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.

5 comments:

Bronx Cataldo's said...

Way to go Justin. Love it.
I had a run in with them over Finnians meds and I too gave him his home meds as No One was going to *&*&* up his schedule.
Give that man of your a big kiss for taking charge.
Glad that you are all home and getting back to normal what ever that is.

Reagan Leigh said...

So glad Justin was able to come home and help! I still can't believe what a mess everything is with the hospital!! Isn't it crazy...this is a hospital and they aren't even equipped to give her her daily meds!?!? I just can't understand that! I'm glad that you are finally home. Hopefully everything will settle down and you can get some rest! There's no rest going on over here right now so I certainly feel your pain!

Landon Michael said...

I have just started reading you blog lately. Sorry you guys ended up in the hospital. Things never go as planned there. Our son Landon just started the KD on October 11th, and came home with c diff. He started refusing a bottle in the hospital and now has a NG tube. Did you have any issues with the kd and drinking?

Hope things are better now your home!

ANewKindOfPerfect said...

I am glad that Kendall is home and was smiling today! I hate being in the hospital when they don't do things the way we do. The right way. I'm glad your hubby took charge and did what was best for Kendall. I love that you played charades. It is SO mind-blowingly bloring in those little hospital rooms!

Anonymous said...

I just cracked up thinking of playing charades! Hospital stays are not fun, most definitely boring, but how cool that you were able to think outside the room and play charades!

So glad that you are home and that Kendall is on the mend!

Dannette