Sunday, November 21, 2010

Exhausted






Wow. Where to begin.

After our 3 and a half hour appointment on Wednesday, we left the Endocrine office with our heads spinning. Basically, we are starting the whole Diabetes thing from scratch. She now has a ratio, a correction factor, a sick day plan, and a what to do with ketone plan. All of these things are completely new to us, and have taken a lot of getting used to.

To make a long story short, we arranged for our home health company to deliver the new formula on Thursday. I was shocked when everything arrived on time Thursday morning, and we were organized enough to completely be off the diet on Friday. We have a new binder where we have her protocol and carb counting procedures. By Friday evening, her Ketones were 0.1 on the blood meter. She has been eating everything without any aversions. All textures. Including liquids out of a sippy cup. The girl likes her food. She likes it so much I actually had to restrict her intake of the Pediasure because her sugars were running so high. For two days now she has been above 250 consistently. Tomorrow I will fax in her numbers and hopefully we can change her ratio and remedy it.

Everything has been going very well. She is more alert and enjoying food. We haven't seen any of those nasty you-know-what's in a while. If they do come back, we scrap everything and get back on the Ketogenic Diet.

Last night I left for a birthday dinner for my friend, but returned before the dinner because Justin made a mistake giving the long lasting insulin instead of the short acting correction factor. Mistakes happen... He felt very bad about it. But it then turned into a second night of checking sugars every hour. Her blood sugars went to "HI" on the meter, meaning they were over 500, and in the middle of the night they dropped so low it required more juice to bring them back up. She returned to a normal sugar at 7am, but since then she is back up in the 300's. I know we will figure out the right ratio eventually. Most of the time this is done in the hospital when a child is newly diagnosed with diabetes....they have an iv, and levels are adjusted accordingly. We get to do it in the comfort of our own home. But it is exhausting.

We will figure it all out this week I'm sure. Just in time to start the insulin pump on December 10th. My mom's surgery is December 7. Kendall has 4 specialist appointments between now and then. Oh, and did I mention our nursing hours dropped?! yeah.

So, my head is spinning. I'm extremely irritable. So is Kendall, but who can blame her with such a huge sugar fluctuation. Justin and Kamden are going hunting, so I will be on my own again. But sometimes it seems like when there is just one person solely responsible for big changes with her, it works out better. I'm sure it sounds insane, but in the middle of the night, I actually dream about what her sugars are doing. I wake up to check, and on more than one occasion my dreams are right. I also set my alarm to wake every hour, but tend to wake seconds before the alarm goes off.
*****and an update.....2 hours after i wrote this....she had a freaking seizure.

4 comments:

Debbie said...

a seizure? really?

I am so sorry...
your doing awesome balancing everything, but I know the exhaustion and frustration can be overwhelming at times.

Praying it was only one breakthrough and no more...

Hugs my friend.....

Barbara TherExtras said...

Oh.no. Hoping she has not had any more seizures; you are both back on track. Thinking of you both.

Holly said...

Well Crap! I guess I read your post in that 2 hour window.

I'm going to say it's the blood sugars being all over the place, but I have no clue what I'm talking about :-)

I'm so sorry. Call if you need anything.

Liz said...

So sorry to hear about the seizure. Praying for you both.