Sunday, March 21, 2010

All better!

Well, it certainly seems that we aren't totally immune from the Drama of KayTar. She was just in the hospital last month and we NARROWLY (very narrowly) escaped a repeat performance this weekend. I spent most of Friday, pacing around with a churning stomach and elevated heart rate. I knew exactly how close we were to going to the close we might be to an episode...and it took my breath away. That anxiety hasn't changed, and it likely never will. However, LIFE is different now. I used to feel like our life was NEVER normal and every time something like this happened, which was incredibly often when she was vomiting nightly from the reflux, having frequent asthma attacks, didn't have the tube and was always borderline for nutrition, couldn't go outside in the sun most days, and was having an episode every two weeks...not to mention the fact she was developmentally delayed across the board; it just reinforced how weird and stressful our life was. It felt like we never got a break. Now, we've gained so much ground, so much NORMALCY, that these setbacks don't drag us down in the same manner. Life used to be 85% abnormal and now I feel like we're functioning at a 75% normalcy rating at the very least. Maybe we're not totally normal, she takes regular medications, gets sick a little more often and gets hit harder than a normal kid, doesn't have the same gross motor skills as her peers, and has a feeding tube, among other things...but the little oddities don't totally consume our lives.

That being said, I think one of these little oddities is the rapid speed at which she decompensates from these little viruses. BubTar has NEVER landed in the hospital following any sort of illness, vomiting or not, without the benefit of a g-tube...and KayTar, geez, it seems like I blink and she's hypoglycemic and we're teetering on the razor's edge of a hospital trip for IV fluids. She vomited ONCE on Thursday, granted it was quite a bit...some of the previous night's dinner and all of the Pediasure she had ingested since...then I started Zofran and Pedialyte. There was never a major gap in fluids that should have triggered such a rapid descent. By Saturday morning her glucose was down to 53 and she was very lethargic. She woke up speaking nonsense, in fact her first words in the morning were, "Why am I on land? It is so hot...get me in the water!" She complained of dizziness, shaky legs, waves of heat...symptoms of hypoglycemia, just like last month when we went to the hospital. She was awake for about an hour, during which I gave her 4 ounces of Pedialyte, before lapsing back to deep and largely unresponsive sleep, poor thing didn't even wake up for a finger stick. Her hand barely twitched when I poked her, that was it. When she woke later, her glucose was rising a bit and I fed her 4 ounces, half Pedialyte/half Pediasure and that seemed to really help. Her behavior normalized and she was on the upswing. I continued the half/half feeds and her numbers rose and she finally peed. Her glucose was up to 85 by the late afternoon. This isn't normal, right? Do your kids tank like this with a little vomiting? We have the added benefit of Zofran and the g-tube...we can stop the vomiting (if/when the Zofran stays down, like it did this time) AND replenish fluids and yet, it isn't enough to skate through a little tummy bug. I'm not exactly sure why she bottoms out so rapidly, but I think it may be connected to the underlying mechanism that causes the neurological episodes.

Enough of that, though, she is much better now. Yesterday, she kept down 3 Pediasures delivered via the tube, and although she gave me a scare yesterday by refusing the Pediasure by mouth and saying it was "yucky", this morning she asked for a cup and has drank a bit...not enough to negate the need for tube feeding today, but enough to let us know she isn't giving up the Pediasure altogether. Good enough for me!


S said...

75% normalcy is actually pretty awesome!

Bon said...

am glad she's better for the time being.

and am VERY glad about your 75% normal. the stress of being 85% not-normal has got to be withering, one of those things that now when there's a crisis you look back and go, "how did i DO this all the time?"

xo to all.

Kyla said...

Bon: It is exactly like that. Last night I was thinking, "How did we make it through a DAY without the tube?" We dealt with all of this almost non-stop for years and I can't imagine how we did it!

ewe are here said...

I'm really glad she's feeling better and you avoided another hospitalization.

And 75% normalcy sounds pretty great!

katrynka said...

Glad to hear she is feeling better. I admire how much you have learned so that you can monitor her and try to prevent the downhill slide.

Some people/kids with neuromuscular disorders have a similar problem with vomiting. I know SMA (spinal muscular atrophy) causes similar problems to what you are describing. Not sure about others (there are about 40 some.) Might be worth researching a bit to see if they know the causal mechanism for this in SMA, perhaps it might shed some light for you?

mamatulip said...

I'm so glad she's perked up a bit. PHEW.

And hey - I love the new look!

~aj~ said...

I'm thrilled to hear that KayTar is feeling better!

moplans said...


waiting to hear your thoughts on the new healthcare leg.

metimes6 said...

75% normal definitely sounds very good!

I've suffered from bouts of hypoglycemia for many years now. It is a really frightening thing to experience; it sounds like KayTar has learned to be sensitive to the early symptoms, which is good. It starts with a very specific feeling and does escalate quickly.

Is it possible to get some type of liquid glucose that you could mix in with the Pedialyte? It sounds like the Pedialyte just doesn't have enough glucose in it to bring her back enough. If I have a bad episode, I always need a quick, large burst of glucose quickly followed by something long lasting. Of course, that's all but impossible if she's sick with a tummy bug. I've learned to carry Lifesavers with me to tide me over until I can get something else in me.

My daughter also battles with occasional episodes of hypoglycemia, and for her she will complain of dizziness and feeling sick to her stomach. It's hard to convince her to eat something when she's feeling like throwing up instead, but if I can bump her sugar level up enough, she rebounds quickly.

Anyway, just wanted to add my personal experience. It's a hard thing to have to deal with that will hopefully get a bit easier to manage the older she gets.

metimes6 said...

Oh, sorry - one more thing I just thought of. I have a brother and a sister that are Type 1 diabetics. We were all trained on how to give Glucagon (I think that's the name?!) injections should the need arise. I wonder if that may be an option for when she is either too out of it to take anything orally or too sick to have anything in her tummy.

painted maypole said...

yay for wellness!

would love to hear your take on the health care reform that passed

Julie Pippert said...

It seems to hit Kaytar harder than we experience here. And that stinks. However, 75% normalcy ROCKS. As does her recovery. I have to echo Bon about the stress, withering, and wondering But you did it with grace and it's so great it's so much better now.