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Tuesday, May 29, 2012

Well, I've Never Spent Memorial Day Weekend Like THIS Before

Squirt is giving me grey hair.  I mean, she is really, truly giving me grey! hair!, y'all.
Last week felt like an exceptionally busy week for us... you know, because of the whole end-of-school-year craziness, but also because I met with two specialists to talk about Squirt's medical challenges.  On Tuesday I met with a nutritionist who has extensive experience with Celiac.  She told me we were doing great in terms of creating a gluten-free environment for Squirt, and gave additional suggestions (especially local hints) that I found oh-so-helpful.  For starters, I learned about a local bread company that will create completely gluten-free bread if you call ahead to order it.

(After my first attempt at baking a gluten-free loaf last week, all I can say to that information is "thank the good Lord.")

(Hopefully I'll get better at this whole gluten-free baking thing.)

Squirt didn't go with me on Tuesday; instead she stayed with a neighbor.  Which was wonderful and all, except the neighbor gave Squirt a fruit smoothie she made in addition to the gluten-free snack I provided.  Something in the fruit smoothie triggered a bit of a reaction, and the hours between Tuesday afternoon and late Wednesday morning were... not fun.

I'll leave it at that.

I mean, in case y'all are eating or something.

On Thursday, Squirt and I went to Bible study in the morning, as always, but in the afternoon we rushed out the door after nap to meet with a new specialist.  We got connected with a local pediatric GI (that's medical speak for gastroenterologist, y'all).  I expected to do the whole meet-and-greet, initial examination and preliminary order for various lab work.  What I got instead was a two-and-a-half hour doctor's appointment, and an endoscopy plus extensive blood panel scheduled for less than 24 hours later.

My head?  Was totally spinning.

The husband took off of work on Friday so that he could come with us to the hospital.  An endoscopy is really not a huge deal.  Although they perform it in the out-patient surgery wing, it's really more of a medical "procedure" than an actual surgery.  The doctor biopsied small portions of Squirt's small intestine (in ten places) and checked out her esophagus and stomach.  The surgical team also drew a ton of blood (yet again) to use for a couple of genetic tests and to check various hormone and enzymes levels.

Again, it sounds worse than it is.

Not to say it's completely easy or anything.  For one thing, they used a general anesthesia on Squirt because of her age.  Which means they had to intubate her.  You know, stick TUBES DOWN HER THROAT.  Obviously I wasn't too thrilled with that, but that's really the only way to keep little ones still on the table.  I paced during the entire 40 minutes.  If she ever faces an hours-long surgery, I expect to lose a couple of pounds.  In fact, I'll probably feel a tad ticked off if I don't.

For another thing, any procedure like this requires fasting.  And since the doctor squeezed her into his schedule at the last minute, she was the second rather than the first patient of the day.  And the first procedure?  Ran long.  Like, nearly three hours long.  Which means that Squirt didn't have anything to eat for breakfast... morning snack... or lunch.  AND she didn't get her nap.  Well, unless you count the general anesthesia as a nap.  Which I don't.  So y'all can just guess what kind of morning we had, hanging out in pre-op for over four hours with a tired, thirsty and hungry toddler.

Coming out of the general anesthesia... well, it was pretty horrific.  Squirt did not have an easy time of it, which means neither did the husband nor I.  It felt quite stressful, and awful, and every other negative word you can think of.  I won't share more because Squirt deserves some privacy.  I don't regret giving our consent for this - it needed to be done - but I also hope we never have to do it again.

We spent a low-key Saturday at my absolute! favorite! place! because the doctor wanted Squirt to spend a significant amount of time walking in a relatively comfortable environment.  It was pretty hot and muggy in our local area, so that left the mall.  (Oh, how I loathe the mall, y'all.)  But it actually worked out great for us to spend a couple of hours following Squirt as she toddled around, looking into shop windows.  Plus, I got a latte.

And really, everything looks better with a latte.

Sunday was church, then home for lunch and nap before heading to Canuck K's house for a Memorial Day barbeque.  And it's a good thing we did our celebrating on Sunday.  Because on Monday?  On Monday Squirt had another seizure.  It was just a small one, but she stopped breathing briefly.  And it occurred less than three days after the endoscopy.  On a holiday, when all of the doctors' offices are closed.  So guess how we spent most of Monday?

Yep, in the ER.

Squirt didn't get admitted to the hospital, which was great. (I'm beginning to venture into the world of true special needs parenting, where one judges the level of emergency not by whether one travels to the ER, but by whether or not one's child actually gets admitted to the hospital.)  We arrived home just after one o'clock.  Squirt ate a light snack for lunch, then fell asleep for over four hours.  She's fine now.  I think.

But the seizure opens up a whole can of worms.  Because her glucose levels were fine.  And she wasn't sick.  And she was acting perfectly normal up until the seizure occurred.  It wasn't provoked.  And she's gluten-free.  Which means now I don't know what the heck is going on.

And so it begins again...

23 comments:

kristen [rage against the minivan] said...

Oh, my. I'm so sorry. I hope you guys get some answers. And a reprieve!

Half Gaelic, Half Garlic! said...

Oh my, that sounds like a bad weekend all the way around. I'm do sorry to hear she had another seizure. And now you are back to square one?? Thinking of you and Squirt. Please keep us posted on her progress!

Xo,

Lisa

Dana said...

Oh, I'm so sorry. This may be a weird thing to say, but I'm so glad you can blog about it. I hope there's something theraputic about putting crafting it into a story and even with the seriousness of the situation, finding bits of humor here and there. Hang in there.

Casa Bicicleta said...

I have tears. Tears of frustrations. My niece suffers from intermittent seizures and I have an inkling of the testing and the fears and the frustrations.

TM, all I can do is send you a supportive hug and hopes for a quick answer with as little testing necessary as possible.

Casa Bicicleta said...

Look, I am so worried for you I didn't even make sense. Sorry about that......

LucisMomma said...

TM, you and Squirt (and the rest of the family) are in my prayers for quick, not-scary answers to the tests done Friday and the seizures.

Tricia said...

All I can say is I am so sorry... and I'm praying for you all. A friend laughed the other day when I was talking about a trip to the ER for one of the girls and I said we got our favorite ER doctor. She couldn't wrap her head around being at the ER often enough to establish which doctors are good and which are not.

Desiree' said...

Hang in there....we go day by day here. Praying for you all~

Briana's Mom said...

I am speechless. I hope you all are going to be able to figure this out soon. Saying prayers.

Jessica Rudder said...

I'm so sorry.

Is it possible that it was triggered by the general anesthetic?

I was sick for a week after I had general anesthesia and I was 18.

I can only imagine how tough it might be on the system of a toddler with multiple sensitivities.

Stefanie said...

Oh goodness, TM... really? I am so sorry to hear it, can't imagine how this is rocking your world.
Praying for your little Squirt!!
oxoxo!

Mahmee said...

The anesthesia does sound suspect, not that I know what I'm talking about. I really hope you find out what is going on soon. I can imagine the frustration and the anxiety that's wrapped up with it all. My thoughts are with you.
M.

The Gang's Momma! said...

Wow. I'm so so sorry. It sounds crazy, hectic, chaotic and frustrating. I'm so sorry and will lift you all in prayer for healing, for wisdom, and for answers. Hugs to you.

M3 said...

Man!!! Sending huge hugs and fervent wishes that they can figure something out SOON. I am so so sorry.

Molly said...

oh CRAP. Literally and figuratively. I wish I could wave a magic wand and make all the medical shenanigans go away, but I can't so I'll just send HUGS

prechrswife said...

Oh, no! That sounds like a weekend that would cause gray hair for sure. Praying that you will get some answers.

Shari said...

I agree, could it have been the anesthetic and/or did they give her fluids during the procedure? If so, what did the fluids have in them???

Praying all the testing provides some answers.

Beyond Normal Mom said...

Anathesia or no, she had a very stressful and out of routine few days, which could have been enough to trigger a seizure. You know how you always got a terrible cold right after finals when your body let down after all the stress.... Jut me? So many things to consider, but I hope you find your answers.

Mel said...

Bless your hearts. Hang in there. Sending prayers your way.

autumnesf said...

Nnooooooooooooo!!!!!

the meaklims said...

Wow, poor sweet Squirt. :(
Praying for ya'll.

Jill

planetnomad said...

OH my. Praying for you all. And the same thought crossed my mind as Beyond Normal Mom...could it have been stress related? Keeping in mind that I am not at all medical...

3 Peanuts said...

I am SO SO sorry TM. I am just catching up on Squirt and I feel for you SO much. We have been down this road before. Harry has had two endoscopies and load of stomach biopsies, the pill cam, colonoscopies etc. Will and Kate have both had seizures. none of this is fun. All of it is stressful and emotionally exhausting. PLEASE let me now if there is any way i can help you. E-mail me. I'll give you my number and we can talk. I am praying too.

Kim