After Surgery Stress and Letdown

(I think I published this on Caring Bridge but never here)

(Originally written) FRIDAY, AUGUST 27, 2010 10:20 PM, EDT

Today was a much better day. I (Joanna) have a better perspective on David's entire medical situation, and even specifically on the pulmonology visit yesterday.

1. It is clear to us now that the docs need to be in regular communication with one another; this started yesterday with a call from the pulmonologist (I can't keep typing that word, his name is Dr. Bacot, prounounced bay-ko) to Dr. McGovern (Dr. Pulver & Tripp's partner, we like him), and we are going to make sure they're talking regularly. It's a reminder that we are the only ones talking to everyone, and we are David's advocates.

2. We will get this more or less sorted out over time. It is our job to take care of David (see below) and while there will be screw-ups along the way, we will do the best we can for him, as any parent would for any kid. We have a lot of support from friends, family, church, co-workers, etc., we have a great Early Intervention team, and we do like and trust most of the medical team (I say "most" because Dr. Bacot is new, and there's also a new GI guy coming on board, so we will have to see).

Tubes & Probes & Wiggling

FRIDAY, AUGUST 13, 2010 7:57 AM, EDT

Good morning, everyone!

Sorry I didn't post further updates yesterday, as promised. After the surgery everything was pretty scattered for the rest of the day.

We got to see Little Guy at about 1:30. He's a little scary looking, with all the tubes and wires. We figured we were ready for that, having been in the NICU for so long. But this is a different level - much more complicated. He has two IVs (one in neck, on in arm), a catheter, a chest tube that is draining fluid from his chest cavity, and some pace-making wires going to his heart. That, plus the incision, plus the respirator. He's being monitored in more ways, too - blood oxygenation is being monitored in different places (soon after the blood leaves the heart, then again as it gets to his head/brain) and he has a temperature probe on his foot, which also lets them know how circulation is going (warm foot = good).

The interplay of everything is pretty complicated, too, and I don't know that I understand everything. Some things he is currently experiencing are expected after the major trauma of surgery - irregular heartbeat, differing blood pressures, etc. The nurse said it'll take a bit of time to know what is happening as a result of the surgery, and what is the real deal (more permanent), and that makes sense.

It was difficult watching him last night - he was wiggling around a lot. The doctor swore it's not pain from the surgery he's feeling, but just ("just") agitation from being aware of the respirator. He has had more medication than usual to manage him (both morphine and some sedative/hypnotics).

And this morning when Matt called to check in, he has not made as much progress in weaning off the respirator as we had hoped. He was at 25 breaths per minute when he came down to ICU, then was reduced to 22, then to 20. They have to get him down to 10 breaths by the respirator per minute before they take the next step, which is that the respirator would only breathe for him when he doesn't do it on his own, and then he could come off it. But overnight he's back up to 22, so I guess that's our challenge for the day.

I'll write more later about yesterday, I guess, though I don't necessarily want to think about it too much. The pre-op part where we got to be with David as he was falling asleep was awful awful awful, pretty much as bad as I imagined. And after all the build-up about the stupid red line, we didn't even get to do it - the anesthesiologist (whew, sp?) just carried him away in her arms. I mean, we got the final hug/kiss, but I guess like many things in life, it wasn't as we had expected.

Misgivings & Doubts

WEDNESDAY, AUGUST 11, 2010 9:09 PM, EDT

Today (Wednesday) was definitely a mixed bag of emotions. We arrived at the hospital at 9:00 a.m. sharp for our pre-op procedures. We are impressed with the facility and staff at Emory - everyone is very friendly and super-efficient. We got asked the same questions multiple times by different levels (nurse, NP, MD) of folks, had a brief physical exam, and then labwork, a chest x-ray, and another echocardiogram. That all went quite smoothly, but we did not get to meet the surgeon because when he was available we were in echo, when we were done he was tied up with something else, etc. We'll have to wait until tomorrow morning.

One difficult part was meeting with the surgery fellow, whatever that means, about the risks of the surgery and signing consent. He went over various things that could go wrong and the percentage chance of each happening. I know this is something they do for every surgical procedure, and that even getting your tonsils taken out carries some theoretical risk. But it was still not a good conversation to have. Most notable was my mistaken belief that the survival rate for this procedure is 99%. It is actually 97% (the charts they posted online were sort of confusing to interpret, and evidently I wasn't looking at the right one). Generally I am a person who would think, "oh, 97%, that's great!" But I think Matt and I are now thinking that our baby's risk of something major going wrong has just tripled, from 1 to 3%.

Part of the pre-surgery process is giving David a bath in betadine (spelling?), that orangey-brown stuff they swab you with before they do surgery. We got a little spongy bar of soap, and had instructions to give him a regular bath first, then the betadine. This was really hard for Matt and me - we just haven't given him enough baths yet, you know? He's only been home from the hospital for a little while. This can't possibly be the last bath we give him. It can't. There have to be hundreds ahead of us. He hasn't even gotten to splash with his big brother in the tub yet. There's so much work for him and Simon to do. This can't be his last bath.