Well, that sucks...

Doc guest post, and kind of a long one...

We will have pictures and description of our trip to the aquarium as a family last Saturday when we get a chance, but we are a bit tied up now.

We drove up to St. Louis Sunday. Honestly, it was not a bad drive, just a little bit of rain. Diaper changes were uneventful and our wolf-cub just sat back and enjoyed the vibrations of the car. He was SUPER unhappy when we got to Haven House, but this is not unusual for any kid after being in the car 8 hours. Evelyn does the same thing. But when your kid is as sick as ours, you contact the Cardiology fellow after 3 hours of unhappiness. Of course, as soon as I paged the fellow, Rowan decided that he was going to be calm, cool, and collected. And that the pacifier was something he really liked. He finally figured out the pacifier! Which is great, because he was a little fussy overnight Sunday night, but easily consoled. So not a bad night, really.

Monday morning, he was still a bit fussy and we went ahead to the hospital because we didn't know the time for his pre-cath ECHO/EKG appointment. The front desk told us it was at 11 AM and it was like Rowan said "Mom, Dad, I don't think I can make it that long" and started acting funny. So we took him in to the ER just to make sure. Literally, as the ER doc walked up to see him in the triage area, he decided it was time to look really terrible. He was sweating (not unusual for him, but keep reading) and was not easy to wake up. His hands and feet got really cold and looked blue. He started breathing really fast, even for him. Then when they took his temperature it was 40 C (104 Fahrenheit). All of this = he is super sick. The Cardiology fellow on just happened to be one that followed him the majority of his last visit and that we had a couple of longer conversations with. Needless to say, it was a huge weight off our shoulders to not have to go through everything and skip to "So how were things at home?". It also meant that he got up to the CICU really fast.

You never think you will be happy to be in the CICU again. But knowing the doctors really know him (literally) inside and out is a major comfort. The docs thought at first that Rowan could do without getting intubated (tube put in for the ventilator), but that did not last long. He just continued to look crummy with his respirations and the VBG (shows levels of different gases in the blood, assesses how well you breathe) showed that he was not doing well. So he got intubated and got a central line (IV that goes in almost to the heart) and an arterial line (this gives a constant reading of blood pressure for monitoring). In typical Rowan fashion, his arterial line caused problems and had to be taken out. When we left last night (Monday night), they were waiting on an instrument to help with putting an arterial line in a different place. His vital signs and labs improved slowly throughout the day and we went back to Haven House for the night.

Last night, we got a voicemail in the middle of the night (freaky, but it was okay). His Foley catheter (to drain his bladder, placed because they need to know exactly how much he is peeing) had been showing any urine output (which is concerning), but was repositioned and he started urinating very well. The thought is that the catheter was not in quite the right place. Urology is going to come look at him because there may have been some damage to his urethra (this happens sometimes and generally causes no long-term issues). He is now peeing like he should even without having had his diuretics (water pill) for a while, which is great.

This morning, his vitals and labs all look better, if not drastically better. His heart rate is down to "I am calm and okay" levels, his hands and feet are cool, but not ice cold like they were yesterday. His blood pressure is great without any pressors (he was on these to keep his blood pressure from dropping). His temperature has slowly recovered to high normal. They were able to get an arterial line in his left arm. He is starting to need less ventilator support. All good things.

The plan moving forward is primarily to get him stable and back to his baseline. Then we will do his cardiac catheterization. If he is ready for his surgery, then he will be put on the schedule and get the next stage of his repair. If he's not, then we figure out where to go from there. They would want to keep an eye on his pressures to see if he could maybe outgrow them being too high. How likely that is will be a discussion we will have with the team and with the surgeon.

Even if everything goes horribly wrong, we are so happy for getting our month at home with our little wolf-cub. We realized that yesterday when he declined so rapidly that we have been completely right to be on edge for the last month. When he gets sick, he drops hard and fast. And if it happens that he doesn't recover, this time, or the next, or the one after, we were able to have him home, see our puppy, lie on the living room floor and hang out with us, see Evelyn dance and twirl around him, meet all our Tulsa friends, hang out on the back porch with Dad, take a walk around the neighborhood, and see all the fishes with little sister (even though he slept pretty much the whole time). We treated him like a normal kid. Just a normal kid who gets his food through a tube, medicines every four hours, CPT twice a day, labs twice a week, physical therapy, occupational therapy, speech therapy, and a shot twice a day.

Just a normal kid with an abnormal way of doing things.