When we first took Nova in, they warned us that recovery was a roller coaster, that there'd be good days and not-so-good days, and probably some downright bad days. They warn you so you can prepare yourself for the ride, so it's not a surprise when you hit a rough spot. Unfortunately, you can't really be prepared because it could be one of any number of things that qualifies it as a bad day.
Today was a not-so-good day, and was pretty much a complete roller coaster unto itself. Thankfully we ended it on a good note, but for most of the day we were pretty worried. We saw him the first time at noon - all his numbers and official "stuff" looked pretty good, normal for where he should have been, but my guts told me that something wasn't quite right. I tried to convince myself it was just that I was still upset about the formula thing or whatever but my gut said there was a problem. By the time we went up at 2, he was surrounded by respiratory therapists, doctors, nurses. He was cold and blue, they had sedated him more, and she was giving him a paralytic again. Seems he wasn't breathing right - well, he was getting oxygen in, but not getting the CO2 out. He was making gurgling noises and occasionally bubbling out his nose. They said he had "a leak" which means that the air getting pumped in wasn't all being returned through the tube, some of the air, on expiration, was coming out around the tube. This happens when they use the wrong size tube, or if the baby is trying to breathe "above" the vent, or if the lungs have gotten "stiff" because of fluid build up in the chest cavity. They paralyzed him to make sure it wasn't him doing it - it wasn't. They were "bagging" him (y'all watch ER right? they were breathing for him with the blue bag they pump by hand) to see if the lungs were stiff, which they didn't feel stiff according to the doctor. So maybe it was the wrong size tube, only, when bagging him, there wasn't so much "leak." In the end, it ended up being a mechanical problem with the ventilator machine. Not great news to hear that the machine was broken or inferior or whatever, but better than it being a lung/breathing problem. Unfortunately, now he's completely sedated, paralyzed, and having to make up all the ground he lost during the time that the vent was messed up. On top of that, he wasn't peeing right, so they were again concerned about his kidney function, and also running tests to rule out an infection.
OK, unless you've been there, you have NO idea how scary it is to see them bagging your child. And try as they might, the medical folks just can't poker-face their way through a situation like that, and seeing a doctor look THAT concerned is indescribable. I have to admit though, part of me, now, is glad that they looked concerned, because otherwise you're left standing there, scared shitless, and feeling like you don't know/understand enough. As in, "why am I terrified and they're all being so damned nonchalant!?" It was good to know I wasn't over-reacting for no reason, if that makes any sense at all.
At the end of it all though, I thought to myself, "I KNEW something was wrong, I felt it before there were any outward signs damn it!"
So, there's no infection, and by the time we left at 8:30 he was still out like a light but not paralyzed and starting to pink up and get warmer again. They had resolved the kidney/pee issue, the CO2 issue and were talking about trying to wean his vent down some. So we ended the night in a good place, but what.a.day.
Oh, they also said the Portagen formula will be temporary, maybe as short a time as a few weeks, so I'm going to keep pumping in case he goes back to breast milk pretty quick. I won't do it for months, but for a couple of weeks, I can old out that long. Of course, it was the nurse that said that, and when we talked to doctors, formula just wasn't what I was thinking about at the time, so I have to ask Dr. Watts about it tomorrow and be sure that she's on the same page as he is, but for now, let the pumping continue! (Here's to hoping that isn't just my wishful thinking.)
I also talked to the nurses today about what we went through today, and the explanation we got was that it's just mostly because he passed so many milestones at once that we "over did it." I mean, he came off several meds, weaned down to the minimum on others, came off the lasix, and had his chest closed all in under 48 hours. He had worked so hard and improved so much, and they took the same steps they would with any child, but because his improvement was so sudden on Saturday/Sunday, rather than over a period of 4 or 5 days, he had gone through too many changes all at once. In other words, he was tired, he needed a rest.
I'm too exhausted to fight with my computer tonight to upload pictures from today, so I'll just tell you, for now anyway... I have 4 or 5 pictures of a 2 1/2 month old baby covered in wires tubes and bandages, sort of just laying there, with slits for eyes. A lot like yesterday ;)
I'll upload in the morning