May 13, 2024

Today was more of a difficult day – but David was a rockstar and handled everything thrown at him. He’s the strongest person I know. We do not know God’s plan, but things fell into place in such a way that reminds us He’s been in charge of the timing all along. 

David was a little fussy when I arrived, and so I put him into his mama roo, and he started smiling and wiggling all over. He seems to enjoy that. We reviewed our MRI consent, met with the anesthesiologist, and then David left for MRI. He was going to stop by the cath OR first to be sedated and get intubated before going to MRI and then back to cath lab. After David left, we were able to meet with our cath doctor to go over everything he was going to do in cath lab. David’s list of things was rather extensive so he was eager to start as soon as David came back from MRI (which could take over an hour since David needed a full brain MRI). The things on the list for the cath were to check all the pressures throughout the heart, arteries, and veins with oxygen and if the numbers are not sufficient potentially using nitric, check out the tricuspid valve, do an echo, check for collaterals and potentially plug them, and balloon any vessels that may need ballooning. A preliminary guess for time of procedure was 3 hours, maybe more. 

MRI went off without any issues starting at 8 AM I believe (who knows if they were running on time). At 9:38 we received a phone call saying that David was in the cath lab and that they were about to begin, and that he was doing well. The doctor asked if there were any issues that were seen on MRI that he should be aware of. Hearing nothing, he went ahead and started the procedure. At 9:53, David was administered a large bolus (dose) of Heparin (blood thinner). At 9:55 the cath lab received a call from the ICU. David’s MRI unveiled a large hemorrhage in his head and the procedure needed to be abandoned. 

Imagine our shock when around 11, we’re being summoned to a conference room to have a discussion and that David was on his way back to his room.  We were just waiting for our next call at this point with an update on how things were going. We get into the conference room where there are several familiar faces, but also several new faces, so everyone introduces themselves. We had David’s nurse practitioner, his charge nurse (who has been his bedside nurse in the past and knows him well), the cardiology fellow, David’s cardiologist, the neurologist, the CV pediatric doctor, Child family life (and Fern), and then a bunch of new friends from neurology and neuro-surgery. 

They did preface that clearly this is a pressing urgent manner to have this meeting so urgently and with the number of people there. The neurologist ran the show and showed the images. It is very obvious that David has a large amount of blood pooled in his head – all of varying ages. It’s unknown when these bleeds started, but it could have been a couple weeks ago. Everyone was in absolute shock to find this as it was not on anyone’s radar. The good news is that the blood does not seem to be pressing on his brain. The bad news is that his brain is smaller than they’d like to see which is why it is not pressing on his brain. Neuro-surgery will follow him now, and if things change, they may need to drain the fluid. 

The big concern at this point is that David had just received the large amount of blood thinner in cath lab and how was that going to affect this bleed? David ended up having a second full brain MRI this afternoon around 1:15 PM to compare with the findings from earlier in the day. Thankfully, that MRI showed mostly the same images (his head was in a slightly different angle). So he’s stable. That blood thinner has not seemed to have caused any new bleeding in his head. 

Since David had received that amount of blood thinner in cath lab, his cath doctor tried to get as much information he could with the limited time he had. He got the pressures for the most part. He did notice some pulmonary vein stenosis on his left upper vein. If he had more time, he would have ballooned that vein. He also looked at the output of blood his heart pumps to his lungs vs his body. In the end, he gave us a list of the various things that need to be met in order to be a Glenn candidate (the next surgery), and David was not hitting those marks. His pulmonary pressures were quite high on oxygen (he didn’t try with the nitric, but it’s unlikely to lower it as much as is needed), David has severe tricuspid valve regurgitation, and his cardiac output of the blood he sends to his body is smaller than they would like. They did not find a large collateral in cath, but they found a small one, so they put a plug in it. 

In the end with the cath findings, his cardiologist put in a referral for David to get started on the transplant process. We are not sure if he will meet the criteria for a transplant – he’s received a lot of blood products so far and may have a lot of antibodies, and with everything else he deals with, he may not be in the best shape to handle it. This afternoon we received a call to get the process started and gave insurance info and signed consents. Insurance approved the transplant evaluation, so the first step is a genetic blood test to see how much he may reject. We have a meeting with the transplant doctor later this week to learn more about the whole process. 

While David was sedated this afternoon, he also got a new NJ feeding tube placed. His old one has been trouble for a while, so it was nice to get him a new one. It took two attempts, but hopefully it works well for him again. Late this evening, David also got extubated! It sounds like neurology and neuro-surgery are ok with quick brain MRIs, so he doesn’t need to be intubated. David will likely have an MRI tomorrow afternoon, and then maybe another one later this week just to keep a close eye on his head. They tried an ultrasound this evening to see if that would work good enough, but unfortunately, it did not show much. 

So as difficult it was to get this news today, it was good to know it. We can’t help but wonder what would have happened if he got the MRI earlier. In March, when we first wanted it, would it have shown any bleed? Then the goal posts were moved to get it after he was extubated, then it was needing less respiratory support, then it was after he was weaned from sedation meds. There was always something. His echo last week showed a large collateral that forced this cath. What if the echo never showed that? What if we were sent to the floor? What if we were sent home? Would we have missed all of this? Once he was on the cath schedule, his awesome nurse (Dani) remembered he needed an MRI and pushed for it to be scheduled in conjunction with the cath.  The neurologist who has been following David most closely had just returned from vacation. Would someone new have had to learn about David if she was not on service this week? 

We can’t help but wonder what would have happened if his MRI occurred after his cath. He would have likely received heparin throughout the procedure – would that have made it worse? If the cath doctor had received word of the bleed prior to starting or if he checked the images himself, the cath would have been canceled entirely. However, it wasn’t and we still got valuable information from it, allowing the transplant process and discussion to begin. The cath doctor had another long cath case after David’s, so hopefully his day was not quite as long. In the grand scheme of things, we can see how God was guiding everything for this moment. 

The long term goal is still to get David home. They restarted him on milrinone again due to his low cardiac output, and he will remain on it now. He will go home on it. I’m not sure exactly how that works since it’s a continuous drip, but we’ll figure it out. 

We still have David’s care conference tomorrow afternoon, and then Wednesday morning we are meeting with the transplant team. I don’t know who told David there were more people he had not met, but he figured it out today. David, you have met everyone at this point, we don’t need to meet anyone else.