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.

Part 3

Denial is such a funny thing. Of course once we'd heard that Penny might, maybe, have Kawasaki disease, we went into google overdrive looking up all kinds of stuff. Between that and the only slightly elevated sed-rate I mentioned last time, we were actually sort of reassurred that she probably didn't have it. She didn't look as bad as the pictures of the kids on the websites we saw. The rash was almost completely faded from what it had been. Her eyes weren't bloodshot. Her blood levels should be higher.
We'd scheduled a 230 appointment with Dr. Dawson to talk about the rest of the blood results which should have been back by then. I brought Penny to campus and let her watch cartoons on my laptop while I worked on my desk computer. When we got here I checked my phone and noticed I'd missed a call from the doctor's office. The voicemail was Dr. Dawson calling to check on Penny to see how she was. I called back and left a message to say I thought she was doing much better. Her fever didn't seem as high as it had been. I really thought it was going away. The phone rang a little while later and when I saw that it was Dr. Dawson I assumed she was just calling me back. So I was a bit disoriented when she started talking about Penny's bloodwork. In my head I was like, "wait, y'all called yesterday to say that was fine, and you just called an hour ago to check on her just to see how she was doing." Through my confusion, she was explaining that Penny's CRP level was "quite elevated" (the same words the hospital folks used when they talked about her blood work). I later found out that "elevated" means 3. Her levels were 60. Dr. Dawson said that she was going to schedule Penny for an echocardiogram in Montgomery for that afternoon, but that she also had a call in to the infection specialists in Birmingham and she was waiting for them to get back to her. After we got off the phone, I called Tray to tell him. We knew if the echo had shown anything that we'd be on the way to Birmingham anyway, so we decided to be ready to be away from home for a day or two. I gathered Penny and our things and hustled her out the door. On the way home she asked to stop by and see Maw-maw. I didn't know when the echo would be scheduled for and it was only about 11 a.m. then so I figured why not. I could wait for the doctor to call there as well as I could at home. I called Tray and told him what we were doing. He was cool with it since he was getting the chickens and dogs set up for us being gone. While we were there Dr. Dawson called and said they had scheduled us an appointment for 1 p.m. in Montgomery. It was 1130! It takes an hour to get there. I was completely frazzled and concerned that they wanted us there so quickly. She said it didn't matter if we were late, they would be waiting on us. That scared me more than anything. Penny and I bolted our lunch with Maw-maw and I flew back to the house to pick up Tray. Before I got to the driveway, my phone was ringing again. It was Dr. Dawson saying they'd had more blood results back and some of her other liver values were elevated as well. She'd talked to the specialists in Birmingham and they wanted to go ahead and initiate Kawasaki treatment in the hospital and just forgo the echo in Montgomery. I actually spent several minutes on the phone with Dr. Dawson sitting in the car in my driveway. She said she could try to find us a place in Montgomery that would offer the treatment, but Children's Hospital was knowledgeable and that's where the specialists were, plus it was a children's hospital, etc. As little as I relished driving Penny all the way to Birmingham, I decided just to go there. Dr. Dawson said ok, well, I don't think you need to go by ambulance, but they will be expecting you as soon as you get there. Even though she was saying we didn't need one, even the mention of an ambulance scared me. I met Tray coming out the front door and told him that everything had changed and explained the situation. Tray had already packed for us for the most part, but we went into overdrive gathering anything we might need for several nights. Dr. Dawson called back to say we were all set up with the pre-admission at the hospital and to go ahead and head out, so we did. We stopped and bought Penny a milk shake on the way out of town to make things up to her. She did not want to be in the car, and it was nap time, which meant she wasn't going to get a nap that day.

Part 2

Continued from the last entry... Penny's doctor, Dr. Dawson, is really great. Penny pitched a holy fit when we got there and the (unduly gruff) nurse wanted to weigh her and take her temperature, etc. Then, they turned on a movie on the tv mounted on the wall in the exam room - the movie Robots - and left it on with no way to turn it off. Penny was freaked by the movie, it was too loud and I thought I'd never calm her down. I'd tried every toy in my purse, and downloaded three different apps to my phone trying to distract her by the time the doctor came. Dr. Dawson walked in, blessedly turned the movie off, and proceeded to talk with us with a calm, quiet demeanor. Penny chilled almost instantly and laughed with Dr. Dawson and willingly let her examine her. If you've ever had anything halfway significant happen to you health-wise, you know that you can kind of tell by the words the doctors use that something's up. She said she wanted to do a strep-test and then we'd talk about some things, but she didn't want to worry me until the test came back (which of course did nothing but worry me). She was really calm and cool, but it was obvious that she no more expected that strep test to be positive than to see pigs fly. Still, a nurse was sent in to swab Penny's throat. We'd never had to do that before, and it was not fun. It was a quick test (5 minutes), and negative. Then Dr. Dawson returned to talk. She explained that she thought Penny might have an inflammatory process called Kawasaki disease, but we needed to do another throat swab b/c the quick strep tests can be falsely negative and so they'd do the more accurate test that takes longer. She also wanted to draw some blood. She explained that she had a two year old daughter at home and she would not be doing these tests if they weren't necessary. Two more nurses were sent in to draw blood from her arm. It took forever and she screamed the whole time. And then, when they were finally done, they swabbed her throat again. Penny has never before had a full-on temper tantrum like I've read about. She just about had one then. She crossed the line into crazed panic. I confess that I barely heard Dr. Dawson telling me about when all the test results would be in and what to do and so forth. I was trying too hard to calm Penny down and I couldn't hardly hear over her. I left without a totally clear picture of what to expect. The phone rang that afternoon and they said that one of the tests came back and it looked good. Her sed-rate was elevated, but not crazily so like is usually seen in Kawasaki's disease. I went to bed that night thinking it probably wasn't really Kawasaki's and didn't really expect the rest of the test results to show any different. What a difference a day makes.

What Happened, Part 1

More as a way to remember this for ourselves, but also to share with those we haven't talked to in any detail. I took Penny to the gymnastics play time on Wednesday the 13th. She was super energetic and had a blast. We came home and she took a nap. When she woke up and I went to pick her up she felt hot so I took her temperature. She was running a fever. By the next morning she had a horrible all-over rash, even on her hands and face. I thought that was odd because usually with viruses the rash happens after the fever breaks. I was kind of hoping its presence meant that the illness would be short-lived. I called the nurse at Penny's pediatrician's office just to ask about it since I thought it was unusual. She said it sounded viral to her, and agreed that maybe the fever would be gone the next day since the rash was already there. I was reassured. That night she started vomiting, and threw up every hour or so all night long. Every time we'd lay down and fall asleep she'd wake up and throwup again. I called the nurse again on Friday. It was a different nurse, she said it sounded viral but I could bring her in if I wanted. I figured there was nothing they could do, and it was only day 3 of a fever so I opted not to take her. Over the weekend, her rash started to fade a lot, but her hands seemed oddly wrinkled and bumpy. They looked weird, almost gnarly. She woke up during the night Saturday night (in fact she woke up during the night almost every night that she was sick as the fever would spike and she'd need more tylenol), and asked me to clip her fingernails. Odd, but I wasn't looking a gift horse in the mouth. She almost never lets me clip her fingernails until they are almost longer than mine! When I went to clip them, I realized her hands were very swollen. Her fingers were almost like little sausages the skin was so taught. By the next morning, the swelling was gone, but they were back to that odd bumpy gnarly look. On Sunday she complained that her foot hurt and would not put shoes or socks on. Keep in mind that through out all of this, I was giving her tylenol every 4 hours for the fever that never broke. I mean, it would go up and down, but she never woke up after a night sweat with no fever. The fever was always there, high or low. The important thing is the tylenol. The cherry flavored red tylenol. I was aware that her lips and tongue were red, but I thought it was the tylenol. I never stopped to think that the dye would fade and that her mouth shouldn't still look that bright red hours later, you know? It wasn't until the doctor said something to me about it when I took her in on Monday that I realized it wasn't the tylenol making her mouth look like that! Under the fluorescent lights too I could see how incredibly dry and cracked her mouth was. She was begging me for chapstick, but I didn't have any in my purse (we have like 10,000 tubes at home, but of course I didn't have one with me). The nurses found a little sample tube of Aquaphor and we began treating her lips with that. Her tongue was red, red, red. Think the reddest popsicle or lollipop you can imagine washed down with red kool-aid. Red. And bumpy like every tastebud stood out. She'd woken up with bloodshot eyes that morning before I took her in, but they were not bloodshot at the office. Later, her eye lids would turn red like she had red eyeliner on.

That's all I have time to type now, but I'll write again about the initial doctor's visit and diagnosis.

The kindness of others

Birmingham Children's Hospital was a great place (if you have to go somewhere like that). The facilities were very nice. They have wagons to pull the child and/or your luggage in and out of the building. They have activity centers on each floor and then there is Children's Harbor on the second floor with all kinds of resources. Unfortunately, we were quarantined for most of our stay, so Penny didn't get to take much advantage. It was hard to see some of the things that they have there, like laundry facilities and two-hour use nap rooms. It just reminds you that families have to stay there for weeks and months at a time. They had books, movies, and games for "rent" out to your room (we rented the movie Cars). They had boxes of free books and games and such for kids to take and keep. Now when I see fundraisers for Children's Hospital, I am much more knowledgeable about where some of those resources go, and I encourage anyone to support them.

The other thing that has really struck me is blood donation. The IVIg treatment that Penny received was composed of the immunoglobin extracted from the blood of over 1,000 blood doners. One thousand. I feel compelled to donate blood every time I see a donation vehicle from now on.

3 Year Checkup

Penny had her regularly scheduled 3 year check up today. We combined it with her 3-5 day post-treatment check up (technically 6 days, but the other appointment was already scheduled, so hey.) Anyway, she has a pretty harsh sunburn-looking rash that's peeling, but apparently that's normal. It doesn't bother her. I keep putting lotion on it anyway.

Her stats are: 26.9 lbs (12th percentile), 36 1/2 inches tall (36th percentile). She's sleeping tons more than normal - which means probably about what other kids sleep normally. Doctor says she's just recouping. I hate the reason for it, but I have to say that a guaranteed 1.5 hour nap everyday is kinda awesome.

Kawasaki Disease

I'll try to post more details about what happened over the past week in future posts. For now, suffice to say that this is the first chance I've had to sit down behind a computer for any length of time to do something like this. Most anyone who reads this probably knows already, but Penny was diagnosed with Kawasaki disease on Tuesday and we were told to take her to Children's Hospital in Birmingham that same day to begin IVIg treatment. Follow this link for a good synopsis of symptoms. The good stuff is on the second page, so just click through. Obviously, I've been to several websites about KD, and that one is the best one that I've found. I will say that the picture of the strawberry tongue on this website is nowhere near as red and bumpy as hers was. Nonetheless, it comes closest to our actual experience. Some of the other more "chain" websites like WebMD and others that pop up first on a google search don't seem to be all that accurate, or at best are incomplete.

I'll detail our experience at the hospital another time but the IVIg treatment went reasonably well. It's a powerful treatment that causes all kinds of side effects up to and including anaphylaxis, and not many hospitals offer it. Penny tolerated it well enough. It took eight hours. We had to back off of it twice during the night, but were able to get through it by 6 a.m. It made a huge difference. Most of her symptoms were gone by mid-day Wednesday. Luckily, we caught it in time and she received the treatment within the 10 day window. Chances of having an aortic aneurism in successfully treated children is about 25%, so she had an echocardiogram which was normal (but expected to be so early). She'll have another at 2 weeks post-IVIg and another at 2 months. From the time they started the IVIg until yesterday she was on high-dose aspirin (3 adult aspirins every 4 hours). She had to be on the high-dose until she was afebrile (no fever) for 48 hours. She woke up with a fever on her birthday after one full day of the high-dose, so we had to keep it up for an extra day. You'd think they couldn't get a fever on that much aspirin, but the doctors said aspirin is more of a blood thinner than a fever reducer, and anyway, she did - so I guess they were right! Since she's been afebrile for 48 hours, we started the long term low-dose regimen, which is half an aspirin every day for eight weeks, or until her 2 month echocardiogram.

It's scary on two fronts. First, of course, the 25% risk of serious heart disease that could right now be developing. Second, the real risk of Reyes Syndrome if she's exposed to the flu, chicken pox, or takes any ibuprofen while on aspirin. I can control the ibuprofen part, the flu and chicken pox not so much. She'll have to get a flu shot as soon as it's available this season. As for the heart disease, it's wait and see. So, that's where we are right now. I'll be back again to write about our hospital experience.