonia, carbon dioxide, BUN, etc) are also looking better. So our motto remains : WE'LL TAKE IT!

It was hard to see her this way when I got here. Especially since she was talking and getting some steps in when I was here last week. I know she will be right back at it once they can this infection under control. NOTHING keeps Linda Johnson down! Please keep sending all those good thoughts and prayers her way. We can really use them. ❤️ 

Sept 28, 2024

Sorry for the late post.  I (Jen) am sick so I didn't go see Mom yesterday (today).  

Through our sibling text group, it was reported this was the sickest Mom's been since she's been at Cleveland Clinic.  The doctors are on it though giving her antibiotics here and there as they are not entirely sure from where the infection is coming.  It's a delicate balance with how the doctors are treating Mom due to her fluid retention.  However, the care team is saying Mom is definitely having more positives than negatives.  There's probably a little more detail but that is the take away.

I don't know if I'll be going over Sunday but hopefully I'll be feeling better.

Sept 27, 2024

Hello Everyone,  Mom has made about five steps back.  She's still on bipap/cpap (whatever you want to call it), she's getting dialysis, and she's getting antibiotics.  There is a little bit more but that is all I'm going to describe.  Mom is mostly sleeping so I came back to the apartment to give Rob time with Mom.  And ya'll know Dad is still there.  Probably won't be too much more to report today but we'll let you know.  ❤️

Man makes plans and God laughs. So it was with my trip to Cleveland. Mom is now back intubated for the weekend. The nurses and doctors were all looking to give her lungs a break. So with that and the dialysis machine giving her kidneys a break this is a reset for her.

Sept 26, 2024

Mom was even more lethargic than yesterday.  She wouldn't even do breathing exercises.

While Rob and Dad took in a movie, I was on Mom patrol.  She was in her chair when I got there but then she wanted to get back in the bed.  Mom did not verbalize this; it was a matter of asking the questions and getting a nod or a head shake.  She had a couple lucid moments but mostly she was out of it.  She missed the first round of lasix so Danielle, her nurse, started her second dose early, about an hour.  And, unfortunately, Mom hadn't passed much urine lately so she was blowing up like a balloon.  

Shortly after Dad came back she was getting another breathing treatment and the head respiratory therapist didn't like her breathing.  Mom was "threatened" with the bipap and she started to get handsy when the bipap was starting to be placed on her head.  That was the last straw for me.  I headed to the nursing station to speak with the Intensivist.  I had heard bits and pieces of people talking about dialysis and this was going to happen.  It would be the overall best thing for her.  I was only there for three to four hours and Mom's belly had doubled in size and her legs were getting worse.  The Intensivist came down to her room then called the nephrologist.  They finally agreed to put her on continuous dialysis.  It will start tonight and last for a couple days to about two weeks staying in the ICU.

We need those prayers and good vibes again Everyone.  We'll update you tomorrow.  ❤️

Sept 25, 2024

IV nutrition stops today!!!  Probably this evening when it's almost done.  

Mom was up when we got there and in her chair.  She is completely wiped from yesterday but Holly, Mom's nurse today, suggested she do something with physical therapy when/if they come by.  By the time I left, they hadn't shown up yet.  But guess who's here to do some cheering on?!  That's right! Rob is here!  Maybe they'll have more updates this evening.

~

Ok errbody, Rob's here to whip this gal into shape. PT came by and Mom couldn't muster more than a few steps. I gave her the business and she gave it back. All part of my plan. The PT gave us exercises to do with her throughout the day.

The line that drains her stomach is also out now. Hopefully when we get back in the morning the feeding and insulin will be gone. The tubes are droppin like flys!

Dr Patel from Dr Unai's team stopped by and said the progress is slow, but positive. Also that the only thing keeping her in ICU is energy and appetite. Say no more doc, say no more.

Sept 24, 2024

Dad came in late today so I helped Mom with breakfast.  I sweetened up the cream of wheat and made her coffee.  She had two breathing treatments and one breathing exercise while I was there and the respiratory therapist liked Mom's work on the exercises.  Toot, toot!

More lasix was ordered as Mom's legs were pretty swollen today.  But that didn't stop her from walking out of her room to about half curtain of her neighbor.  I wheeled her back to the door and the physical therapist wanted steps from the door to the bed.  She then got a feeding tube, which is a good thing, to help her get her appetite back.  Mom was a trooper!  And, Yes, she took a nap after that so Dad and I went to lunch.

When we got back from lunch, Mom was back in her chair working on the last little bits of her lunch.  We hung around more while she drifted in/out of sleep and I started to take a cat nap on her bed.  After a bit I left for the day but Dad will be there until she kicks him out or he decides it's time to go and let Mom be for the night.

Great Job Mom and Thank You Everyone for the prayers/good vibes/etc.

Sept 23, 2024

No Step Down today, hopefully tomorrow.  We'll all have to wait and see.  Mom walked a bit today which was good.  She was asleep by the time I got to the apartment for my virtual appointment.  I'll see what she's up to next and get back with you.

~

Mom was up when I got back to the hospital.  She was still a little tired but awake.  She moved back to the bed then proceded to fall asleep again.  Dr. Unai stopped by and said Mom stills needs to gain some strength.  Dad and I looked at each other and said it wasn't really an answer.  Oh well...  😏🤷🏻‍♀️

Sept 22, 2024

Jess left this morning. 😞  Her presence was very appreciated.  Love you!

Mom was pretty awake today and was taken off oxygen to breathe on her own.  Unfortunately, she over did it and was extremely exhausted to the point of her blood pressure going really low and needing oxygen again.  Mom's blood pressure got better but the nurses are going to watch her closely tonight.  

Thank you Devon and Antoine for coming to visit today!  It was really great to see you and brighten my mom's day.

Sept 21, 2024

This morning we chatted with one of Dr Unai's team members. He said due to Mom's weakness (and her ammonia levels being up - which isn't indicated in her labs - but we aren't the doctors. DARN) she is staying in ICU at least through the weekend. DOUBLE DARN. 

Good news though - with the help of her 🪖 Boot Camp Sergeant Nurse Kayla, Mom walked out of the room and back in (about 50 paces.) She had to sit twice, but whatever. We'll take it! She also did both her breathing exercises with ease! Even doing 12 or 13 breaths instead of the normal 10 on one of the exercises. Always the overachiever. She said a few times today "I have to exercise!" -- so she definitely knows what she needs to do. She's also been drinking her protein drinks like a champ. They are 40g of protein each, so the nurses are all happy with that intake. Still on the TPN (IV nutrition). 

She was up for music playing most of the day as well. Typically she hasn't been interested. But today, it's been playing and her feet have been moving to the beat! (Her soundtrack for her walk was even Mamma Mia!) 💃

Mom and Dad are currently playing NYT games, wordle and connections. And she is just about to get another pint of blood. I think she might be turning into a vampire. 🧛 WATCH OUT Beaumont! More later. Maybe even another walk? 🤞🏼🚶

--

She didn't manage another walk today. The one she took earlier took it out of her. But she did do well on her 2nd and 3rd breathing exercises. So, again, taking that as a win! 

I was telling Nurse Kayla that our motto should be "we'll take it!".. since I keep saying it to celebrate the small wins. Every small win gets us closer to one big win.

Mom looked much better today. The 2 steps back we felt she took yesterday after the IV line issue, was more than made up for today. I see her getting her sense of humor back and even got a bit of a shock when I was reading an email earlier (not paying attention to what was happening in the room) and the strong voice of the Linda we all know and love hit my ears. It made me smile. Later on I was telling her that she gets to ask for and do whatever she wants once she breaks out of here. Casinos 3 days a week? DONE! and she just said "I''m going to bitch a lot" -- Dad and I were like ...ooookay then. yes you get 3 months of bitching for every month you've been here. 😝 so right now we have almost a full month in ICU. Prepare yourselves, people.

I leave super early tomorrow to head back to Seattle. So we said goodnight at visitor's curfew (9pm) and left. So glad Jen and Dad (and a whole slew of medical staff) are taking care of her. I can't wait to have her back in true Linda Johnson fighting form. ❤️

Sept 20, 2024

Unfortunately Mom isn't in step down yet but soon. Her surgeon, Dr Unai is apparently very strict. (so says all the nurses 🤣) ... Which is good because he's amazing. But bad because there is no wiggle room with protocol. He won't let her leave until he knows she won't revert back to ICU. She's pretty weak right now. I think mainly because she isn't eating (only on IV nutrition-which is basically just to keep her going) but her strength is coming back little by little. Yesterday she stood 4 times without a too difficult time ... and her breathing wasn't super labored afterwards, so we continue with celebrating the baby steps.

We went to see her this morning and we thought she was getting the line out of her neck and put into her arm. But they couldn't get the line all the way through, so they just replaced the neck line. UGH. That one is important because it is where she gets the nutrition. She is still eating pureed foods and today she got to have some coffee officially! (I snuck her some yesterday shhhhhh) She was asleep when Jen and I switched out (i have a few work meetings this afternoon). More updates later in the day!

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Mom had a pretty sleepy day. We think the early in room procedure of trying to place a new line in her arm and failing and then followed by putting a new one back into her neck, really wore her out. We did play wordle together tho and I read some of the messages from everyone. Please keep them coming! Hopefully tomorrow she'll feel more herself. I leave early Sunday morning so I'll be with her a lot of tomorrow. Here's hoping I get to see her transfered to step down. 🤞

Sept 19, 2024

Linda had a full day today, what with physical therapy, multiple visits with the respiratory therapist and endless nurses and drs liasons coming in and out.

She had a good liquid supper, which she finished most of. except for the tomato bisque soup which is good tasting but quite a bit after drinking all of the hot tea, cold milk and grape juice and melted ice cream. She may have ruined her appetite!

Dr Unai came in to see her at 8:45 PM! and he seemed happy with her progress but said she may be in icu another day or so.  She was not a happy girl when she heard that news as she wants to get out of there, out of stepdown and get home to Beaumont.

Sept 18, 2024

Mom was a little sleepy today.  Physical Therapy tried to work with her today but I heard she got out of breathe.  So, she was put in bipap for a little bit today.  It woke her up a little bit more for a while.  Per Dad, she got to eat dinner this evening; soup, tea, milk, grape juice, and warm ice cream.  Oh, and, a mixed berry smoothie.

We were told Step Down tomorrow.  We'll let you know then if that happens.

Sept 17, 2024

Jess it here!

~

Two negatives I can think of: still nothing by mouth and no Step Down Unit yet.

Otherwise, she was more awake today than previous ones.

Sept 16, 2024

And somehow Mom got Shingles!  She was moved to a Negative Pressure room for precautions.  Upside...the room is bigger with big windows and a view of the greenspace Cleveland Clinic has between two buildings.  Mom seemed a little more awake today but still took many naps.  We were told it's from her BUN (blood urea nitrogen) was high and it can cause sleepiness.  The doctors are treating it carefully.

Cross fingers everyone she goes to SDU (stop down unit) tomorrow or the next day!!!

Thank you for the messages.  Keep them up.  I think she secretly likes them.  

😉

Sept 15, 2024

An update for today is coming soon!

~

Per Dad, Mom was pretty sleepy today.  The only exciting thing was getting a new room, Q5-12.

Sept 14, 2024

Dad and I to move out of our current apartment to move into our new one.  We packed everything up, parked the care in the parking garage, then went to see Mom.

Mom was in her chair getting a breathing treatment with breakfast waiting for her.  Since we didn't have breakfast, we got something from Starbucks for ourselves and we even got something for Mom just in case she might want to try something with flavor.  The only thing she wanted was the coffee.  She did have some of her breakfast but not a lot so she's still getting nutrition through an IV.  

She was still pretty tired today so we were brain storming on ways to pick her spirits up.  She received a unit of blood which she needed medically but Carlee, Mom's nurse today, suggesting taking her to the roof patio.  We went up there after Mom ate some lunch, Dad and I came back from lunch, and Carlee did everything she needed as she needed to come with us.  It was chilly in the inside portion of the patio but outside was beautiful.  It was just the right amount of breezy, sunshine, and a clear day so you could see Lake Erie.  We think Mom liked the little adventure getting some warms and fresh air but she still seems a bit tired.  We came back in at her request then Dad and I got ready to move into our new apartment.  

I stayed behind to get settled and Dad went back to the hospital.  I'll ask him if he has anything new to report update you.  Cross fingers Mom can move to the Cardiac Step Down Unit early this week!

Sept 13, 2024

We got to the hospital and Mom was up and in her chair.  There was a decent looking breakfast BUT it was very bland.  She did eat some cereal though.  Mom was still pretty tired from yesterday but she wanted to play a card game.  Unfortunately, it was interrupted by medication time and a breathing treatment.  After all that, she was tired so I put the cards away and she fell in and out of sleep.  Mom didn't want to stay in the chair anymore so she got a little PT with a walker to get back into bed.  Some leg exercises ensued then lunch came.  Lunch was a gross tuna sandwich.  Thankfully there was a protein shake.  Mom didn't have much of an appetite today so the nutritionist is going to cut down on her IV diet to see if it makes her hungry.  And Dad and I were encouraged to bring her food from the cafeteria.  

I left early to get ready to move out of the current apartment to the next one tomorrow.  I left her my iPad with all my entertainment apps logged in so she could watch more interesting.  Burlesque was on when I left.  If anything has changed or there is more info, I'll ask Dad to publish.

One more drain taken out and the last one was clipped to be suctioned every few hours.  Dr. Unai stopped by and stated she'll be moved to step down early next week.  Apparently the other doctors were ready to get her out of ICU. 

 😁

Sept 12, 2024

Mom was up and in the chair again this morning.  Apparently some patients are woken up at 4:30AM and put in their chairs.  Good things she's mostly an early riser.  Mom was more awake today and eating breakfast.  She drank most of the liquids and a little bit of her cream of wheat.  Physical therapy wiped her out though as she walked five feet with one rest.  Later she had some pudding and for lunch she had salmon with rice, a sort of ensure drink, and some diced pears.  She also had one of her IVs taken out today.  I believe it was the atrial line.  So still making good strides.  An update will follow tomorrow.

Sept 11, 2024

Lots of positives today.  Where to begin...

When I got to the hospital, Mom was in her chair and according to Sarah, her nurse today, she got into the chair.  With help of course because she's still weak.  Other days, she was lifted into and out of bed into the chair.  On rounds, she was taken off epinephrine and there was talk of taking the epigastric tube out and switching up her nasal cannula.  Mom was able to feed herself with just a little bit of assistance.  She did have the epigastric tube taken out, PHEW.  And, her forced air nasal cannula was replaced by a different one which allowed less air to be forced.  Mom was also taken off the insulin drip and will just be getting shots every 6 hours.

On the so so side of things, Mom's left hand was swelling as well as her abdomen.  The doctors said sometimes this can happen.  And I think they are going to treat her but I don't know when.  Until then, Mom has been advised  to move it as much as possible.  I came back to the apt. before Dad who texted Mom was put back on bipap.  We were told this could/would happen.  Otherwise she did well today.

Thank you all again for the kind words and encouragement.  Take care everyone.

Sept 10, 2024

Sorry for the delay.  I slept all day and I was asleep when Dad came back.  He'll update when he's more awake this morning (9/11/24).

~

Yesterday went well with a few hiccups, she keeps having trouble with her co2 levels and keeps being put on the bipap mask, something she does not like.

Dr Unai stopped in to take a look and seemed pleased with her progress.

she was put on a liquid diet but I never saw a tray, whatever, maybe someone overruled that. I was allowed to get her a coffee tho so I went down to one of the TWO Starbucks in this building. She did enjoy that but did not finish it.

she had one of her drain tubes taken out which should make her a little more comfortable

during the day, while chewing on some ice chips Linda began to cough causing the nurse to take them from her, telling her she was to refrain from ice or liquids for a while.  After a while Linda asked me for a sip of my water, I had to tell her no, something that neither of us enjoyed.  After a while the nurse brought her in a new cup full of ice and Lin and I talked about the incident and she said that she understood my position.

I left after the nurses shift change and came back to the apartment after a kiss and a I love you.

Sept 9, 2024

SO...today when I went over to see Mom, I saw a note taped to the outside of her room...NPO or Nothing By Mouth.  The staff wasn't playing today.  (I know I'm speaking of this lightly but I DO take it seriously.)

Anyway, Mom was on bipap when I arrived and sitting in the chair.  Dad told me she did a little word find puzzle with him but kept on interrupting to get ice or water from him.  He didn't fall for it.  After the bipap came off, Mom got some ice from the respiratory therapist.  But that was it for a while.  Later on I asked Sophia, Mom's nurse today, about giving her some more, whatever she was comfortable with us doing.  Sophia said Mom could get about two ice chips at a time and I had to make sure she was swllowing. (I was making sure all along as well as asking her for 1-2 big breathes between requests for ice.)

A physical therapist(PT) started working with mom and gave us some exercises to work with her when she's not around.  The PT said Mom was stronger than she expected her to be.  Too bad her lungs are having a hard time getting on the same track.  

Mom went back on bipap a little after 1PM.  We told her to nap so time would go by quicker so she did.  I left to get ready for a virtual appointment.  I'll ask Dad to post more when he's back.

♥️

Sept 8, 2024

Dad was with Mom most of the morning.  I was doing some housekeeping.  So he might come on here after me and add anything more.

Per Dad she said she is fine today.  She was sitting in her chair sucking on iced ginger ale.  Later he told me they got in trouble for her getting too much ice and liquids so they had to hold off for a while.  Mom had apparently coughed really bad which Kyle didn't like and got worried.  Before I got there she had to go back on bipap and she was in and out of sleep.  I gave her more ice and water which was okay for a while but then we got in trouble again.  Needless to say Mom wasn't happy.  The battle ensued a little longer then Dad and I went for dinner before Kyle kicked us out.  When we came back from dinner, we were informed no more ice or water from family/friends and only the nurses could do it.  I left after a while as I couldn't bear the look on Mom's face for not getting what she wanted and understanding the health care teams on the situation.

Take care everyone.

Sept 7, 2024

When we arrived this morning. she was back on the bipap. (Boo!) The nurse on duty is determined to get her sitting in the chair today. He said it can't hurt. And she needs to get off her back!

I asked when they could start weening her off the epi. He said "have you not heard of the mainstay Dr Unai? He is VERY meticulous. He is always watching. We don't touch anything until he gives the word or we get yelled at immediately" I feel like that's a great thing - we want him to be heavily invested! 

The nurse also said right now they are pushing 60 units (?) of oxygen through the cannula (which we knew). But they don't send patients to step down until they are at like a 4. So we have a ways to go. But they did just take her off the sodium drip. She was on that because when patients have brain swelling like she did it could be from sodium or the ammonia levels..and now that she is way more responsive (and the ammonia levels are down), they don't feel like they need it.
--

She made it to the chair! And was fairly vocal the entire time we spent with her. She asked for ice cream, but sadly, that wasn't on the menu. But, great news - she is back to being allowed ice chips. So she was crunching away. She was able to answer all of the cognitive questions (what's your name, what year is it, etc) but later when Jen was sitting next to her she asked "am i really at Cleveland Clinic?" 🤣  We've left for a bit midday to allow her some more rest. Her CO2 numbers are steady climbing so she needs to be on the bipap more than the last few days. Our hope is that as her body heals, and she becomes more and more herself, she will really be able to get her breathing under control. 🤞

--

We made it back late afternoon and she was so awake and had a sparkle in her eyes that we haven't seen in a while. She was much more aware of us and her surroundings. She honestly looked like her old self again...just with way more tubes and wires coming out of her. And it's so strange to have her so present but not say much... VERY unlike her... But baby steps. 

They had just taken her off the bipap when we got there and had moved her back to the bed from the chair. The nurse took her CO2 numbers and they looked "perfect" which he said was why she was so lucid. It looks like she will be on bipap overnight now so she keeps up the positive trend. Nurse Kyle was very happy with how she was looking today (he was one of her nurses earlier in the ICU stay) and said he may try to get her to march in place tomorrow. He's very motivated by results...it was his idea to get her in the chair today. 

More on those darn ice chips --- boy oh boy is she obsessed. We were all basically her drug dealer for her one love on earth - ice chips. I joked that it would be nice for her to act like she was happy to see us instead of just being a vehicle for her ice chips. 🤪 When Nurse Kyle would say "ok, that's enough" her eyes would get so big and as soon as he would look the other way, she would motion with her eyes towards the ice chips. It was hysterical. 🧊🧊

A member of Dr Unai's team came by and was also very happy with her progress. He asked her to lift her head up and she had no issues. She was also able to lift her legs up and hold them with no trouble. So happy she's getting her strength back.

--

Dad and I (Jess) went to say good night to Mom and she still looked great. I can tell she is over all the attention and constant poking and prodding. But I'm taking it as a good sign. When we left she wanted the cup of ice and spoon. She was determined to self administer her beloved ice chips. She said "I wanna do it myself"...she was giving it all she had. Such determination. It was so good to see it. 

I fly out tomorrow and I am so happy she has shown such progress. Can't wait to hear how much more she makes. ❤️ Linda Johnson is my hero ❤️

Sept 6, 2024

This morning Mom/Linda was pretty awake.  She made little responses and even asked for me (Jennifer)!  She wanted something to drink and I think she either thought I would oblige or make the nurses do it.  Unfortunately, she is not ready to take anything by mouth.  A speech therapist stopped by rinsed out her mouth a bit, got her to move her tongue around and say ahhhhh!  The therapist thinks once Mom is weened off the forced oxygen more she'll be able to work with Mom on swallowing.  Still giving Linda/Mom time to rest between visits from us.  We don't want to over do anything.  Thank you all for the good vibes, prayers, happy thoughts, etc.  The Bob Johnson Family really appreciates it. ♥️

--

At one point in the afternoon, Mom said "this isn't real. I didn't have surgery" 🤣 and when she asked how much longer she'd be here, we said 2 days and she rolled her eyes in exasperation. We're starting to see her personality again. 🥰

--

When we went over to say goodnight this evening, she asked where Jennifer was. (Jen decided to hang back to give her a rest from all the visitors) When we said Jen was back at the airbnb, her eyebrows went up in her typical Linda Johnson worried face. We had to explain to her that Jen was fine and she just needed a rest. So sweet that Mom is so worried about all of us. 

Throughout the visit, she was asking for water and would try to regulate her breathing more when prompted. We reminded her that one of the biggest blockers to her recovery was getting her breathing under control to expel the CO2. 

When I checked in with the nurse for an update, she said her CO2 levels were unfortunately slowly increasing and they may need to put her back on the bipap overnight. TBD on that. We will inquire when we go in for the visit tomorrow. I also asked about timing on getting out of the ICU. She said Mom won't be leaving until they can ween her completely off the Epi which helps her heart beat as efficiently as possible which gets the rest of her body in fighting form (my words, not hers). SO we'll keep an eye on that for sure. 

She told us she loved us when we left and we said goodnight. She was definitely ready for bed by the time we left.

Sept 5, 2024

The nurses today aren't as ... communicative. But we've decided to take that as a "she's out of the woods so doesn't need as much attention" (and not "dear god you Johnsons are a handful)...

What we did learn - She didn't wear the bipap all night and her CO2 levels were only slightly elevated. Yay! Besides that her night was apparently uneventful. And today will be the same. No procedures planned. Just monitoring and slowly weening off the air. 🤞🏼🤞🏼 I think we may have turned a corner.

When Dad and I (Jess) visited this morning, we *think* we got a "love you guys" and we *know* we got a "I wanna go home"...she also said "I want to go home" again later in the visit. Dad commented "looks like you're feeling better" and she said "oh yeah"...so she's getting that Linda Johnson sarcastic fire back! 🔥

~

This visit we got a little more out of Mom.  She still says she wants to go home but she added Happy Birthday to Robin.  She says she loves us then we let her rest.  We'll go back in a couple hours.  

The doctors said her heart echo looks good, her ammonia levels are back to normal and her O2, CO2 are back to normal.  Her mental status needs to be worked next.  Crossing our fingers she's out of ICU by Monday.

~

we were there at 8:00 this evening watching bobby flay on the tv, one of Linda's favorites, waiting to be allowed back.  when we got to her bed we asked if she wanted bobby on her tv, she shook her head no quite vigoriously.

she kept repeating that she wanted to go home, we told her to get better so that she could.

the nurse told us that all her signs and tests were good and that she seems to be getting more responsive and vocal!

Sept 4, 2024

This morning, she was sleeping a lot. They inserted a feeding tube in her neck so they could start giving her nutrition. They did a CT scan on her last night and they "saw a shadow" (possible stroke?). Jen spoke to a Dr that said they aren't overly concerned about it. And they still believe that the ammonia levels are the biggest reason why she hasn't been very responsive. They have an eeg monitoring her brain waves. We spoke to an occupational therapist that said she didn't see anything to indicate stroke. Both her sides had the same strength. She also opened her eyes for her.

We are reevaluating how much time we are spending at the hospital right now since we all feel like she needs a break from constant interactions / us talking to her. We also are realizing that we are no good to her strung out from hospital coffee and lounge over head lighting. 

All the staff keep reiterating that she just had a major surgery and she needs some time to recover. We all had our expectations too high when she was responsive and talking a bit on the second day. She is making steady progress and her CO2 numbers are back down. So we just have to be patient. It's very hard. 

--

We went back in mid day to see her. Jen had Rob and Edie on the phone and she seemed to respond. She also opened her eyes more and even turned in my (Jess's) direction when I talked. The RN also said that the medicine amounts / levels she is currently being given are now typical of someone who had that same procedure. (As opposed to the amounts she needed before today) So that seems like a good sign too. Plus apparently she hasn’t been on the bipap since this am and her numbers are still good. Ammonia levels are trending down as well, and he said he thinks that might be the reason she is more lucid (relatively). I also asked about the MRI and he said that they will probably still do that, but not while she is in ICU since those results will have no baring on her course of treatment. 

--

Tonight when we went back to say goodnight, she was zonked out. But I'm (Jess) a monster and woke her up.  She opened her eyes again!  We called Rob and the girls and Pearl, Grace, and Edie took turns updating Mom about their days. She's looking so much better! YAY!

Sept 3, 2024

Earlier in the day, they said her pH was stabilized. That's the good news. The bad news is we were told that she has a viral infection and so we can't touch her. She's on an antibiotic for that.  She was also retaining ammonia due to her liver disease. That's been the main culprit (apparently) of the lethargy / unresponsiveness so they've given her something to help combat that.  It's a hard road.  But 2 doctors said that all these issues are "acute issues due to post op" .... She has a lot of positives but she's working against some negatives.

Another doc also came by and said she is making slow but steady progress. And is trending in the right direction. He said they knew it would be an extra tough post op because her surgery was so intense. They expect her to be in the ICU for several more days. 

They also did a CT scan of her brain, just to cover their bases. 

Sept 2, 2024

No real progress today. She's been sleeping all day. And we did a lot of waiting around for the Dr to come and see what they say.  They are going to put her on a feeding tube tomorrow.  Which weirdly is a step in the right direction. She won't eat the liquid diet they have because the oxygen tube makes it way too hot to eat / feel comfortable. So they are just going to kinda force feed her to get her strength up.  Hopefully that helps wake her up a bit / get her moving forward more.

Sept 1, 2024

Mom continued having trouble breathing, retaining more CO2 than she should be.  This was the biggest hurdle today.  She was rotating between a bipap and a nasal canula. Chasing the way she feels over chasing the CO2 numbers seems to be the treatment protocol.  Eventually, we found out Mom was diagnosed with COPD or some other lung disease.  So once she can get her breathing right, her recovery should go smoother.

Unfortunately she hasn't been very responsive to us today and sleeping a lot.

Today they also wanted to start her on a liquid diet.  But she was having a hard time eating because the air tube was making everything hot.  It's a delicate thing because the air has to be warm so it doesn't fry her nose and throat. 

We also learned today that Mom is VERY sensitive to pain meds. She was quite out of it all day and non responsive.  Thankfully a bit of NARCAN later and she woke up from her drug induced nap. PHEW.

Aug. 31, 2024

She was talking a little in the beginning which got our hopes up for a quick recovery.  However, she became very lethargic and unresponsive to verbal commands.  

The Dr wasn't happy with her progress.  She wasn't breathing well on her own causing her to retain carbon dioxide and it was thought she might have to be intubated again.  After some tests, a gastric bubble was found so they inserted a tube through her nose and into her stomach to relieve the gas then a bipap, similar to a cpap mask was used to force air (O2) and expel the CO2.  Issues are slowly starting to resolve, PHEW!  Now it's just more monitoring.  And she has graduated to getting ice chips which I think is a very good sign of improvement.

Aug. 30, 2024

Dr. Unai said the surgery was a success.  He removed the egg-like pericardium, fixed the tricuspid and mitral valves, clipped the left atrial appendage, and replaced her pacemaker and leads.  We didn't get to see Mom until really late and she was still intubated.  Only two visitors at a time so we took turns letting her know we were there and then turned in for the night.