Day 12 - Palliative Care

 I already mentioned that the surgeries for hypoplastic left heart syndrome are palliative. Meaning they don’t directly fix the problem, they’re a work around, providing a livable solution to an otherwise grave problem. 

I explained that after Jack’s heart surgery on day 5 of his life, he came out of the OR on ECMO. ECMO was meant to be temporary. It helps his heart while they spent a few days diuresing him (aka removing excess fluid he accumulated during surgery). 

On day 9 of Jack’s life, they felt good about the amount of fluid he had lost, his weight was done, he was making urine like a champ. So they decided to try him off of ECMO and see if his heart could pump on its own. 

We had to leave his room while they did all the actual de-wiring of the ECMO lines to his heart. We got lunch with friends who came to see us. We were extremely hopeful. All had gone really well until this point. 

We went and saw him that afternoon once they were done. He was doing alright. The nurse had to be really on it with his meds and titrating them up or down to keep his blood pressure in the right range. The junior surgeon was in and out multiple times that afternoon to check on him and talk with the nurse. The two of them would talk conspicuously- not wanting to give us cause for alarm. 

We left that afternoon very hopeful. He was still needing a ton of monitoring and was still not out of the woods but we felt hopeful. 

We got a call around 8 that evening. Giving calls from the hospital always got my heart racing immediately, my stomach in my throat and worse cause scenarios in my head. I don’t remember who called but they were trying to be calm but you could tell they were very nervous. They said Jack was not doing well, his heart could not pump on its own and the surgeon is on his way to put him back on ECMO. 

We tried not to freak out. But gathered some thing and went to the hospital. We had to wait in the waiting area (that dang waiting area - so many hours in there) because they were hooking him up to ECMO and it has to be a sterile environment and we couldn’t be in there. Once they were done the junior surgeon came out to talk with us. This is one of those conversations that I imagine is not the reason anyone entered the healthcare realm but it is a disservice to not have. 

The surgeon told us that he wasn’t sure what they would be able to do to make Jack’s heart pump on its own. We pried for more answers and clarity and wanted his honest opinion of what was going on. He told us that every child he has seen that is unable to come off of ECMO doesn’t survive or needs a heart transplant. 

The last words anyone wants to hear about their 9 day old. 

We were obviously wrecked. 

We had no more questions. He sat there in silence with us for a few more minutes and then left. 

We finally got to go back and see Jack that night but we were a mess to be brief. 

I don’t remember what day exactly but in the few days following that an attending doctor (that we weren’t fond of already) came in to try to talk with us. She started off with “Would you all be willing to have Palliative care involved?” 

I wanted to punch her in the face and instead scoffed and said we are not doing that because he’s not even two weeks old and we are not talking to palliative care at this point or ever. She tried to explain that palliative care isn’t end of life care - I told her I know what palliative care is but the answer is still no. She then proceeded to ask what Jack was like in the NICU. “Was he on a ventilator?” No “Did you get to hold him?” Yes Etc etc. I assume trying to relate? But only dug her hole deeper as she revealed that she didn’t read any notes from before he came to the PICU. 

Palliative care does a lot. They help manage meds to keep kids out of the hospital. They help families make quality of life choices. They help families decide when enough is enough when it comes to intense treatments. 

But I was not ready to negotiate at this point. That was my 9 day old baby - I didn’t want to hear about the second tier options. 

A resident tried to offer palliative care to us again - can’t remember when exactly. I told them no, they persisted to tell me why we should allow them and Ike stepped in and said leave us alone. 

I think it was during Jack’s last week of life we agreed to have palliative come in. They stayed for maybe 2 minutes, didn’t chat much at all and then left. At that point, we had little to talk about anyways. Or They heard I’d harshly refused them multiple times before and walked in on egg shells. 

I think we had no problem settling into the role of parenting where you confidently defend and protect your child. We knew where we were mentally and tried to stick to that and not be peer pressured in to a decision we didn’t stand behind. I am saying this as a person who works in end of life care - often at work I am the one initiating the palliative conversations! So I am not against palliative care. I just knew we were not going to be pushed to go there yet. And we felt confident in that.