Noah Comes Home!

In this case, home is the Ronald McDonald House but we aren't complaining. One day short of 2 weeks post transplant and the Dr's said he was ready to be released. Six weeks after he was born.
We went to the hospital Friday morning not expecting to discuss discharge until Monday but Dr. Campbell (One of the best Pediatric Heart Transplant Surgeons in the Nation and the one who did Noah's transplant) had been by that morning and said all he had was a superficial infection of a stitch in his incision (not a blood infection) which meant he could be taken off the IV antibiotics and switch to Oral which all translates to him being ready to go home.

After getting all the supplies organized and getting oxygen tanks and making 3 visits to the pharmacy to get all his meds, we finally left about 7pm. Just in time for us to get back to our room and start his 8 pm medication (which took me 1/2 hr to measure up and double check). He was sent home on the following meds:

Neoral twice a day. He will be on this the rest of his life. (to suppress his immune system)

Cellcept twice a day. This is for 6 months and then we switch to Immuran. He will only stay on this long term if he has rejection. (to suppress his immune system)

Captopril 3x a day until we can ween. (to help with blood pressure and heart function)

Lasix twice a day until we can ween. (Diuretic to help reduce fluid retention)

Methadone twice a day. We begin weening on Sunday but should continue for at least 2 more weeks. (because he was on a morphine drip for so long)

Nystatin three x a day for a month. (to prevent thrush in transplant patients)

Prilosec once a day until he stops throwing up. (because his meds make him puke alot)

Keflex four x a day until next Tuesday. (to treat his infection)

Bactrim twice a day on Fridays, Saturday, and Sunday for the next 4 weeks. (to prevent a type of pneumonia common in transplant patients)

Shane thinks its wrong to send a kid home from the hospital on so much medication and expect the parents to do all that without screwing it up. But we are so happy he is home, we'll give him anything we need to to keep him healthy.

So far we have been doing great. He is very content and only gets mad when you wipe his bum. He LOVES to be held and LOVES his head stroked more than anything. He sleeps all night so I have to give him 100% of his feeds through his feeding tube. He just wont wake up. But he has been doing a very poor job at eating during the day too so most of his feeds are through the tube for now anyways. I actually don't mind having the tube right now. It does make night time feedings MUCH easier and I love that I don't have to get him to swallow all these cruddy medicines. We do give the Neoral and Cellcept by mouth so he can get used to it since they are long term and the nystatin because it has to be all over in his mouth, but everything else goes in the tube without a fuss and then we just hope it doesn't come back up. The Cellcept makes him sick which is very common and usually goes away right about the time he gets to stop taking it. Go figure.

Here are a few pictures OUTSIDE of the hospital.

Alright, I guess you are going to have to wait for the pictures. I've tried to upload them over 10 times and I keep getting an error. My Internet connection is super slow tonight so I will try to post them again tomorrow. Sorry. But please check back because he is the cutest little thing, you just have to see the pictures.

The current plan is we go back to the hospital every Monday and Thursday for an Echo, EKG, blood tests, and a checkup for the next 3 months. If no rejection, then we get to go home the beginning of October. If he has rejection, our 3 months start over again. After we go home, he gets the same tests done once a week at Primary's for 6 weeks then every other week for 6 weeks then if everything is still good we go every 4 months... Transplant definitely doesn't mean everything is OK after that, but it's SO much better than what we started with.

One last thing... I had asked the social worker to inquire about the apartment that the Ronald McDonald House has in case we could move to that since I just couldn't figure out how it was going to work with Lilly and Noah all in one small room. She called but unfortunately the Apartment was in use already. But it just so happened that the biggest room in the house was becoming available that same day so we got to switch rooms. This room is SO much bigger. It has a wall separating the sections of the room so we have more privacy and less noise and it has 2 walk in closets. It's just MUCH better since we will be staying here for 3 months with an infant and a toddler. And this all happened the night before Noah was released. Heavenly Father definitely knew our need and provided a solution. This new room has been wonderful. Lilly has a place to sleep all her own, so I can move around without being absolutely silent to deal with Noah and she doesn't wake up. I can even have a light on now so I can see what I'm doing. This helps out SO much and relieves a ton of stress I was having. So I am SUPER grateful.

Stay tuned for the pictures....