Saturday, August 20, 2011

Doing Better!

Yesterday was rough, at least at the start. In spite of me getting up at 2am to re-dose her with Zofran and again at 3am to give her fluids...she woke up with a glucose of 55. That is NOT what we want to see! Her glucose was very sluggish to respond, but she was tolerating clears by g-tube, so we kept at it and it started to come up. She needed Zofran through the day, but in the afternoon we were able to get her back on formula rather than just clears. In the evening, we trialed her off of Zofran. It started well, but about an hour and a half after her dose would have been due, she started complaining of a "hurricane in [her] belly", so we gave her a dose and went back to clears for a bit. She only urinated once yesterday, but we got in 30 ounces of by bedtime, things were looking up. This morning she woke up with a glucose of 84, MUCH better! She's off Zofran and back to normal (well, her new level of normal) feeds. Yay! Oh, and I was pleasantly surprised to get an email last night from someone in her mito doc's office to check on how things went with the MRI. I'm sure she wasn't expecting anything to be amiss and got more of an answer than she was expecting, but it was nice for her to think of KayTar, especially when she wasn't even in the office! Note to self: If I can't be the kind of doctor who has gobs of time to communicate with all my patients personally, at least be the kind of doctor who has a super awesome staff. It makes a HUGE difference in how cared for a patient/family feels.

I'm still not sure what happened. She's been under anesthesia many times prior to this test and she has never reacted this way. Our pediatrician is going to request the list of medications and fluids that she was given, so we can figure it out. The only thing I know she was given was lactated ringer, which is contraindicated in mito/metabolic disease patients due to the risk of metabolic/lactic acidosis. She isn't diagnosed with anything specific, soooo I didn't speak up when I saw them hook her up...maybe I should have. Hindsight and all of that. It may not be related to that at all, though. Hopefully we can determine what the cause was an avoid this in the future. The other issue is that she has been in a bit of a decline right now anyway, so perhaps that fasting was just too much for her at this time. Not knowing what exactly happened makes me a wee bit nervous about the fasting for her gastric emptying scan on the 29th!

I'm also a little nervous about school starting this week (has summer flown by or what?!). Classes start for Josh and I on Monday (Calculus, agh!) and the kids start on Tuesday. First and fourth grades! My BubTar is in his last year of elementary. How does this happen?! I know KayTar will be in great hands at school; I met with the nurse, new librarian, her teacher and intern (a male intern, and KayTar's first question about him was "Is he HOT?" He is young and handsome, so I told her yes, but followed it with "No flirting with teachers!" and she said, "Well, I can flirt in my mind." Oh Lordy.) , on Wednesday to go over the plan...which is less of a plan and more of playing it by ear. She will be trying to wear her pump backpack all day now, because of her frequent feeds and I have no idea how it will go. I hope she transitions back to school well, but if we do hit any bumps that need to be ironed out, I know that she has a very capable team to help figure it all out.

Can you believe this tiny little thing has grown up into a big first grader?!
She was about 3.5 here.

She saw me looking through these old photos and said,
"Oh my gosh! That's my first jumper! And my first hearing aid! You took pictures?"
LOL. Of course I did, kiddo!


slouchy said...

I'm glad she's doing well!

And mine are starting 5th and 8th, so I KNOW. :)

leah said...

Oh my goodness, look at "baby" Kaytar - she is so adorable! She's still adorable, of course, but it is amazing how much kids grow in such a short period of time. I am VERY glad that her tummy seems to have stabilized - I hope it is smooth sailing from here on out with the glucose levels.

I can't believe school is already upon us. Early mornings, here we come!

jo(e) said...

I hope things stay stable for awhile! I'm always amazed at how gracefully you handle the problems that come along.

flutter said...

oh this makes my heart happy, sweet girl!

Anonymous said...

They will feed her before the GES. The first time I had it done it was eggs, bagel, and coffee or oatmeal with a lovely chaser of "ick (aka radioative dye)" mixed in. And then you had to lie without moving a muscle for three hours (I recommend bringing CD's she enjoys listening to or something she can watch a movie on; they will set it up on a table where she can see without moving--wish someone had told me that). If you digested food quicker than that (I didn't) than they let you up sooner.

The second test it was just the egg, et al option and they force fed me. Three bites in, I vomited and the test was over.

Number #3 they warned my you vomit the test is over. So, I stopped after three bites and made it about 90 minutes; giving them all the info they needed.

Number 4 (after orginal diagnosis)was done in Indiana and they use a protocol developed by my doctor where you are there longer but eat, and get scanned once an hour; since the first thing they tell someone who has GP is not too lie down within 60+ minutes of eating.

I was sent home with pat on the back, and a "you will get the test in 7-10 days; after the NR reads and reports the results to your GI MD!"

When I returned home less than 30 minutes later, I had a message from "said, GI MD," with a message to call him back on his cell ASAP.

BAM! Idiopathic Gastroparesis (it's been since sometime in 2004 but they think I have had it much longer) with results so obviously ABnormal the doctor said he had to call me GI doctor STAT.

Let me know if you want more info.


~aj~ said...

My heart melted when I saw those old KayTar photos. Seems like just yesterday...

I'm so glad she improved over the weekend. I was a little out of the loop and didn't realize all that was going on the past few days. Hope today was a great day for all of you!