Friday, August 28, 2009

Update

So yesterday Kendall cried until about 8:00pm. She took a few cat naps in between, but all in all, she was awake screaming most of the day. She also started vomiting last night. She doesn't have a voice at all anymore.

She blew another IV (that totals 4) and it was next to impossible to find another vein. But they did.

The nurses here are truly special people. They seem to care. Really care. Our child life specialists took Kendall around in the wagon while Justin and I took a break last night for about 30 minutes. Then, I think it became more evident to all the nurses what we were dealing with. They were persistent in telling the Dr.'s so last night a very low dose of Klonnadine (sp?) was called in. I guess this is a drug used to treat high blood pressure as well as anxiety in adults, but it worked. She slept for a few hours, woke up fussy, then went back to sleep. So, baby steps towards getting her some rest. I'll take it.

The search was still on for finding a reason for her fussiness. (apparently constant screaming for 4 days and no sleep isn't normal) They wanted to test for a UTI by catheter yesterday, and I said no. I test her urine quite frequently with test strips at home, and everything looked fine. But, when we couldn't find a reason, Justin and I talked about it and I reluctantly agreed to rule it out and have the test run. Looks like everything was normal, but we're still waiting for another test result from the culture.

I requested our Ophthalmologist come take a look at her. Kids with cataracts removed are at an increased risk of Glaucoma, and I've read when Glaucoma develops there are symptoms such as increased fussiness and watery eyes...all of which she has, so I'm going with my gut on this one.

But I believe this is a sensory thing. She's just over stimulated and overly exhausted. She drank 1.5 oz this morning, and she's starting to take her passy again.

We've adjusted her Lantus again since she had low blood sugar in the middle of the night. Yesterday we only had to give her one dose of Humalog, so they are still playing with that. So, on average her Ketones are running at 6.5 or higher, and her blood sugar has fluctuated from 285 down to 60...like we said before, she's complicated!!!

On a lighter note...Justin didn't have anything to sleep in, so I offered a pair of my PJ pants...Leave it to my hubby for the comic relief. My 6 foot 5 handsome, muscles of steel, husband put on some cute pink flowered stretchy capri pj pants. They were skin tight and I laughed til my tummy hurt.

Its hard to think clearly in here. My brain feels like mush, and I can hardly tell you what day it it, or what time it is. I don't know how you moms make it through long hospital stays. I'm a mess! I can't remember what Drs or nurses I've said what to! And the florescent lights are killer. I want to be home, but only when Kendall is ready.

Looks like the nursing is being figured out too, so that puts my mind at ease a little.

Thanks for the prayers. Please keep them coming.

****************Update**************************
Kendall's results came in and her Diabetes is Type 1 Auto Immune (whatever that means...I guess that it just happens) Good thing is it is just another issue. We will not be moving forward with a muscle biopsy.

As far as I'm concerned...she had a stroke in utero caused by the Factor V affecting the formation of her eyes resulting in cataracts leaving cysts in her brain which caused Infantile Spasms, which have nothing to do with the other issue uncovered this week...Diabetes...

Justin says we need to get a bumper sitcker for her wheelchair that says "Shit Happens" I thought that was tacky at first, now I think I'll go get one!!!

5 comments:

Heather said...

Like the bumper sticker idea.Could you send one our way??Hope and praying today is a better day for your sweet girl and that you all find your way home soon.

Val said...

What is it with the Briggs boys wearing our clothes? This has also happened to me, more often he has to 'borrow' my socks- he has 2 dresser drawers AND 1 sports duffel bag FULL of socks. and you know his feet are grossly twice the size of mine. I do however know how cute my Briggs is in girlie pants- tee hee hee! That's hilarious about the bumper sticker- keep finding the humor to keep it light!

Jah bless

Lorrie said...

Love the bumper sticker idea. Glad you got some laugh therapy last night - funny how that seems to help things sometimes.
How is Kamden adjusting to the first week of school? Would he be up for an ice cream date with us sometime? Let me know and we can organize something to take him out for a treat one day.
Give me a call if there is anything I can do. Sending prayers your way....

xoxo,
Us

therextras said...

ditto Heather's comment. You could look to her for knowing what long hospitalizations feel like.

Praying for Kendall and family (some prayers answered already).

Barbara

Cjengo said...

I like the bumper sticker too. I feel like I went to medical school when they ask Jude's official diagnosis. "A bilateral stroke that was focused in the chorid plexus that caused a neuronal migrational disorder, that caused bilateral schizencephaly......." a mouth full. I thought about that when I read her full disagnosis. Don't you feel we could be nurses? Hang in there and the pink pj pants are hilarious. I hope you are not to uncomfortable on that horrid couch bed, and surviving the clown puke floor. ha!