Finale

Thanks for bearing with me if you've been reading these last entries. It's been very cathartic for me to write it all out and let it go. I could probably go on and on for several more entries, but having gotten this far, it feels like time to stop talking about it. It also may be that the actual hospital experience is the hardest thing to write about, so that's making me not want to.


The whole trip up to Birmingham, I kept the denial thing up in my head. I was like, well her fever's gone down, the rash is almost gone, surely they'll examine her and decide that she doesn't really have Kawasaki disease and we'll treat her for something else. I really thought we were going to Birmingham for her to be examined by a specialist and then he or she would decide whether or not to admit Penny to the hospital. But, nope. We got there, and were admitted without being seen by anyone. The whole time I was filling out the insurance paperwork and stuff I was thinking that it was a mistake. (And no-nap Penny was restless and fussy as all get out and more than ready to go home - as she kept proclaiming loudly.)


After she was admitted, the first nurse did all the usual temperature, blood pressure, weight, etc. stuff (through Penny's loud protests) and then launched into an exhaustively detailed description of the hospital and all it's resources like where the laundry facilities were and so on. It made it seem like we were going to be there for weeks when I wasn't even sure if we were really supposed to be there for one night! We got our room, went exploring to one of the activity centers, got called back to our room, and saw the first of many, many, many doctors. Seriously, they kept coming at all hours and always seemed to ask the same questions. I did finally ask someone if they were sure it was Kawasaki's disease and they said there's no test for it, but they were 90% sure.


Penny got an IV put in about 7 pm I guess. That was an experience. It was so sad, and they weren't really laughing per se, but the nurses were cracking up at Penny because she would just lay into them and tell them off. Our verbal little girl was not just screaming nononononoooo like I heard some other kids on the hall. No. She was screaming at them at the top of her lungs, "I want you to go away and leave me alone! I am done being here and I am going home!" The nurses would trot out their little trite sayings, "You're going to have lots of fun here. We have all kinds of toys and games." She'd go, "I have that stuff at home. I can have fun there. I'm ready to leave now." As sad as it was, it was kind of funny, because she had a well thought-out rebuttal for everything they said to try and calm her down. The problem with Kawasaki disease though is that their hands are swollen so it is difficult to get an IV in. They had to stick her twice, trying the left hand first and then having to go with the right hand. I was angry at the nurse at first (without saying anything to her face), but then she told me that sometimes the swelling is so bad with Kawasaki cases that they have to try over and over again, so then I was glad it only took two tries. Once they got it in, we had to draw blood out of it which took another few minutes. I was glad when it was over.

The thing that made everything so much harder for me was trying to explain what was happening to Penny. I just couldn't seem to find the words. I'd could tell her that this or that was to help her feel better, but of course she'd just say that she felt fine and didn't want whatever it was. I felt so powerless to shield her - from the pain, but also to shield her from the confusion and chaos that I know she felt.



The thing about IVIg is that it has to be mixed for the individual and it takes a long time to mix up the extracted immunoglobin from 1,000 people, so it was 9:30 before they started the drip. By this time they had quarantined us so we were on our second viewing of Cars. They had to give Penny tylenol and benadryl 30 minutes before the drip to lessen the chance of an allergic reaction to it. She's never taken benadryl before so we were all hopeful it would knock her out. Yeah. Not so much. The pulse-ox machine crapped out and beeped every time she moved until they finally came and replaced it. Around 2 am the IV line stopped working and the nurse tried everything she could to get it working again before replacing everything. She worked on it for over an hour coming and going all the while. Even before all that, the nurses and doctors were coming and going. They start the IVIg drip very slowly to watch for allergic reaction and the nurse has to stay physically right next to her for 15 minutes to watch. After that, they upped the dose. When they upped it, her hands and feet began to swell a whole lot. When they came in to up it again thirty minutes later, I mentioned it to the nurse. So then a doctor had to come and they lowered it (but since they'd just upped it again, they really only lowered it back to the second level). Some time later they came in to up it again, and she started retching. I told the nurse and she lowered it again, but then came back and said the doctors said nausea was not a reason to back off of it and to up it again. So they did. And she retched some more. The nurse said she'd call the doctor to come talk to us. I told her that wouldn't be necessary and to please let us sleep.

Add to all of that, a nurse was required to come and take her vitals every hour on the hour. At one point during all this (around 3 am) we had a graham cracker picnic on the bed all three of us. None of us went to sleep at all until 4 am. And she hadn't napped the day before. And the coup de gras? We fell asleep at 4 am. At 430, a lab tech came in to draw Penny's blood. You want to see a mama bear in action? I almost physically chased that woman from the room. The IVIg was finished at 6 am, at which point the nurse came in and asked pointedly when was I going to let them draw blood? I knew I needed to let them, so I woke Penny up. I thought it would be easy since they could draw blood out of the IV like they'd done the night before. Nope. They'd just get back what they put in, so they had to draw blood out of her other hand. She was super happy about that after 1 and a half hours of sleep, let me tell you.



The morning didn't get much better. More doctors coming and going. Penny and I went to the bathroom and came out to find 5 doctors crammed into our little room. She started crying seeing them all especially since she didn't expect them since they hadn't been there when we went into the bathroom. Everyone was wearing masks and gowns too b/c of the quarantine. I know it was scary for her.


The cardiologists came mid-morning and even though an echocardiogram is no big deal really, she was done, and didn't like it. Right on their heels (literally, she didn't even get a chance to sit up) came the virus people to take swabs of both of her nostrils. And then the nurse came to start the aspirin treatment. Yeah. That went well. We couldn't get much in her. She finally fell asleep around 11. And slept and slept. But they made us wake her up to give her aspirin around 2 b/c she needed another dose and she had not really taken much of the earlier one. I knew that it was super important that she get the aspirin, but I so did not want to wake her up. We actually had a hard time waking her up, which is unusual - though not under the circumstances!


We heard back from the blood work, and her CRP levels had come way down, but the sed-rate (which had been only slightly elevated in Troy) was now so high it was off the charts. It was over 140 and higher than the test could measure. He said it would fall after the treatment. Everything else looked really good though, all her symptoms were gone. She had no fever. They discharged us at 5 p.m. On a Wednesday. In Birmingham. We went to Children's Harbor to wait out the traffic on the interstate and they were having a July birthdays party. Her birthday was the next day, so she got a little crown to wear and cake and icecream and won a little stuffed puppy dog. We were there with other kids some of whom had been in the hospital for weeks and months, and we felt so lucky to have only been there one night - however craptacular that night had been. We headed out at 7 pm thinking she'd sleep the whole way home. Nope. Still wide awake after all that by the time we got home. I'm telling you, the kid is a machine. One nice thing though: We got home and there were balloons for Penny tied to the front door left by our neighbors. It was such a nice surprise. Almost made up for having to give her another three aspirin pills before bed. Almost.


We woke up the next morning, on her birthday, to a fever and more (aspirin-colored) vomiting. Awesome start to the day, but things got better. We had a small party with my mom and grandmother and she tore into her presents, playing with each of them before moving on to the next.


Since that time, she got a new rash all over her back and sides that looked almost like a sunburn and it peeled. A few days ago the palms of her hands and bottoms of her feet started peeling in classic Kawasaki fashion. They still look awful, and holding her hand is like holding sandpaper. But all in all, we're glad to be home and glad things have quieted down. I love my little sweet potato and I am so sorry she had to go through all this. I am holding out hope that the echocardiogram on Tuesday will be clear and maybe I can let go of a little of the breath I've been holding for the last few weeks.