Friday, July 17, 2009

Adventures of KayTar: Episode #38

Thursday morning, shortly after waking, KayTar said, "I feel sick." which wasn't all that surprising as she is still sick, but then she said, "Take me back to bed." which was surprising because she never requests that, and as I carried her to bed she said the dreaded words, "Because I feel spinny. My eyes are sick." It was 9:15 on a Thursday morning, so I decided this was the time to take her in. After calling to notify our pediatrician, I took a bit of time to get ready and pack a few things for the hospital, assuming we would be there for the day. I scooped up KayTar and we dropped BubTar off with my parents and headed to the hospital. I called the neurologist on the way so he could send orders to the ER for us.

We arrived, I dropped the car at valet, and started to register KayTar. Then she woke up and said, "I think I feel better." No joke. The SINGLE time we expected and wanted the episode to run its looooong drawn out course, it shortchanges us. I'd like to see odds on this one. Regardless, we were there and the orders were there, so the nurses got us to a room lickety-split (after a bit of "Oh, did you miss us since last night?" teasing, since I volunteer there on Wednesday nights). In triage, I mentioned that she has been sick and her intake was down, so they might as well give her fluids while we were there. She had an IV placed, some labs drawn, and it was time to get her EEG done. They moved quickly for us and we were well taken care of. After the EEG, we found out that once again she was hypoglycemic and needed dextrose. They kept us for a while before informing me that they wanted to observe her overnight due to the poor glucose level. At some point in all that, they cathed her to get some urine, which was AWFUL. She's never had to go through that before and it would be fine with me if she never has to do that again. It was extremely unpleasant, worse than the IV and finger sticks put together. Overall, though, the hospital stay wasn't too terrible. I knew most of the nurses and the doctor who followed us in observation today from my time volunteering. KayTar and I played lots of games and watched The Little Mermaid and Beauty and the Beast. She, of course, charmed everyone we met. Even when she feels badly, her little personality is still firmly intact.

It was a long day and night, but she was released this afternoon after a successful tube feed and nice looking labs. The neurologist called me this afternoon to let me know that the EEG was normal, but he expressed interest in that fact her glucose was once again low in conjunction with an episode. He is recommending periodic glucose testing, during healthy, sick, and episodic times to follow it a bit further. He also said she might need a referral to endocrinology. Pretty soon they are going to run out of new specialties to refer her to! I also spoke with him about the light sensitivity and he gave me the contact information for a local ophthalmologist he has worked with who is having some success treated Gulf War veterans that experience similar light sensitivity (though for different reasons, clearly) with therapies and special lenses, so we'll definitely follow up on that.

Otherwise, KayTar is still under the weather, her lungs were a bit wheezy when she was checked out today, so we are continuing her Albuterol/Benadryl schedule and we may need to follow up with the pediatrician on Monday if it is still hanging on, though I'll let the pediatrician make that call. I don't know if we will take her in for the next episode or not, that remains to be decided, too. Whatever the case, for tonight we are definitely glad to be home.

13 comments:

motherbumper said...

Well I'm glad you are home too but WHAT ARE THE ODDS?!? Seriously, it's like her episode knew you were all prepped and ready to record. *shaking fist at the episode*

(though I just wish episodes would just go away forever)

Niksmom said...

Oof. So sorry you even have to go through it. ANY of it. Hope your little sweetie feels better soon and the docs can get some darned answers!

Julie said...

Gosh...it just seems like they are grasping at straws. Hugs to Kaytar.

Kyla said...

Well, it IS something we've thought of before. I think everyone suspects there is a nutritional component to the episodes, whether it is directly related to blood glucose or some other metabolic process her body doesn't do quite right. At least checking it periodically will help us rule it in or out as a related component. It is a small thing, but it is something at least. A new lead.

Hetha said...

It seems like you're getting there Kyla, slowly but surely they just might unlock the mysteries of Kaytar. Having insurance now is such a God send for you guys, it gives you the chance to explore the possibilities and get closer with each step. I take E to a metabolic clinic to see a dietician and he's noticeably improved since we began going there. Too bad our insurance doesn't cover it!

Janet said...

She's so very charming through the computer screen. I can only imagine how powerful she is in person.

I'm glad you're home.

painted maypole said...

kyla, i don't know how you do it.

NotSoSage said...

Shortest episode on record. Of course.

I'm glad she's feeling better, though, despite the loss of potential for some answers.

sheree said...

definitely praying for answers for you guys!

InTheFastLane said...

It does sound like a new lead, even if it didn't work out quite the way you thought. Hope she is feeling better.

natalie said...

I've got my own opinions on being cathed, which I will choose not to share right now because they are not nice. BUT, that is the one and only reason I put off M's VCUG test until her pediatrician would find a urologist who would agree to sedate her to have it done. Okay, I can't keep this opinion to myself: I will never, ever, ever let M be cathed again without sedation. NOTHING is worth that for my girl. NOTHING.

I'm glad you guys are home!!!!

Anonymous said...

I have read you for a while and I have to tell you that you are awesome! You are an awesome wife, awesome mom and just an awesome person....I wish more people were like you....I don't know what else to say....you are awesome and your family is so lucky!

~aj~ said...

I don't know how I missed the fact that you posted last Friday.

The odds of her episode ending so quickly are just insane and I know it must cause mixed emotions...relief and frustration at the same time.

Hope you guys had a great weekend!