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November 17....surgery tomorrow at 7:30AM :(

posted Nov 17, 2010, 9:50 PM by Sean Molby

Sorry for the delay in the update. I have just been enjoying my time with the kids as we have not had as much going on the last two weeks-this is a long post so be forewarned!!

 

Tristan is doing well; he is such an amazing little guy. Last update was through Thursday, the 4th I think, so today we will begin from a couple of Fridays ago. Nothing much happened on Friday the 5th except we got ready for Briahnna’s slumber party. She invited a few friends from her new school to sleep over on Saturday. It went really good. The girls all had a blast. It was really nice to see Briah so happy. She has been through a lot with all of this and she has been so amazing it was wonderful to be able to do something for her. So we had a house full of pre-teen girls on Saturday and Sunday morning.....somehow we managed and the house wasn’t burned down!  J


Monday we had physical therapy. Jaci was very happy with Tristan’s progress and he did really good during his session. He did get a little fussy because he got hungry but as soon as he got some food in his tummy he was back to his happy, cooperative self. The rest of the day we just chilled out and relaxed.

 

No appointments on Tuesday but we had home health care nurse on Wednesday. She was astonished at how good T looked. She said this was the best he has ever looked and was curious if they were still going to do surgery. T’s new weight is 18 pounds 9 ounces and he is just shy of 27 inches. His blood pressure is still good and he sounded awesome. She was very happy with the visit and how well Tristan seems to be doing!

 

Again no appointments on Thursday but we made up for it Friday. T had occupational therapy Friday morning. He did a little better this session, he managed to stay awake through it at least J Nicole worked with him some more on taking a bottle but Tristan is just still not interested. She did however figure out that it is because he has forgotten what to do with a bottle. He does fine until the milk gets in his mouth and then he freaks out because he can’t remember how to suck, swallow, and then breathe. So, that is really frustrating, especially since that was my fear from the beginning with not feeding him by mouth for so long. I am actually pretty upset because when I voiced my concern about him not remembering what to do, CMH OT assured me that wouldn’t happen as long as I kept working with him with a pacifier. Ya, whatever! I am really irritated right now with them and angry at myself for not talking to Dr. Kaine sooner about feeding Tristan-even though I had no idea what it all would mean for him at the time. I can not express how ticked off I am going to be at CMH OT if he doesn’t get this skill back. K, sorry really frustrated with them right no so I just needed to take a second to vent…

Anyways, Nicole did what she could and had a pretty good session with T. After his OT we had to go to our appointment with his pediatrician to get his RSV shot-thank GOD we don’t have to pay out of pocket for those, they are anywhere from $1800-$3600 per shot (it depends on where you get them) and Tristan has to have one every month until RSV season is over-two this month because it is too important for him to get and he needed it before surgery and since it will be a bypass he will need it again after surgery too.  And poor thing because he is so big they had to do it in 2 shots so he had to get stuck twice for the same shot and those needles are freaking long. Other than the shot they didn’t do much. Said he looked good and told me they would call to schedule his appointment for his shot next month!

 

We got to go eat lunch with grandma and grandpa again on Friday after his pediatric appointment. It was good and T wasn’t as fussy as I thought he would be after getting his shot. Ella was even cooperative and not as terrible two acting as she has been. Poor thing, I can hardly blame her, her little world has been turned upside down, so considering, she is doing amazingly well. I am thankful for the help my sister has given during all of Tristan’s hospital stays by taking in Ella along with her four kids and so far she is the only one aside Sean and mom that she will leave me for. Without her there is no way I would be able to stay with Tristan like I need to…so thank you sooooo much Tam!  

 

Last weekend wasn’t too eventful but we had lots of fun. Sean had to work on his car some more so the kids and I went out to grandma and grandpas for the evening on Saturday and to get us out of the house. We had a lot of fun. And mom and Briah even talked me into playing Wii for the first time. It was a lot more fun than I though it would be. I hadn’t laughed that much in a long time- I even managed to beat several of the high scores…yep, I still got it- ha ha! Dad spend most of his time holding Tristan and Ella- he is such an amazing Papa and I am so glad the kids have him! Those are some of my best memories of my childhood, are the times I got to spend with my grandma and grandpa so it is really important to me that the kids have that. Briah decided to spend the night but Ella and T came home with me.

 

Sunday we went for a long walk through our neighborhood and to the park. By the time we got there mom and dad had brought Briahnna home so they met us up there…well hey met us on the way up there but then dad took Sean back to the house to get the van while we continued walking so that we would be able to play longer at the park. We all had a blast at the park. Tristan got to swing in a baby swing for the first time and we got some really good pics of him. Sean will post them later this week…. I think…. J in fact he got some really unflattering pics of me and mom acting like children on all the play equipment LOL but the kids REALLY enjoyed it all. It was wonderful to just get out and be a family and to watch the kids have so much fun with grandma and grandpa! It was especially fun watching grandma get on all the play equipment, hee hee!!

 

Monday the 15th was PT again, T only lasted about 30 minutes and then got grumpy L I fed him a little and he calmed down but then went to sleep! We had attempted to do a co-treat with PT and OT but as he fell asleep about 5 minutes after Nicole got here it didn’t quite work out the way we wanted. We spent some of the time charting where is progress is so we know where we were at when his PT starts back up after surgery.

 

Yesterday was a slow day no appointments just me and the kiddos hanging out and cuddling some more. Today we had pre-op. It is always a LOOOOONG day when it is pre-op. We got up to the hospital at 10AM and they weighed (he is now 18 pounds 15 ounces), measured (same height), checked blood pressure, oxygen saturation rate (T was at 85), and took all the other important vital info…we then get to talk to a myriad of hospital staff: surgery nurses, cardiology, anesthesia, and then do labs and get x-rays. They asked for T to be in another clinical study, this would be his fourth! I also found out that he is the 75th kid in the world to get a new type of tissue patch with his Glenn…kind of an uneasy thought until she explained it all to me. I also found out that we were misinformed and that another one of the first four Hybrid kids IS still alive and doing well. It was a little heart angel after T that unfortunately didn’t make it. That doesn’t really make me feel any better but anyways... We finally got to leave today at 2:15PM. I did talk to cardiology and before they cut into T they will do an internal echo, ( I think they called it that) they will basically go down his throat and check his PAs…somehow… and make sure there is still no way they can get a cath to go through. IF they think that there is now a large enough opening they will cancel surgery and retry a cath but they said that was really unlikely and even though T is doing really, really good right now it is possible for his collateral lines to be supplying enough blood to his lungs to enable him to function normally (well as normal as a hypoplastic kiddo can anyway).

 

Today’s appointment was actually quite educational for me. I also found out that aside from being the 4th baby to go through the Hybrid at CMH he is only the 120th in the nation to have it done and it has been shown to be a safer way for the more critical HLHS babies to make it through. Usually they do the Hybrids on premature babies. T was actually rather old to have undergone it but since he wasn’t pre-diagnosed in utero as most babies are and the delivering hospital didn’t catch his condition either despite all his signs (both being long stories) anyways because of all he had to go through he was too critical to go the traditional route; it is kind of scary to know that it is such a new way to do things… but I also found out that the obstructed PA is something that is associated with the Hybrid as it has become fairly common for the Hybrid babies to have to have their PA reopened after the second stage, just wish we could have been a little bit more pre-warned as we just are really not ready for this surgery.

 

I think the hardest part is how good T looks at the moment. This will be the first surgery that he will have to have that I can’t just look at him and see how much surgery will help him…it may sound stupid but it is a little easier to let them take him back if I can see how much he needs the help. Anyways it has been a real struggle the last couple of weeks. I just feel very overwhelmed and extremely scared! I can not begin to even express how scared I am…I am really, really, really, really, really, really, really, really… I think you all get the pic… ready for this one. I told Sean I am not sure if I can let them take him back this time……I just can’t lose him

 

T is finally completely weaned off his sedation meds. Just in time for surgery! He hasn’t even been as fussy as I had figured he would be. He is actually in good spirits and smiling as often as he used too! His naps are a little more regular and I think he even is sleeping better than he was on the meds. Go figure!

 

My house is a complete disaster but it was a sacrifice I decided to make this week in order to spend as much time as possible with Ella and T! I did what I could during afternoon nap but otherwise I said screw it. J I don’t want to look back and say I wish I would have held him more or why couldn’t I have just let the laundry go for another day. My kids right now are more important and the time I can spend with them invaluable! Besides I cleaned it really good before last surgery, was gone for a month, and came back to a pig sty LOL! Anyways I have to go into each surgery hoping for the best but still preparing for the worst. L

 

 

It is not something I like to think about but I do have to face the daily realization that tomorrow may be a day that T isn’t with us any longer. I hate that the thought of death is a constant companion in my head but I know too many heart moms and heart angels to not accept it as a possibility. It is scary and oftentimes overwhelming! I hate that my family is going through this. I hate that my son has to be in so much pain and go through so many terrible things. I hate that Briah has to worry about her little brother. I hate that Briah and Ella have to be away from us for so long when T is in the hospital. I hate CHD!!! It is not fair that anyone should have to go through this. But I am thankful for EVERY SECOND I get with my son. I am thankful for every smile, every cry, and every hardship. Because I know as much as they suck they are still a blessing because I could not have him and that thought is worse than anything I have to go through. That is a pain I don’t want to have to experience; in truth I am not sure I am strong enough to handle it if anything were to happen to T. So I just have to keep trying and working. I have to keep reminding him how much we love and need him and hope that God will keep giving us time with him. Surgery is tomorrow. I am NOT ready for this again but we don’t really have much of a choice. Hopefully T has had enough recovery time! Please keep him in your prayers as we still are in need of lots of them. I will try and do daily updates as we are in the hospital.

Thanks again for all the support everyone. I love you all.

 

 Huge heart hugs and thanks from me and my family!

 Christy

 

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