As many probably already know, Noah was admitted last Thursday 2/16 to begin his wait for a heart inpatient. It's been a crazy last few days going back and forth trying to balance both Noah and Elodie.
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Update 2/16
It’s been a long day.
One we knew was coming, and I’m not sure we would have ever felt ready.
After 226 days waiting for a heart at home, Noah needs to be inpatient until his miracle comes. I am just getting Noah settled in to his room after a long day at clinic, coming home to “load up” and let Noah say bye to home.. and then wait for our room in the icu.
Before we even got to the room he was telling me he was ready to get in the car and go home because he missed Elodie and Nahnee and Popee 😭
Walking through the ICU brought back all the feels. I couldn’t help but cry and then Noah started crying when we got to his room asking to go home. Child life came by and gave him all the fun toys and he quickly had his smile back and loved the attention. His responses to the nurses have been quiet hilarious 😂
Noah just had an IV placed and will begin Milrinone (a heart failure medication) right now. Tomorrow he will go under sedation to get his PICC line, there he will continue his milrinone through that, and likely TPN and lipids. Brandon is out of town but will return tomorrow so we will continue to switch out and have a list of really amazing friends and family that will be helping with a few nights and days throughout the week❤️
The team has prepared us for the wait; that is typically, at LEAST, 4-6 months long inpatient as a 1A (the highest) status. So here we are. Doing whatever we have to do to give our boy a chance at a better quality of life 💔
Update 2/17
Last night Noah rested pretty well considering the ICU never sleeps. He did wake up and vomit most of his feeds which is not much different than any other night the last few months. He then had to be NPO from midnight on because we knew he would be getting a PICC line at some point today.
Around 10 pm ultrasound came to do a full extremity ultrasound to check for clots (since he has a history of them) in prep for the PICC. I was not super happy since he had just fallen asleep. They only were able to get the lower extremities and luckily Noah slept right through it! It took over an hour and a half.
This morning we had lots of visitors and Noah and I played with some of his new toys, and yaya came to play and spend the day with him. They upped his Milrinone and his sats have went up nearly 10 points!!. He then had X-ray and the upper extremity ultrasound that was around 1.5 hrs and then an echo. His heart function remains severely depressed with severe tricuspid valve regurgitation. I confirmed with the team today that Noah’s now listed at a 1A status on the transplant list. 💔
He went to IR to get his PICC line around 2 today. Placing this requires him to be sedated. This line was placed on the right side of his chest and will be used for his IV medications. They will start continuous feeds and he will also start TPN and lipids tonight.
I went home this evening to spend some time with Elodie. And Brandon and my mom are at the hospital tonight ❤️ he is still pretty heavily sedated and sleeping so I’m hoping tonight he will just continue to rest.
Update 2/18
Noah was a party animal last night and stayed up until 4 am. Good thing it was my moms night at the hospital 🫠😅 I came back this morning to take over and Noah was awake and ready to play. We got him out of bed for the first time since Thursday evening and he played for a bit on the mat until he got tired. I put him back in bed with help from the nurses but he fought through nap time and played on his iPad. It’s the weekend so it can really go by slow since there isn’t much activity and visitors.
Speech came by and did their evaluation. Noah ate a couple bites of pudding. He has never swallowed anything more than liquids and purée/pudding textures, but he’s even stopped doing that the last few months, which I’m assuming is because he just has felt icky and his increased vomiting.
I was happy to see that he wanted to eat some pudding and had the appetite.
He had a bit more weight loss today but he also had feeds held all day yesterday for his PICC procedure so no one’s too concerned yet.
We started feeds last night and today went up to 20ml/hr continuous as well as increased his TPN and lipids. We will continue to increase feeds via gtube Q12.
We are hoping that will put some weight on him. So far no vomiting which is HUGE for Noah. We are still on such a small dose of feeds, but we will take the small victories.
He lost an IV today and his forehead NIIRS so he no longer looks like karate kid 😜
It’s only day 3 and we are exhausted. I am starting to panic on how we will manage the next 6+ months like this. I feel so torn constantly. Wanting to be at the hospital every second to know what is going on, be with Noah, talk to the doctors, etc… but I feel a huge guilt to not be with Elodie. Every aspect of this is hard!
I have read each and every message and text, even if I haven’t responded, and we all truly appreciate it and feel very loved and supported. ❤️ we couldn’t do it without our village, and that’s a fact.