Tuesday, April 20, 2010

go bye bye?

I've had so many people ask and want to know so many details. Thanks for your care and concern. We are doing alright (except for my hormonal state). Claire is...Claire. Cute as can be.

Here's the story:
Tuesday morning, Claire decided that it was necessary to wear her 'fishy' swimsuit. She loves Finding Nemo and her Aunt Marlies gave her a swimsuit with orange fish on it. So, I am helping her put on her 'on-dge (orange) bath sssssooot' when I notice a huge rash that is solid red from the top of her diaper to the base of her neck. She doesn't seem bothered about it, so I don't make a big deal of it.

Next, she says 'bubbles? bath?' So, we put her in the bath tub, in her swim suit, with bubbles.

She plays merrily and continues this adorable routine for the rest of the day. I am thinking of possible causes for this ridiculous rash. My instinct was to call my mother. She was in school, so every bit as good is to call my mother-in-law. I suspected something, but I wanted to be sure. Immediately after describing it to Krista, she said, "it sounds like Rosiola." Which was exactly what I was suspicious of. Claire had been exposed about 3 months before, and they say that symptoms take about 6 weeks to 2 months to appear. So, I just figured it was still probably it. I called Nick, he looked up the symptoms and we decided that it was probably that.

The rash grew (which it was said it would do, so no surprise). And grew...and grew....AND GREW! By Thursday, it covered her from head to toe. It was not a few bumps, it was a sheet of red with a few HUGE spots on her limbs. I noticed that she was warm, and checked her temperature: 102.1 F Okay, time to call the doctor. I didn't want to take her in needlessly, but I was concerned. I wanted to talk to the nurse (and I had called before, but had been told that they couldn't give out medical advice over the phone---dang society that has way too many issues suing others!). She said the same thing, but we decided that it might be worth it just to confirm MY diagnosis.

Doctor Stevens took one look and said: Hives. What have you changed in the last week?Absolutely nothing. She'd been around a few new dogs, we had a different scent of laundry detergent but same brand, no new foods. Nothing. Nada. I went home with advice to give her Benydril and Motrin for the fever. She was still cheerful and wonderful Claire.

Friday she became a little more clingy, ate less. My sister in law Amy watched her while I helped my mom at school in Orem. She said the same things. She slept for a LONG time for her nap.

Saturday she was super fussy. We traveled home from Orem area and Claire screamed almost the whole ride. I about died. At points, I would try and talk to her about her favorite colors, animals, sing, whatever. Other times I turned up the music to drown her out. She would scream louder. I would increase the volume, she would increase her volume...and on and on, over and over. Got her home, she wouldn't eat much and asked for water, water, water.

Sunday was worse. She was lethargic and wouldn't drink AT ALL. let alone eat. Debated over and over whether to take her to Instacare or not. Took her temperature: 102.9 F, called the on call doctor three times, she refused to even take her medicine and when forced, would barf it back up, wouldn't put pressure on her legs without screaming, took two LONG naps, rash had changed to a neon red color and was more splotchy, fussed constantly, wouldn't drink, legs so swollen they would shake. First doctor (well, nurse...I wasn't allowed to talk to the doctor directly) said she wouldn't die from hives. Bring her in tomorrow. Second doctor (well a good family friend that is really a nurse) said take her in. Instacare was closed, didn't really want to go to the ER so called the on call ped one last time: if she has had a wet diaper, you can wait until tomorrow and take her to your doc first thing. She hadn't had one, but while the doc and Nick talked, she did have one. So, we waited until Monday. I was so worried about her dehydration that anytime she woke up in the night, I would force feed her ice chips. Screamed bloody murder, but would eat them.

Monday we took her in ASAP. We really like our doctor. He's young and doesn't mind asking for second opinions from other docs. LOVE that. They conferred and decided that she needed to be tested for a few things. And she needed to be re hydrated. Nothing for sure, but we better take her to the hospital and admit her. She was exhausted, but of course had to be poked and prodded from the second we walked in. She screamed bloody murder for hours and hours. Wouldn't sleep. Blood work came back and doc decided that because her blood work was so
'concerning' that we needed to do a lumbar puncture to rule out/in spinal meningitis. I about died. From Rosiola to hives to meningitis in a week.

Nick and I held her and talked to her the whole lumbar puncture. I about died (did I already say that? cause I really did). She screamed so hard. She was so upset with the doc and nurses that now she screams whenever they come in, regardless of shift changes. She was soooooo good though. I would talk to her and ask her about cows and she would say "AHHHHHHHHHHH MOOOOOOO AHHHHHHHHHH!" or what color was this or that, "AHHHHHHHHHHHHH On dge! AHHHHHHHHHH!" or Tell me about Jesus, C. "AHHHHHHHHHHH! Gee-sahs! AHHHHHHHHHHHH!" She is amazing. I'm so blessed to be her momma.

We left her at 9pm to sleep (she does NOT sleep with people in the room with her, or when they walk in....however, she sleeps like 10.5 hours at night, so I am fine with those issues). She screamed for a 1/2 hour and slept until the noisy CNA and nurse came in to do vitals around 1am. Nick was the lucky and loving parent who stayed the night. Claire's monitors would keep going off and wake her up because the noisy CNA would barge in, turn on the lights and try and fix things. GRRRRRR! I had already described to these women how Claire needed to sleep---LET HER SLEEP, please. Then 5am rolled around and it was time for another blood draw. She was a trooper, of course. Nick held her hand and she screamed.

This morning we walked into a room with a poopy blown out diaper that she was sleeping in (how do you poop when there's nothing in you??? 3 times!?) Doctor said that her CRP (which is an inflammatory level---gauges how ill you are) is supposed to be at about 0.8. When Claire was in the NICU, it was (at it's highest) at a 3. Yesterday's blood/lumbar work put her at a 28, but the lumbar cultures are not showing signs of bacteria. So, this is not (most likely---we have to wait 48 hours to be sure) bacterial caused spinal meningitis, but something else. Viral meningitis is suspected, but so are many, many things. Her blood cultures are concerning, so are her urine cultures. I guess we'll see.

She is up and walking for about 10 steps at a time before she falls over. She wants to go home. "Go bye bye?", "home?" It kills me every time. Right now, I'm waiting in the cafeteria while she sleeps (I'm hoping). Nick is at work for a few hours. And I wish this was all over.

My kid is amazing. I don't know what I would do without her. I'm so grateful that she is mine. Even when I get impatient enough to turn up the radio to drown her out (which is terrible, ESPECIALLY because I know now that she is sensitive to light and sound). I pray for her to forget this quickly. I pray for her to be healthy. I pray for my nerves---especially because I was scared to death we had passed meningitis on to so many people! Not to mention being prego would not be a good time to have meningitis myself.

We a grateful for all those who have been thinking about us, praying for us, fasting for her. God bless you.

We'll keep you updated.


christine said...

Oh, sweetie you are in my prayers. I hope Claire recovers quickly and the doctors figure out how to help her.

I'm sending you a big, big hug.
Love ya Cousin!

Catie McGee said...

Oh Deb, I am so sorry! I can't even imagine what you are going through. Having a kid in the hospital is the worst thing. I hope she gets better soon.

Shayla said...

poor claire. :( And poor Rufie. I will pray for your little family!

Melissa said...

Oh my sweet sister. i love you and your family. You all mean so much to me. Please keep us updated and let me know if you need anything,

Marissa said...

Deb, you are in my prayers! I hope your sweet Claire gets better so fast and that you will have strength-it is so hard on the mommy too!