June 18, 2024

I am not sure how to start this or what all to say but I wanted to make sure we let everyone who has followed David’s amazing life know everything. 

He had a CT yesterday which more or less confirmed what the neurologist thought. Large damage and the part of our brain that makes us us is gone.  This was the news we expected.  Even though the neurologist also said that “the damage is less than I expected.” I want to be clear that he also followed up in no uncertain terms that even though they give way more leeway with children this young, the damage was severe and did still destroy that which makes him David. He never gave any indication that he or anyone can or has come back from something such as this. However, this also though kept alive a tiny voice in my head that I was hoping would be silenced of “what if”.

So today I asked to speak with the transplant team to help me be at peace. They told me exactly what I was expecting to hear and allowed me to go forward and know that we gave him the very best chance and that to keep him going on ECMO would be not fair to David. What they told me is that because of the damage to his brain they do not believe he would survive a transplant and so they removed him from the list. This allows me to know that even if there was some function somehow left, all we would be doing by continuing on would be just keeping him going until his heart gave out. This could be any time since his current physiology wont last that long, Thursday being proof of that. And pulling along him in heart failure is not fair to him. 

We also may never know what caused his heart to fail this time. There are no signs or symptoms that anyone has missed that have been uncovered during an investigation. The one theory we heard was perhaps there was a moment of too much backflow in his tricuspid valve that it caused the whole spiral. I’m not sure. They did compare this back with his first crash in February, and it looks almost identical. Perhaps, David’s heart just never gives any signs that it is struggling and then gives out without any signs. It’s hard to say. 

So we will enjoy a few more days with him and then let him go. 

Not sure how to transition but I do want to add some highlights of today.

When David first arrived on the CVICU we were given a heart pillow that we thought was fun but honestly had no clue what to do with. Well one of his very special nurses told us after she helped save his life from his first crash that it is meant for those who cared for him to sign it and leave a message. Up until today we had almost exclusively only had his most often seen bedside nurses sign it. Today we realized we would like so many more to sign it; however, since he already had so many nurses that have been special to him the smaller pillow was almost completely filled (it was almost completely filled before this latest incident). So they found him a much bigger heart pillow, which has now been passed around to doctors, surgeons, NPs, therapists of all sorts, Fern and her mom, all the nurses, and anyone else special in his life from here that we could find. We will try more tomorrow to make sure no one was missed within our power. 

David also got a bath to make sure he smelled nice and kept looking as handsome as anyone could.  David got more Fern time today in bed. We made a few more keep sakes. Also he had some music time where Eli and Anna also joined in for a time in bed and played along. Before they joined in though, the music therapist also played David some Taylor Swift music since she knows he’s a Swiftie (Love Story, Enchanted, and Fearless). After dinner I brought Eli and Anna down to the End zone for two reasons, it could be their last time there and they seemed to have have some energy that needed burning. 

Tonight I will attempt some cuddle time in bed, we will see how I fit or if I need to just sit at the foot of the bed like Fern as some (Jessica) have suggested haha. (This is Jessica now – Adam needs to drape his head over the edge of the bed too for the full Fern effect. Perhaps snore a little too – that shouldn’t be too hard for him. We also inquired on which NP’s will be on staff tomorrow, and David’s wear pink buddy is working, so David will be sporting his pink blanket for her when she arrives as a surprise.) 

Over the last few days he has been visited by family, friends, and so many that have cared for him while we have been here. I have trouble putting into words how amazing everyone has been and how loved our little guy is. The number of people he has touched is astounding. Today that included an OT who is currently out on maternity leave, but David bonded with her baby before she was born. This was a special moment, since she said David is the only kiddo she has come back to see. He was also visited by at least 3 other bedside nurses who have cared for him on their day off today, along with aunts and uncles. I consider so many who have cared for him a close friend if not family at this point, this hospital is truly a special place.