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September 26- finally at home!

posted Sep 26, 2010, 10:18 AM by Sean Molby

We are FINALLY home. Home Sweet Home!!


It was a long day yesterday. A LOT of waiting around. In fact, that is all it was but since we are home we will take it.


They drew his Lovenox level (blood lab) at 1:15 PM yesterday and then we were told that we would have to wait until they got the results and then we would be discharged. So we waited…and waited…and waited…and, well you get the picture. The results didn’t come back until 3:45pm and they were low…bummer but really all they needed to do was increase the prescription dose and then we could go. Or so we thought!

For some reason it turns out that the CMH pharmacy could not fill the script it had to be delivered to them from Home Health Care. So, after 2 more hours of waiting and repeatedly asking when do we get to leave the Home Health Care delivery person calls us in our room and says she is STILL waiting for the orders but if we would like she could deliver the meds to our house tonight. Well, you didn’t have to tell us twice we finished up our packing- the fridgerated stuff and things we had to keep out till we left and then had to wait for the discharge papers to be sent up. Finally got them, read through them, and signed em, and then they said we had to wait for med delivery cause home health care just called and said they were on the way up to CMH…not sure why since she said she would bring to our house but whatever I didn’t care we were getting out! We finally walked out the door with three wagons full of stuff at 7:45 pm and arrived home at 8:15.


It was a pretty good night. The best he has had since surgery, He did not have his normal 1AM withdrawal episode but he did have a coughing fit that caused him to throw up at 3:40 AM- he is okay and went back to sleep fairly soon after and stayed asleep the rest of the night. He awoke in a good mood smiling and happy this morning. He definitely knows he is home. AND HE LOVES IT!!!! J


Getting used to his new meds was a bit confusing- he has a total of 32 meds he gets throughout the course of one day! He used to only have 11. So I had to sit down and write a med schedule so I can make sure not to forget any.

He gets:

Captopril, Ativan, Lasix, Mylicon, Zantac, and Motrin at 1AM.

Methadone, sween cream, and Tylenol at 5AM.

Captopril, Ativan, Digoxin, Zantac, Lasix, Mylicon, Lovenox, sween cream, and Motrin at 9AM.

Methadone, sween cream, and Tylenol, at 1PM.

Captopril, Ativan, Zantac, Lasix, and sween cream at 5PM.

And then Phenobarbital, Digoxin, Lovenox, Methadone, sween cream, and Motrin at 9 pm.


 Poor baby gets over 36 mL (7+ teaspoons) worth of meds a day plus two shots L but he is such a trooper and handles em all like a man!

In case you’re wondering what the meds are for:

-Captopril is for lowering blood pressure and increasing cardiac output it is vasodilator. ---Ativan is a benzodiazepine sedative (part of his narcotic weaning schedule)-it reduces withdrawal symptoms he will be on it until Nov 23.

-Lasix is a diuretic-it helps him pee J.

-Mylicon is for gas- he gets about 13 mL of air pumped into him daily when we check placement for his feeding tube.

-Zantac is for reflux and to reduce acid production.

-Motrin and Tylenol help him with the body aches and pains just from surgery and lack of movement from being hospitalized (sore muscles) and from his headaches that he gets from how his heart is now working-the headaches should ease off in time, they should actually be gone by now but he still seems to get em.

-Methadone is similar to morphine (part of his narcotic weaning schedule)-it reduced withdrawal symptoms he will be on it until Nov 21.

-The sween cream is for his wrist- he is now allergic to surgical tape and when they removed some from his wrist found a severe rash underneath-it is painful and irritating for him but is getting better.

-His Phenobarbital is for the possible seizures that he had at 5 days of age, he has shown no other signs of seizures since then but they felt it safer to keep him on it just in case-hopefully he will be off it on October 5.

-Digoxin is also a vasodilator but it helps the pumping pressure of his heart-it keeps his heart from having to work so hard.

-The Lovenox is for his blood clot- it is a blood thinner he will be on it for another 2 months and then switch back to aspirin.


He is still on 120 mL feeds every 3 hours with 320 mL continuous overnight-for now- and is down to only 45 minutes per feed but should be down to 30 minutes by Monday night. We will start trying to space his feeds out a little more slowly going to 4 hours in between each and eventually cutting out his continuous feeds overnight all together. I am not sure how long that will take- he likes to eat so it may take a while to start spreading his feedings out to be how most 5-6 month old babies eat like.


He should start his OT and PT home sessions next week or the week after. He will get 3-4 OT per week and hopefully at least 2 PT but not completely sure yet- he should get at least 1 per week to start and if he keeps showing signs of improvement we should HOPEFULLY be able to start bottle feeding him again and introducing cereals and then baby foods. Tiny baby steps with Tristan. He likes to go slow and move at his own pace so we won’t be rushing him.


Lots of appointments over the next month: A GI follow up on 9/30, his 4 month well visit (1 ½ months late) on 10/4, a neurology follow up 10/5, his cath procedure plus intervention 10/7, Lovenox level check 10/8, Lovenox level check 10/14, G-tube/nissen surgery consult 10/14-surgery for that will probably be a week or so later, hearing and special care clinic 10/25, and a Hematology follow up and Lovenox level check 10/27. He also has his next OPM (swallow study) on 12/1 so we really need to start getting stronger so that he will be able to pass that- if he fails again I am not sure what will happen but I know that they WILL NOT let him do anything orally for a long while if he fails it again. So crossed fingers and lots of good luck needed so that he will be able to do okay with that.


It will be a super busy next couple of months but it will be beyond wonderful to have my family all back at home again. I really miss my girls-they come back today from my sister’s. With luck we will get back into the groove of things in no time. I think it will take me about 2 weeks to get my house clean again tho.

Jeesh for not being here in over a month somehow it got trashed- go figure! I left it fairly clean- at least I thought I did! 

Also the votes are in it was almost unanimous - I will do daily updates…at least as much as I can. Some days may get skipped but for the most part it should be daily.


Thank you everyone for all of your support and prayers throughout this last month- well actually since April. We are still not out of the woods. A lot of things can happen, both good and bad, until the next surgery here in a couple years. Tristan has a LONG road ahead of him but he is a definite fighter and has a strong will to keep going. He is a more complicated case of HLHS than most (that is what I was informed of this last week) - I think it is mainly because of his first few weeks of life. They did not expect him to make it to his first surgery so the fact that we are at and through number 2 is a blessing!


He is much stronger than they gave him credit for and he continues to amaze me with his strength, determination, and veracity daily! He is one AMAZING little boy- and I am so proud to be able to say that I am his Mom!! Remember to keep him in prayers, especially with his next procedure being October 7- they have not given me a time yet but I will keep you all posted ~Christy