This will be a shorter post but wanted to post a brief update on whats been happening! Please be patient with me as I am so inconsistent with Noah updates and still figuring out new routines for all of us as Noah's medical needs have changed and become more demanding. Right now we are in this waiting game- where there are no updates sometimes which I am thankful for because it means his heart is remaining stable, but also I am terrified for whats to come next and anticipating it all is very over whelming.
After my last post- we ran in to more insurance issues which delayed Noah being listed for transplant by two weeks. It was a very nerve wracking couple weeks as I fought with the hospital and insurance to figure things out STAT. There were lots of heated conversations but Noah was finally listed on July 5th as a 1B. I thought everything was good to go.
But then....we received a call July 11th. We were extremely disappointed to learn that UNOS had denied the appeal to have Noah listed as a 1B- this means that right now Noah is listed as a 2- and to me that means that it's with 100 percent certainty that he will need to go inpatient soon, as the time on his heart is ticking with every beat. The wait list is long, so this is a bit of a time gamble, because the reality is, he can decline at any moment (fast) and there isn't just a heart waiting for him right when he may need it. There is also no intervention that is available to him (He is not a Berlin candidate due to the condition of his heart, this device is used in many cases to bridge the gap and decreasing mortality while waiting for a transplant).
I did reach out to Boston, Texas Children's, and CHOP in Philadelphia for second, third, and fourth opinions, especially on the VAD, and each doctors approach was consistent.
Since then, I have accepted this, and know that it is what it is and a multi month hospital stay is in the cards soon. Brandon and I have been trying to wrap our head around all the logistics of this, and prep what that looks like as our family will truly have to conquer and divide during that time. B needs to travel for work weekly especially if we are looking at a possible 6 month hospital stay, those expenses add up quick. Someone will need to be at the hospital with Noah 24/7 and also home with Elodie. We are relying heavily on family coming in from out of town and staying with us for an extended time to assist during all of this. I know at the end of the day, we will figure it out and we have a community here willing to help. I truly am so thankful for every friend and neighbor we have met here in Austin.
The last few months Noah has had transplant clinic every two weeks. These can be pretty lengthy appointments: they do blood work, echo and a weight check. These appointments have become a little traumatic for him- to the point where when we are in the car and going through any place that has a car garage or tall building, the begins crying and saying he doesn't want to go to the doctor. We are working with our medical team and psychologists to work through this with him. 2 months ago he started on Entresto. Since we have tampered up and currently he is on 40 mg a day which has really helped his energy level so far! This is a "newish" med in the pediatric cardio world but it truly is called a miracle drug for a reason!
We are planning another increase in the next couple weeks to continue to try to medically manage his heart failure.
We also had to change all of his feeds that he was currently receiving via gravity to the pump. It took a lot of work to get him off of the pump, so this felt like a huge step back to have him attached to the pump nearly all day and night, but honestly he has handled it so well. We have more than doubled his daily volume intake and he has slowly started to put a little weight on. Yesterday he hit was about 26 lbs! Which is a big jump from where he was just a couple weeks ago. With this change we have had to transition to co-sleeping with him since he is attached to the pump all night (he gets so tangled in the pump cord) and requiring for one of us to get up every couple hours for feeds- whatever we need to do though, we will! His heart is still unchanged since the med addition- his function and leak. His liver enzymes looked great this week- and other blood work. His pro BNP was 1500 so a bit of an increase from his baseline.
On top of Noah's 9 therapy appointments weekly, transplant clinic, and all of the other normal life things to keep up with, we are just trying to have fun and do normal things!
After talking with the team, we decided that it's the perfect time for Noah to get to chose his Make A Wish. We met with the coordinator previously, and he asked to go to Disney. We leave at the end of September for 6 days and he hasn't stopped talking about it. We will have his MakeAWish reveal party this next weekend with friends and family, where they will hand flight tickets to him and read him the itinerary!
He says he is "so excited" with a massive smile on his face. His vocabulary has flourished and he has become quiet the "funny guy".
We have a list of characters he wants to meet, and have spent lots of time watching videos and looking at pictures of the parks and rides that he will soon see. This will also be the kids first plane ride!! So many updates and pictures to come. We will take Noah to transplant clinic a couple days before we leave- prayers for a stable report so we can go spend some time with Mickey <3
OH AND NOAH CELEBRATED A THIRD BIRTHDAY!
Thank you all for hanging in here with us! So much love to each and everyone of you as the new school year begins, and the holidays approach.