February 23, 2024 – Update 4

We apparently got a slightly different story from the nurses versus the doctors who did David’s procedure. So this is what we know about how David’s day went (to the best of my memory)…

When David arrived in the cath lab, his oxygen saturations were in the 50s. He ended up not getting the bronchoscopy – he’ll get that later this weekend (either tomorrow or Sunday if it is deemed he still needs it – they will see what his chest x-ray looks like in the morning). Either a quick exploratory cath was performed, or perhaps before that began, David’s saturations were down to the 40s. A blood gas sample was sent to the lab which confirmed that is where he was sitting (one of his extremities was showing 18%, but David has been a tough read, but the lab confirmed 40%). It was determined that his saturations were too low and quickly going down, so he would be placed on ECMO to stabilize him before continuing the cath. 

At this point, the surgeon took over. He reopened his chest since that would be the quickest way to get him back on ECMO, and I believe 11 minutes later, David was fully supported on ECMO again. Now that he was stable, there was no longer a rush to try to get a resolution quickly before he coded again. This allowed the  cath team to take their time to really explore and take pictures of everything. What they found is that one pulmonary artery has a tiny bit of narrowing, but it’s very minor and likely not causing any issues. However, his Sano shunt stent had some issues – it could have been compromised from the compressions the other day and then further compromised when his chest was closed, but it is unknown. Regardless, the blood was not traveling through it as well as it should. The cath team ended up putting a second stent in that shunt. This new stent is longer and made of a different material which should not deform as easily. We are hopeful that this is truly what David needed. 

David is at an odd age where the size of the shunt that should be placed is unknown. A newborn gets a 5mm shunt and it lasts 5-6 months usually. However, when he placed the 5mm shunt the day of the Norwood, David said it was not acceptable and demanded a larger one. His surgeon emphasized that it is better to go too small than too large. Too large sends too much blood to the lungs and sends your heart into heart failure. Being too small is better because your body can easily survive until the next surgery. Now that the stent is holding open David’s shunt, we have to hope that it has not made the shunt too large that his lungs are flooding with blood. They will watch that closely the next few days. I should have asked what happens if it is too large – does he go back to the OR for a smaller shunt? They cannot try to make the shunt smaller because it has been found that just creates clots, which is no good either. 

This was a big day for David. Too much excitement for him once again, and he needs his rest. So, he’s going to rest now, and let ECMO fully support him for a couple more days. We hope that he wasn’t without oxygenated blood for too long that it affected his brain (or other organs) or caused a stroke. We’ll find out in time. That was the goal of getting him on ECMO as soon as they could to try to avoid further issues. We’re thankful to his team of doctors and nurses who have been caring for him. The nurse he had all week is going to wonder what in the world happened when she’s back with him on Monday – she was really looking forward to seeing him with his chest closed up. Maybe Monday will feel like  Groundhog’s Day for her and he’ll come off ECMO again. 

Unbeknownst to me, his night nurse picked up tonight’s shift when he left this morning. We thought he was going to have some well-deserved time off. During David’s first hospital stay, I loved coming in in the morning and hearing about how David was a rockstar for him overnight. Now David has been nothing but trouble. I hope David finally gives him a quiet night. I can’t imagine the shock he received when he arrived to find David still being settled into his room back on ECMO, when he was probably expecting to find him with a closed up chest instead. We just are so thankful for everyone who had helped David during this tumultuous time. 

Before David left for his cath, his cardiologist stopped by as she had just gotten word that his chest closure did not go according to plan. While he was in his cath, a chaplain stopped by and prayed with us. Fern came by with her mom and gave us some puppy cuddles which were excellent. We also had another member of David’s single ventricle team stop by. Everyone is rooting for him, and you can definitely feel the support. Maddie our puppy definitely wouldn’t make it as a facility dog – I had to tell her I needed some cuddles tonight because she just wanted to play play play. She eventually settled down to give some love, which is just what we needed tonight.