Tuesday, October 04, 2011

Double Header.

KayTar is doing much better! She is still on Suprax, but she was doing well enough to attempt the day on Thursday. She made it through the day, although her glucose was a bit lower than usual (probably from the extra stress from the pneumonia). Friday was a in-service day, so she had extra time to rest/heal over the weekend. Monday was a totally normal day (right down to the daily headache)!

This zebra art car parked in front of us.

Since it has become clear that it will be months before we get the insurance issues sorted out so she can be seen at the facility that houses her mito doctor, and her soon-to-be geneticist and pulmonologist, we decided to see another pulmonologist in the meantime. Our pediatrician recommended someone (who happened to be the same doc that a friend recommended, too) so I called yesterday to get an appointment and they fit us in today, right after her already scheduled ophthalmology appointment. Perfect! It is so nice when we can take one trip out to the medical center and knock out more than one appointment...especially when we don't have to kill a chunk of time between them.

"Take a picture of how strong I am!"

First up was ophthalmology and the dreaded eye drops. Oh, how she HATES the eye drops! She did pretty well this time, though. Yes, there was screaming, but it was like 5% of her normal eye drop screaming level, so we're putting it in the wins column. Her prescription has changed some since last time, enough to justify new glasses, but not enough to be causing the daily headaches. Drat. He said it is RARELY vision that causes these recurrent headaches, but it is good to rule it out altogether. KayTar got some of those super cool post-dilation shades and we were off to our second stop.

Gloves! She was ecstatic they gave her some!

The pulmonologist seems great. He wasn't dismissive, which is what I was worried about. KayTar isn't a typical kid, even in terms of her systemic dysfunctions, so she needs doctors who can look a little beyond how normal kids function and how normal diseases progress. Those kind of doctors can be hard to come by! I told him about her weird breath-holding breathing pattern (and showed him a video) and told him about the transient desats. First, he started to say that those fingertip pulse oximeters are sometimes in accurate on little kiddos (which I agreed with) and that you really have to pay attention to things like the waveform and heart rate, too...and I politely interrupted to tell him that I had been paying attention to those factors, too, and it seems to be accurate. I had a video of it on my phone, so I showed it to him and he agreed that it seems accurate on all fronts. He doesn't think it is related to the weird breathing (so maybe that IS a tic?), but he thinks the desats are worth looking into. She had a pulmonary function test in the office today, which was good, and she is being scheduled for a sleep study in the near future. He said if it is happening when she is awake, it is probably happening as much or more while she sleeps, so hopefully that will give us some information. He's also going to look at her previous chest films to be sure nothing was missed. I think it is a solid plan and I'm glad we're looking into this a little more closely, it has been a nagging worry for months now.

When all was said and done, KayTar declared it the BEST DAY EVER (she's probably had a couple thousand best days ever by now) because she got disposable sunglasses from the ophthalmologist, and gloves and a nose clamp (from her PFT) from the pulmonologist. She's madly in love with that nose clamp because, "I can finally hold my nose without having to use my hands!" We're very lucky that she is so easy to please. :)


alejna said...

I'm so glad whenever you get to see a doctor who really wants to follow through.

(And who knew a nose clamp could be such a thrill? Now I'm wondering if I should get one. You know, just to have one.)

Jodi said...

Maybe you won't need a new doctor once this insurance CRAP gets sorted out; at least from a pulmonary stand point. As for the nose clip, if that's all the rave, I may need to look into getting myself one. Kaytar may just give new meaning to "Keeping up with the Jones'!"

Take care!

Gizabeth Shyder said...

Kids are so easy to please, aren't they? Much easier than adults.

Took the kids to Disney last week, their first trip. It was magical. Your car reminded me of the Animal Kingdom.

~aj~ said...

Well someone get me some shades and a nose clamp then! :)

Glad you saw such good doctors and that they you were able to do back-to-back appointments. Hope they're able to help you find some answers!

Shellye said...

I'm so glad that KayTar is doing so much better!!! (Now if only I could be doing so much better. Everything I catch turns into pneumonia or some other infection.) It's also good that she had that extra day to rest. I hate to hear that she's having daily headaches.

I agree with KayTar. New shades are the best, although I haven't tried the nose clamp. Not sure I would like it.

Bless her heart...I don't like those eye drops either, or the machine that puts a puff of air into your eyes.

That's great about getting into the pulmonologist so quickly. That's almost unheard of!

Hope KayTar continues to be on the mend.

Jodi said...

Is Kaytar specifically attached to a nose clip in particular or does she just like various different medical equipment? I happen to have a few extra Lopez Valves here at home. I HATE THEM for my own J-tube but when I was inpatient in August it was Hospital policy that I had to have one. Because one of the pieces would always fall off they gave me several to take home. Would she be interested in having her very own Lopez Valve? I would be happy to put one in the mail this weekend. Let me know!

InTheFastLane said...

Cool gloves!!!
And insurance is so unnecessary and yet so dumb....

leah said...

Oh my goodness - that was a BUSY day! Fighting insurance companies is almost a full-time job for parents of kids with "complex" issues. Ugh.

I love the shades with the ophthalmology appointment - Nolan's PO didn't give him any on the last trip, but it was overcast. I think I'm going to buy him a pair of cheap-o ones just in case it is sunny on our next trip (in December).