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.

She said

Penny cracks us up these days. She'll make her animals talk, but like she's reading a book. For example, she'll hold Mr. Bear and make him say something, but it will come out like this: "Hello, I'm Mr. Bear, he said." And then Blue Dino might say, "Hello, I'm Blue Dino, she replied." It is hysterical to listen to. The first time I noticed her doing this was back and Thanksgiving when Chris and Carrie were down. We were over at my mom's house and Carrie had taken her shoes off. Penny kept putting Carrie's shoes on and walking around in them. Carrie had left the room, and Penny took her shoes across the living room, and Chris and I witnessed Penny say, "Oh, no! Where'd my shoes go?, said Aunt Carrie." He and I laughed so hard. She doesn't talk in "book-speak" all the time, but it makes me laugh every time she does it. In general, though, the level of imagination has been ramped up to 11 now. At meal times she regales us with these tremendous run-on sentence stream of conciousness stories that make absolutely no sense. We have to be careful not to laugh too hard or she'll get embarassed and run and hide, but if we do our best to keep our faces impassive, yet interested, she'll go on and on and on about some of the craziest stuff. It is so much fun to listen to -- and kind of alarming, like, is that really what's going on in her head all the time when she isn't talking? Lol!

Progress

I think I detailed here how Penny had a meltdown the first time I tried to introduce her to playing in the sink with bubbles. I needed to wash a few things by hand today and filled the sink up with lots of bubbles and gave it another shot. I let her "wash" some of her tea set things. She liked the bubbles - or rather, she liked washing off the bubbles - but she still wouldn't put her hand down in the water to get anything. If she dropped whatever she was washing into the water beneath the bubbles, she would get upset until I would fish it out for her. But, skimming the surface of the bubbles with her toys was totally fine (as long as it was immediately rinsed off). Baby steps.

Arthur

Well, I waited a long time to post about Artie, but here it is. We have a third dog now. He's been with us for awhile, but we hemmed and hawed about trying to find him another home. I can't imagine doing that now, so I guess he's part of the family. Penny certainly thinks so. According to her, Lindy is my dog, Jake is Daddy's dog, and Artie is her dog. This is mostly accurate except that Tray might take issue with that since he's the one who usually feeds all three of them. :)

Artie's a terrier mix, but probably something close to a Welsh Terrier. Hence the name Arthur. He is also the best retriever of the lot. Go figure.