Step One…Again

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December 13 2015

Overnight update

Micah had a good night. His numbers are all good and his blood pressure and heart function are good. Head scan was normal. Today they are looking to start weening him off of the drugs he was on for the surgery and start getting him to shed water again. Just taking to easy and slow. #TeamMicah

Daytime update

Micah had a good calm day today. They slowly started to ween him off of the epinephrine he was put on during the event yesterday. His potassium has been a little low so they are adding some to his TPN, which is nutrients since he isn’t eating yet. He’s been moving around a lot and opening his eyes, in general he isn’t big on sedation, it seems like they have to give a lot of it for him to calm down, and they are likely going to try morphine tonight since it worked fairly well in the NICU and it can help with another thing. His blood pressure is also a little higher this evening than it was this morning and the morphine should help with that as well. Nothing big, everything still looking pretty good. Praying for an uneventful and quiet night.

#TeamMicah

My Thoughts

The night and day following his cardiac arrest were uneventful, on purpose. Given what had happened the day before no one wanted to try and push anything, which was absolutely fine with me since we didn’t know if there were going to be any resulting effects from his “misbehavior”, as the doctors referred to it. He had a brain scan to see if there were any obvious problems caused by his arrest. The scan came back “clean” which meant that there was nothing obviously wrong.

The goal now was to get him to a point where they were absolutely confident that if they closed his chest that it would stay closed. This is not as easy a call as you might imagine, simply because the chest being open as it was is undesired as a risk of infection. So as a doctor you are weighing the risk of infection against the risk of complications from closing the chest too soon. We already knew what too soon was for sure, but we didn’t know when the “too soon” risk would be less than the infection risk. So the goal was to move toward closure as soon as possible but not too fast because we already knew his system wouldn’t handle it.

So we didn’t really stop moving forward, we just slowed down. Cut back on medicines, move toward extubatiom, get him to be less swollen. Some things change fast on their own when you change medicine or dosage, but most of the time the changes are gradual and the results are slow to come. Patience is a virtue and it’s not one we are born with, you have to learn it. You have to practice it. And it’s hard.

You sit next to your practically comatose kiddo hour after hour, getting blood gas numbers, watching his ventilator, chatting with the nurses and respiratory folks, and generally watching the paint dry. Each new data point brings with it some amount of excitement or fear but as the hours and days start to drag on you lose some attachment to reality. When you are stuck in one place with your kiddo and you aren’t moving forward you can quickly get overwhelmed by the idea that you’re never going to leave. That the hospital is going to be your new home, that you need to set up shop and just get used to the stay.

Sometimes that doesn’t hit you till you’re several weeks in, sometimes it comes earlier. I remember having a talk with one of his Doctors about timelines and he walked me through when he thought extubation would happen and when he thought the next couple of steps would happen. I did the math quickly in my head and said out loud, “So Christmas” and he looked at me with a guarded look, as if to say “Don’t get your hopes up too much.” And I put my hand up and said “I know, I know, we’ll see, it all depends on him.”

Normal in recovery is moving forward in the recovery. Getting everything working like it should: breathing, peeing, drinking, eating. When one or more of those stalls out it can feel like the floor just dropped out from under your feet. Especially when your kid has done so well up until that point. It’s even worse when there needs to be medical intervention or backwards motion. When they have to intubate again, or go back into surgery, or have their chest reopened. In a lot of ways you’re practically back at step one.

It doesn’t feel good to be back at step one, but then again we weren’t all the way back at step one. We were still moving forward, we were just crawling now instead of running. Patience is a virtue and hospital time is the boot camp training for that virtue.

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