Monday, October 25, 2010

Home

Thanks for all your thoughts and prayers. We are home now, and Kendall seems to be doing better. The steroid did make her sugars go through the roof, but we feel comfortable with her correction factors for sick days now. She's definitely not your typical Diabetic due to the diet, so I do understand that in the hospital it puts everyone in a tizzy. Ultimately the decisions come down to Justin and me. We are the ones who have to worry about checking her sugar every 30 minutes after a large correction when she dips into the teens or 20's. Nobody wants to be responsible for that and I get it. All the more reason to come off this diet and start fresh.

We thought we were going to end up back in the hospital late last night. She gets worse at night, but with lots of repositioning and a cool mist humidifier, she made it and is all smiles this morning.

I made a quick run home on Sunday at 4am to gather the rest of her supplies. With Kendall we have to have lots of things, so when we rush out to the hospital without prep time, there's no way at all we could pack everything. Her formula has to be measured out with a gram scale, she uses a very special meter that reads ketones as well as blood sugars and they are calibrated with a special stick each time you open a pack. We keep extras of everything we can, but some things are just impossible to duplicate.

Our problems with the hospital are that not only can they not provide the correct insulin, they will not allow us to use our own. They will use our brand name Keppra, and they have the emergency Klonnopin and Diastat on the floor, but insulin is considered too high risk. They don't trust the pharmacy that prepares the U50 insulin, and they only have U10 humalog. Since Kendall uses half units of insulin on a 30 unit syringe, it is impossible to measure a half unit. All of this will be fixed when we start the pump and get off the diet.

Justin took the reigns this time at the hospital and insisted she not have an IV when she didn't need one. He also told them he wasn't going to wait around for our daughter to go into DKA while the hospital "played grab ass." and proceeded to give her the shot himself! (it was nice for me to not have to be the bad guy!) I was very thankful to have Justin there. He came home early from a hunting trip...and this was not the way he expected to spend his weekend, but he took it all in stride. Thankfully he can hold her and sleep at the same time, so I could run home and gather everything up. I can handle no sleep (thanks to lots of all-nighters in college) and still function, but the boredom of the hospital in a small room makes me crazy. Justin also helped with that by playing charades with me :) :) :) I have never laughed so hard in all my life.

So now we move forward again. Breathing treatments at home and probably a trip to the pediatrician's office to check out her ears and throat later in the week. I also hope to get her enzyme results this week and latest Hemoglobin A1C results today. She is a full time job.

Sunday, October 24, 2010

Admitted

Kendall has now been admitted to the hospital...

I'm not sure how this all happened, but she started with a croupy cough out of the blue around 10 Saturday night. It got bad really fast. I expected her to just have a quick visit to the ER, have a treatment and then come home.

But she hasn't responded to the treatments, so we have to be admitted. Her sugars are high due to the steroid. We are in the freaking hospital and I had to call the diabetic educator to find out what to do. It is simply ridiculous. And now we find ourselves without all of our supplies, pump, brand name keppra, ketocal, diluted insulin. What do you think the chances are we will have those things by tomorrow morning? Yeah. I won't hold my breath.

So say a prayer for sweet Kendall. Getting rid of this quickly and without any major complications would be awesome.

Thursday, October 21, 2010

Songs of Love

This post is overdue....but things have been a bit crazy for us lately!

I'm sure I've mentioned before how much Kendall loves music. She has it on all the time. Kid songs and mommy music usually top the charts, but she does love her brother's sweet voice singing along with the guitar.

She can usually be consoled with music too. She listens to the words. (like in "if you're happy and you know it" when she nods her head or tries to clap her hands)

Kendall's sweet Aunt Val arranged for a song to be written just for Kendall through Songs of Love a non profit organization that provides the "Medicine of Music" to kids all over. Steve Schuffert wrote and performed the song just for Kendall and it is just precious. Kamden was excited to hear his name in the song too.

So, big thanks to Aunt Val for arranging the song and having it sent to us. I can't upload it to the blog; however, it is available for our friends and family to download for a small donation by visiting their website and entering Briggs in the last name field and 22064 in the record number field.

Here are the lyrics of Kendall's Song

She likes playing peek-a-boo with Mommy.
Reading "Bunny my Honey" too
She likes playing patty cake with Poppy
Swinging and swimming too.


Kendall, Kendall
I'm singing your song
Kendall, Kendall
This song's for you.

There's Nonna and Grandad
Mommy, Daddy, Kamden and Nonnie and Poppie too.
She likes riding a little horsey on Daddy's knee
She's as sweet as sweet can be

Kendall Kendall
I'm singing your song
Kendall Kendall
This song's for you.

So, a big thanks to Aunt Val for thinking of us, and giving us a song we will treasure always. Kamden's already trying to learn it on the guitar :)

If you have a chance, check out the website, make a donation, or nominate someone you love who could benefit from music too.

Tuesday, October 19, 2010

Getting Better










Last night was another long one. Sunday night the crazy sugars were definitely my fault, but last night was not! Kendall has been running a low fever, we think because of teething, the flu shot, or a little virus running around without symptoms. Her urine is fine, so we've ruled out a UTI, and she doesn't have blood in her urine, so we've ruled out kidney stones... Either way, whatever it was made her sugars soar into the 400's around bedtime. Her ketones read "high" on the meter, which has never happened before. I called the Diabetic Educator who paged the Dr...who called and told me to go with my gut! My gut being not to give her a whole unit of humalog in addition to her sick day correction. Instead, I only gave her a half...and thank goodness because she came down dramatically and by 2 am she was in the 50's...if it's not one thing its another!


My dad came over and spent the night to help out. I thought we were going to have to go into the hospital, since her original correction didn't lower her out of the 400's. She was peeing a lot, and I had to give her 60ml bolus feeds of water to keep her from dehydrating. I was also afraid that since I hadn't slept at all I wouldn't wake up to my hourly alarm to check her through the night...I was right! But my dad didn't wake up to it either at 2, so she went unchecked until 4! But she made it through the night, and she's OK now. That's all that matters.


And thank goodness my husband is coming home tonight! I fully intend on having a glass of wine and watching the Rangers game!!!


***these pictures are past due. I just wanted to share Kendall smiling through all the crap she endures! And the picture of her and Caleigh at the zoo...maybe one day we will have a picture of those two girls both looking at the camera and holding their heads up!

Monday, October 18, 2010

When it Rains it Pours


I'm sleep deprived. I mean really, really, really, sleep deprived. I'm using this blog this morning as my outlet. Justin's out of town, my sister won't answer her phone, and it's too early to bother anyone else!
Kendall's been very fussy. Yesterday she started having seizures again after her nap. She's had a low fever, but her ears look fine, and she's not congested at all. She sounds a little like she may have a sore throat...but I can't ever tell.
I ran 16 miles late yesterday afternoon as part of my training program for my upcoming Marathon. I drank plenty of Powerade and had 3 helpings of Gu...but apparently I didn't get enough water, because I've been achy and had a horrible tummy ache since I got home last night.
Being dehydrated (even if it's my own fault) sucks when you're taking care of a cranky Kendall alone. My head was a little fuzzy and during her nighttime routine I mistakenly gave her her morning dose of insulin instead of her bedtime dose. It's a pretty significant difference. I called the Diabetic Educators, and was instructed to do sugar checks every hour of the night. Even staying on top of it, her sugars dropped into the 20's. Super scary. So between me running to the bathroom to throw up and checking her sugars and watching for seizures all night, I didn't sleep at all.
Then I just got the text that our Monday nurse's car battery is dead.
Super.
I'm going to muster up the energy and get Kendall to the Pediatrician this morning and have her repeat blood draw as soon as I feel she's at a point where I can safely take her in the car without a very low blood sugar scare.
I'm feeling sorry for myself today. I know I'm blessed in so many ways, but seriously, normal would be really nice now and then. I just want sleep.