David is officially listed on the transplant list! I received a call at 1:40 this afternoon saying insurance had given the approval to go ahead and list. After providing them with his SSN, David was added to the list. There has been much rejoicing on the unit and everyone is excited for David as he starts the next chapter in his story. This will be his waiting chapter, or in Swiftie terminology, his Waiting Era. There is no way to know how long this will be, but we must be ready at a moment’s notice. In the meantime, we will continue to work with him to help give him as normal of a life as possible and keep him as strong and healthy as possible so he’s in good shape when he does get the call.
David will wait in the hospital and not at home. Although children have gone home on milrinone before, they have never sent an infant home on it – usually teenagers and older children maybe 8 years and up. This greatly helps us to have some idea of what life will look like in the coming months, and we don’t have to think about David losing his 1A status.
Otherwise, David had quite an adventure filled morning. The helmet guy from orthotics came and adjusted his helmet. David’s had significant growth since he got his helmet – he said 8mm of growth! The helmet is doing its job so far and his head will continue to get more rounded over time. However, David still had quite of bit of redness from it, so he adjusted it again. Hopefully no more cheek redness – it’s probably hard to adjust for that as his fluid balance is in a state of constant fluctuation.
After his helmet was fitted, David went down to radiology to get a new NJ tube placed. Yesterday, the tape on his current tube was getting a little loose, and his overnight nurse went to retape it. However, I think it must have been having trouble getting the tape off the tube, so she tried to cut it. Next thing you know, the tube got a slight nick in it. She taped it up and it seemed to continue to work, but it was probably best to get a new one. It was probably good it was replaced anyway, since they put it on the other side of his face. The side it had been on was starting to get a pressure sore. However, now that it’s back on the right side, David has to be watched like a hawk. He keeps grabbing the tube and pulling as hard as he can. If that tape has any give to it, David’s going to rip it right out!
As for fun things today, David got to sit in his high chair and do some clean play with food. We just left the food in the ziplock so he could squeeze it around, but not make a mess. David also tried to get caught up on his Harry Potter chapter, but he did not succeed in that goal. He also got a visit from the music therapist and is working hitting the drum. We also got in some cuddles this evening.
His team had to figure out how to handle his oxygen needs today as well. Some team members wanted to give him some more blood to increase his hemoglobin. His transplant team did not like that idea and wanted to give him metolazone to get fluid off of him. Those other team members did not like that idea. So they met in the middle and changed up other diuretics instead. One is a potassium sparing diuretic. We’ll see how he responds to that and maybe he will drop some fluid, and hopefully once some fluid is off, will finally be able to wean some respiratory support. David definitely does not like his high flow cannula, but it’s providing him the support he needs.
They also did increase his amino acids a little bit. We’ll see how he handles it. He been gaggy lately and I’m having trouble gauging whether it’s been more with the increase or not. When he coughs he’s been bradying a bit and dropping his heart rate again. I thought that was a thing of the past but David likes to show off what he can do. Same with dropping his oxygen saturations. Little turkey likes to drop them, get the alarm on the monitor to sound, and then hear his nurse’s phone ring with the alarm. After he hears the phone, he immediately brings it back up. His nurse is right next to his bed the entire time, but it’s like he’s testing whether he still has it in him to call them when he wants – especially when they are busy with his friend next door.
“Little turkey”? I love it 💕
Exciting changes ahead … praying for more good days filled with hope and love.
What a blessing to know he will be on the transplant list, prayers continue for all of you and the family of the possible new heart.
So glad he’s on the transplant list. We’ll keep the whole family in our prayers. Good work mom and dad with the dedication you are taking each step and making everything positive. Love and kisses 💋.
Prayers for calm during the waiting period and every time the phone rings🙏🏻