August 25, 2007

An Inconvenient Diagnosis Part II

The meter goes up to 600. Normal is 100. Delaney was HI. That means over 600. She had slight to moderate ketones. Later in the week we tested a glass of Coke. It was over 600 too. Beer was 35. Diet coke got an error.

So she was way sweeter than beer, (literally as well as figuratively.) She's also type 1 diabetic.

She wasn't too bad yet but if a few days would be.

At midnight I tried to call Children's Hospital diabetes hot line. It was Sunday late. Delaney wasn’t a patient and they couldn’t give me anyone. Well it was a long shot.

We didn’t sleep, well the kids did, the parents didn't. We moved Delaney into the king sized bed with us.

Here is what would happen if we went to the local hospital.

  • They would take a blood test.
  • It would be real high.
  • They would test for Ketones.
  • The test would be low to moderate.
  • They may give her an IV.
  • Delaney would be packed off to the local Children’s Hospital.
  • The local Children’s Hospital would stabilize her with insulin.
  • They would hold her hostage while they made us go to 3 days of diabetic parents classes.
  • The emergency room cost about $25,000.
  • The 3 days of Diabetes Hostage Classes is twice that.

Been there done that. Not a good time.

Orlando is famous for theme parks. Children’s Hospital of Philadelphia (CHOP) is one of the top ranked kid’s hospital in the US. I would rather play in Orlando and Hospital in Philly.

Well OK, I would be happy to skip the hospital totally. Sorry CHOP I really do love you guys but more as an out patient friend, I'm not interested in a moving in kind of relationship.

This can happen with insulin. We have plenty it with us. All we need is a Rx to say it is OK to use and how much of it to use. In the early morning Kim called our family doctor. I called CHOP and left a message. Both got our cell numbers on their respective answering machines.

We called friends back home and had them break into our house and Fed Ex more diabetes testing supplies. We didn’t pack for doubles. Delaney was still scoring big numbers, had slight ketones but was in fairly good spirits. There was only one thing to do.

Go to EPCOT.

We rode Test Track - It is Delaney's favorite.

Our family Dr. called back. Bummer, he was taking the line that we should go to the local hospital if we thought Delaney needed treatment. Expected but still the wrong answer.

We rode Ellen’s Energy Dream. I enjoyed it at the NY World’s Fair in ‘64 when it wasn’t called Ellen’s Dream. I like Small World then too, still do. I was about Delaney’s age at NY Worlds Fair. I was a space cadet on Ellen’s Energy Dream. Wonder why?

Shortly after we woke up from Ellen's Dream, I got a call from Tina, Connor’s diabetes nurse at CHOP. We have taken Connor to see her a bunch of times so she knows us and our level of diabetes management skills. We talk about the numbers, how Delaney was doing and what symptoms she had and didn't have.

She agreed Delaney was OK for a few days but was heading for the hospital by the end of the week if we didn’t do anything. I allowed as how I wanted to keep Delaney out of the hospital in Florida, not have an emergency flying back, and that ninety percent of the hospital stay is the whole hostage for diabetes education thing, written tests and all.

Tina thought that hostage line was funny. (A key part of humor is the truth in it.) I considered that a good sign. It is one of my classic Evil Emperor techniques, get’m laughing with you.

I also wanted to keep playing in the parks if possible. Even the best Children’s Hospital isn't tons of fun. Disney Parks are.

Tina agreed the goal was to keep Delaney out of the hospital. She would talk to Craig our endocrinology Doc and see if they could work out treatment by phone.

Have fun, relax, she’ll call back.

Tina you so ROCK! The call was a perfect 10 as far I could tell. Lets review on instant replay. Point 1 - have fun. Point 2 - Relax Point 3 the pros are on the case they will call back. That is a trifecta.

We went off to other EPCOT attractions. Sometime in this process we realized that we hadn’t given Connor any insulin in the morning. Swift, real swift, we need suck it up and pay attention we got two of these guys now.

Memo to us:
Gotta deal with both diabetics, not just worry about the new one.

We went back to the hotel and got Connor fixed up. I was climbing the walls waiting to hear back. So rather than break the walls, I walked down to the bakery and see if they could give me information about the carbs in the snacks the kids like.

The Bakery manager / head chef Mustafa was very cool. He would calculate the carb levels of anything the kids were interested in. Now there is some wonderful personal service, that will also sell more snacks. I had just started talking with him when Tina called back.

Tina and Craig mapped out a plan to treat Delaney by remote control. Outstanding!

Tina had dosing levels for Delaney. So there I was borrowing a pen and paper from the Bakery to take notes on how much insulin to give my diabetic kid, kind of ironic.

Tina said she would (and did) call back regularly and check in. She started calling later that afternoon before her shift was over and checked in every day. Cool. I told her I was taking notes on a napkin.

She laughed and asked if it was a cocktail napkin.

"Nope. Bakery!"

"Better!" She said. She told us to enjoy the vacation and to call if we had any questions.

I went upstairs to give gave Delaney her first shot. Within a half hour lethargic girl was gone. Delaney was literally dancing around the room and doing the worm on the floor.

Oh yeah, we remember this kid! I guess that having that much sugar in your blood and suddenly getting a little insulin so you can use it gives you a big boost. She was jazzed. There was only one thing to do.

Go to Disney Studio and play!

Tina checked in daily. We got Delaney's blood levels into control before we left Disney World. When we got home we took Delaney down to meet Tina and Craig at CHOP. They said Delaney was kind of a local ledged as nobody at CHOP had heard of a kid being diagnosed type 1 and brought into control without being admitted. We said they were our heroes for making that possible by working with us to keep her from needing to be admitted.

Delaney gave them both pins.

CHOP is the best for a reason. It is the same reason Disney is at the top. It isn't the fancy flashy equipment - it is the people. People who go out of there way to provide the best service they possibly can.

People who put, "Have fun, relax." first.

Mental state count.

1 comment :

  1. Magnificent! Your family really is amazing. I wish I could have taken diabetes on by storm like that. I'm so glad to have read this post. Make it seem like everything will always be alright. Where there's a will, there's a way!