Strep

Well, thanks to my blog...and detailed documentation of Kendall's life and medical issues...I was able to diagnose her with strep!

Ok, well, the Dr. confirmed it with a swab today at the pediatrician's office.

She had a very rough afternoon yesterday. So much so that I actually had a bag packed to go back to the hospital. I caught the Dr. right before closing and he insisted we start her on another steroid. When I went to get the prescription filled and take Kamden to guitar, she started to sound better. She was breathing normally after a breathing treatment, so I never gave her the steroid.

She had trouble sleeping, just seemed really miserable. Then this morning I noticed that she had hives. All over. So I looked back in the blog and decided it was either the Xeoponex neb treatments or Strep. I called the Dr., got an appointment, and the swab in the office came back positive.

She's been running a low fever, had high sugars, croup, and has been extremely lethargic. Tonight she looks plain miserable.

And to top off our perfect day, we found out our Nursing hours have been cut. I knew nursing was never a guaranteed thing. I've always been thankful for whatever extra help we can get. I have also heard they are "cleaning house" and cutting a lot of hours back, particularly seizure kiddos, but the thing is, they said it was because she's not having seizures anymore....which....she actually is. So, whatever. We'll appeal and pray it all works out, and if not....well, I guess we'll just make due. What other choice do we have?!?

It's been a quiet week otherwise. We canceled all therapies and have stayed in our pj's.

Oh, and the good news is her Hemoglobin A1C came back as a 7.4 which is an average blood sugar of 160. In the hospital they did an electrolyte panel on her and everything looked good, but her potassium was a bit high. So, we are continuing with the wean of the diet. 2.75:1, so far so good.

Keep us in your prayers.

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.

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.

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.

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!