Day 16 - Surgery day #2

I have already shared that Jack had heart surgery on his fifth day of life, then was unable to come off of ECMO (heart and lung machine) a few days later, then palliative care was offered to us. In the days that followed that we were mostly just waiting. Waiting to see what the doctors were going to decide and do, waiting for Jack’s heart to show any signs of improvement that could mean he would tolerate coming off ECMO. At this point he was still fluid overloaded and making plenty of urine so he was losing fluid everyday, looking more and more like a baby and less like a sumo wrestler. 

The surgeons didn’t really have an answer as to why his heart couldn’t pump on its own. They never said the words “we should have done the other surgery” because all of the measurements of his heart told them they should not have done the full blown HLHS surgery. But essentially that’s what we assume should have been done. They discussed Jack’s case in grand rounds at length. They decided to take him to the cardiac cath lab where they could get a better idea of what’s going on in his heart. 

The entourage needed to get Jack to the cath lab

His failed trial off of ECMO was on July 20. We waited until July 29 for him to go to the cath lab. We waited with about a dozen family members while he was in the cath lab. Our entire family in the waiting room stood at the windows as a team of 10 staff rolled him by to go down to the cath lab. The possibilities that day were: they find nothing and then there is nothing to fix/no solution or they find something and take him to the OR and fix it - neither felt like great options but we hoped they could find something fixable.

Waiting room popsicles after we learned they found the issue & he was going to the OR

They called a couple hours in to the cath and said that they could still see an issue with his aortic arch, it was too narrow and restricting blood flow (I don’t remember how exactly). We were all elated that there was something fixable but also terrified that he had to go back to the OR again. 

He finally got out of the OR late that evening. The surgeon met with us and told us what they found, how it went and then also shared that on the chest x ray the radiologist saw a small area of necrotizing enterocolitis (bowel tissue that is infected and causing cell death) - not ideal and certainly not ideal when he is coming out of the OR and already a fragile mess. 

He looked really really rough that evening and for the next few days. 

In those first few days after heart surgery on babies they monitor their brains with an EEG (put leads on their head and neurology monitors results) because of the high risk of silent seizures (a seizure with no physical signs of a seizure.) Jack had a few seizures during the first 48 hours. Another serious concern that we could not do anything about and did not know the impact it would have on his brain just yet. 

He also stopped making urine - he had received contrast during the cardiac cath which may have hurt his kidneys and about 100 other things in his first 17 days of life that could have destroyed his kidney function. Or he may have been born with low kidney function and we didn’t see the impact until they were stressed to their max. No one knew and Kidneys are so particular. 

I think the doctors waited 24 hours to see if he would make urine and then they started dialysis - which meant another giant machine in the room doing a job for another organ that wasn’t doing its job. 

So all that to say - they found an issue, fixed it but the rest of his little body was falling apart in the process. 

If you’re still following - phew - I’ll pause there for now.