June 14, 2024

I’m running on an hour and a half of sleep so hopefully this is coherent. Well, I started this post, and I think Adam is going to take it over, so hopefully he can help fill in the details. 

Today had a somber tone that followed it around all day. This is absolutely not where we wanted David to be, but at the same time, we are so grateful that he was in the CVIUC when his heart failed. We can’t imagine what would have happened had he been somewhere else. In total, he received chest compressions yesterday for 74 minutes before he was finally running on the ECMO circuit. This is a very long time, and has left us with more questions than answers. One of the biggest concerns is how has this affected his brain. 

David was removed from the active status on the transplant list and placed on inactive status. He will not lose any time he has already accrued, but he will not gain any more either and he will not receive any offers (he hasn’t had any yet anyway). With these outstanding questions, we would not accept a heart for him currently. Every day he will be re-evaluated as to whether he is in a spot to switch back to an active status. We want to know the status of his kidneys and more about the extent of brain injury before determining if transplant is in David’s best interest again. 

One of David’s surgeon’s stopped by with 3 main questions they would like answers to, but which answers may not exist. I remember 2 of them, but I think the first is How has David’s other organs been impacted? The other two are Why did this happen? and How to prevent it from happening again? At this point, we want to give David some time to recover and see how his brain, lungs, and kidneys are affected. If they are ok, then the next step is a VAD (ventricular assistance device), which in David’s case would be the Berlin heart. If that is the route, they would like to hook him up this week. 

At this point, I am very worried about his brain function. His lungs are completely full of fluid, which means during compressions, all the blood was being pumped from his heart to his lungs and not the rest of his body, thereby flooding his lungs. We’ll have to give it time and hope he got enough blood to his body and other organs that they do not have too much injury, but if I’m being honest, I’m very fearful for his head. David did have a chest tube surgically placed this afternoon to relieve some fluid from his lungs. 

The one thing we know – David is incredibly loved. He’s loved by his family, friends, and nursing staff. The outpouring of love and support has been felt. David’s nurse last night happened to pick up a shift in the PICU and when he heard that David crashed, he came over and said he was taking over David’s care. I have no clue how or who he found for a replacement for his other patient, but we were so incredibly grateful to have him watching over David. I know I was able to go home at 2 AM this morning and know David was in incredibly good hands. 

David’s nurse today (and for the weekend), is another one we love and trust. He’s very attentive to all the details and gives David such high quality care. Once again, we felt so blessed that David was receiving top of the line care. David had several nurses who were working with other patient’s today stop by to see him. He even had two nurses who are on their week off come in to check on him. News spreads quickly. David always seems to love the attention, but there must be less dramatic ways to grab some attention.

He was hooked up to an EEG monitor to watch for seizure activity. He’s had some repetitive movements, and I’m not sure if they have confirmed them to be seizures or not, but his seizure meds are starting back up. Overnight, David also had his eyes closed all night, then today, he’s been blinking his eyes all day. His eyes don’t focus on anything, and it’s a mystery as to why he’s been doing that all day. 

Adam’s updates

Jessica got the majority of what happened today but I will add some of the things from this evening. We got a X ray this evening and it has shown some good improvement with his lungs after the tube was placed.  Due to his rhythmic movements they have added in another anti-seizure med that he was on before. From what I can tell they are not convinced that it is seizures but if it helps it is better to try than to let the behavior continue.  

As the day has gone on his labs have been stabilizing and his blood pressure and heart rate has looked good. They did have to replace his NJ tube and early on in the day he has some pink/red streaks in a poopy he had which probably was from the stress of crashing and he hasn’t had a poop since. They seem to be happy though with his pee output after they pushed a lot of fluid into him during the night/day and all the medication he is on. 

Eli and Anna spent the day at daycare until I picked them up around 3, I brought them to the hospital and we ate dinner in the lounge and then we played outside. They recently added a new part to the outside playground at the hospital and they had fun playing in what I think is a dog house and also the music structure. When we arrived Eli really wanted to see David but did ok once he knew he got to see mommy. The new play area also helped to keep them happy. 

I also want to just restate what Jessica said. We are so lucky to have such a large group of people who care for us and David. The availability of family and friends if we need is amazing. The care team he has here regardless of how many times they have directly taken care of him or some even none at all that have checked in on him, it is hard to put into words how grateful I am for each one of them(you). Just know that as you keep us in your hearts, minds, prays, and hugs that we keep you in ours as well. 

We love all of you so much.