Tuesday, July 14, 2009

OK..an update with words.

Oh, thank goodness. My computer for some reason has been acting up. The wireless strength here is not the best. I tried to re-post last night and was unsuccessful. But its working now!

So, Kamden made it home last night. He brought Kendall a gift (butterfly beanie baby) that he bought with his own money. He could have spent it on candy or rocks, but he thought of his sister instead. Such a sweetie.

Justin and Kamden went home around 7 leaving Kendall and I to figure it out on our own. It was the best thing for me because I have been forced to do everything. I can now check her glucose without blinking an eye. (That's a big deal for me since blood usually makes me cringe.)

Kendall is being a trooper, but poor baby. She's been through the ringer. She achieved moderate Ketone levels last night around 8. Getting her medication down was simple with her new KetoCal formula. Everyone here has been great. We had an amazing nurse last night. Kendall didn't look sleepy until about 12:30. She went down after a 5oz bottle. Then as soon as I shut my eyes, she was awake again. This game continued all night. She fell back to sleep around 3 and at 3:30 her nurse came in to check glucose again. at 4:30 she had blood drawn, then at 5 she was up for good. We gave her some orange juice because her glucose was down to 45. She seems better now.

Yesterday I mentioned my concern for the odor in Kendall's urine. The nurses agreed and ran some more tests. She may have a UTI so we will know more on that today. This frustrates me beyond belief since I have asked our Dr, and Nutritionist through ECI and the both said it was from the Pediasure. I just pray she hasn't been getting dehydrated. We've been very careful to keep her out of the heat. I don't know what else we could do. Hopefully since we are off Topamax now she will not be so heat sensitive.

My understanding is that Topomax and the Ketogenic Diet put added stress on the liver? or is it kidneys? I can't remember (sleep deprivation) But I think it varies by Dr. But quite frankly, I'm happy to be off it. It has never really helped!

Seizures have been really horrible. Yesterday her tally was over 110. This morning we are already up to 15. No wonder she can' t sleep. I hope to see improvements today. She gets her leads taken off in a few hours. That should help. At least then we can hold her, play on the floor, go for a walk, etc.

We will have to check her glucose everyday for the first month. The test strips for her urine test glucose too, but only in the urine, not the blood. I don't really get it all. I should probably get off the computer read the papers again. I am NOT a science person AT ALL!!!

Keep those prayers coming! Today is a new day filled with hope!

4 comments:

Cjengo said...

Has there been any more mention of trying Depakene for the seizures?? I know Jude, and Kendall are different, but it was just a miracle for us.
Wow, I know you are going through a lot. I hope in the end the diet works, and all is well.

Ps. I hated topamax, it did nothing for Jude at all.

jocalyn said...

Jennifer,

I talked to 3 different Dr.'s about Depakene this week. We have decided to start the Ketogenic Diet in hopes of getting a grip on the Infantile Spasms and reducing medication. We decided not to add Depakene because of the increased risk of infection and other side effects right now. We were cautioned that Depakene tends to have short term seizure relief for children with brain malformations (which is what is causing Kendall's IS)
You're right. Every child is different and every medication works differently for each child.
I am aware that Depakote has been the right drug for Jude and am so happy for your family.
We are trusting our Dr.'s right now and going in this direction first. That's not to say we will never add Valporic Acid, just not right now. I pray this works and we won't have to add anything else. If we do, I'm sure I will be asking you questions about it.
Thanks!

therextras said...

Just wanting to leave some encouraging words for you...I am pleased you are able to begin the diet in a supportive environment. (Even if you are sleep deprived - at least someone else is helping with the meds, right.)

I am truly hopeful Kendall will responde well to the diet and you life can be about calories instead of mls. Barbara

Reagan Leigh said...

I'm so glad that things seem to be going a little more smoothly for little Kendall now. I know how tough it is to be stuck in that hospital room, I'm sure you're bored to tears! You are so right about the Depakene. I know so many kids that have become seizure free on this or that but Reagan tries it and nothing! You just have to trust your doctor and yourself. That's the best you can do. And just keep on trying until you find Kendall's miracle!