Thursday, May 13, 2010

Rufus' Birthday, Part Two

Continued from Part One...

Except that our night was far from “settled”. Of our three boys, T-Bear was the least likely to deal well with hospitalization. He was terrified of doctors, terrified of nurses, terrified of medical offices and hospitals, and had to be held down just to get his immunizations. For T-Bear, being in the hospital with needles being stuck into him and tubes coming out of him and people stabbing him every two hours was simply a nightmare. And, to top it off, they wouldn’t let him eat or drink, and he was starving and thirsting from the high BG. It was a very, very sad night. And, for the second night in a row, I didn’t sleep, spending hours and hours holding his hand and soothing him. I caught a few cat naps on the folding-down chair-that-wants-to-be-a-bed during those times when T-Bear drifted off to sleep due to sheer exhaustion.

On Day Two, I sent a brief (probably curt) mass e-mail to everyone in my address book explaining that T-Bear had been diagnosed with Type 1 Diabetes, and that I would be posting regular updates on our newly-established blog. The messages of sympathy and support were nearly overwhelming, and deeply, deeply appreciated. It was a blessing not to have to field a dozen phone calls, or send out e-mail updates and then feel pressured to respond to the individual messages. The blog turned out to be one of those nifty little gifts from the universe, perfectly timed to perfectly fill a need during a very difficult time. I’ve realized that it’s also a gift in that we now have a day-by-day, blow-by-blow, woman-on-the-scene record of those very significant and important days in our family’s history. And, if ever T-Bear asks, “What was it like when I was diagnosed?” we’ve got a record of his journey right there for him.

The Arnold Palmer Hospital for Children and the staff were fabulous. T-Bear was in a care suite set up with two beds (the other bed was empty) and a separate room for a more intensive care patient, and the shared nurse had her station in the suite. She was there, in the room, almost all of the time, taking care of her paperwork, phones calls, etc. right there, and only two patients to look after. Everyone we met was caring and understanding and supportive, and seemed to definitely know their business. It was another one of those blessings in disguise that we ended up there, and that we got a referral list that led us to our permanent Pediatric Endocrinologist, who we adore. If we’d been at home, we would have ended up with much different care, and probably would not have ended up with Dr. A and his wonderful staff, which would have been a tragedy.

T-Bear continued to respond well to treatment, though he really, really wanted to get out of there. It got a bit easier for him when the Child Life lady brought in an Xbox for him to play on (blessed distraction). We were brought a backpack from JDRF; T-Bear got his buddy, Rufus, and I got about 20 lb of information to sift through. Just the beginning of information overload. Papa Bear and I met with the Certified Diabetes Educator (CDE) for a run-down on diabetes and its management. In one of those moments that reminds me why I love him so much, Papa Bear asked the CDE if he couldn’t just give T-Bear half his pancreas so he wouldn’t have to take insulin every day for the rest of his life (the answer is “no”). Then, we met with the dietician for T-Bear’s meal plan and carb counting basics. That evening T-Bear was taken off the IV and was allowed to eat a meal, I did my first blood glucose test on T-Bear, and learned how to draw an insulin dose (thankfully, the nurse took care of the injection).

After an uneventful night, I took care of BG testing and insulin dosing, we hung out with some of the other kids in the play room, and managed to get released by mid-afternoon. Papa Bear, Brother Bear and BooBoo Bear brought T-Bear a bright orange flight suit and cap from Kennedy Space Center, along with a teddy bear dressed for a space walk. So, T-Bear made his exit from the hospital riding in a wheel chair, dressed in his astronaut suit, and cuddling three bears; Rufus The Bear With Diabetes, Space Bear, and Rock Bear (given to him by the ambulance crew during his transport from the ER to the hospital). It was pretty intimidating the amount of STUFF we were being sent home with, but being the Organization Queen that I am, I had it all sorted and ready to go. We managed to drop off, have filled, and pick up the first of MANY prescription orders for T-Bear so he would have syringes with which to inject insulin for dinner (I love Walgreens). And, after deciding against eating out for dinner (I almost choked when Papa Bear suggested it), we got pizza at our resort suite and had a quiet night. Except for the 2:00 am BG check.

The next day, we headed home. On the way out of town, juggling my cellphone, a bag full of D-stuff, and The Calendar In My Head, I managed to set up a follow-up appointment with Dr. A for later that week, and have T-Bear’s records transferred from the hospital to Dr. A’s office from the comfort of our truck (I LOVE technology). A ten-hour journey by car with a child newly diagnosed with diabetes, and a mom who was trying to be confident in her ability to take care of him. Totally screwed up the carb count at Subway for lunch; he was on R & N insulin at that time, so I was trying to match up a sandwich he would actually eat with the carbs allowed for lunch. But, of course, he survived my bungle (the first of many). And, I don’t think home ever looked so good as when we pulled in late that night.

So, I pretty much consider reaching home the end of our “diagnosis story”. Of course, it’s really not the end of the story, but just the beginning of this particular leg of our family’s journey. For anyone who would like to read about how this story unfolded for us day-by-day, here are the links as I posted them.

A Diagnosis May 14th
An Update May 14th
Another Update May 14th
Friday May 15th
Friday Evening May 15th
Heading Home - Saturday Morning May 16th
Saturday Evening - HOME! May 17th


  1. We used Regular and NPH and that stuff was very sucky to work with. That is all I'm going to say about that.

    What a vacation! What a blessing blogging was! Total inspiration to start it when you did!

  2. Jesus Mo! I knew bits and pieces of the story, but to hear it in detail...sheesh...made me cry!

    I'm so happy for you and T-Bear that you have the pump now. It helps me fully understand what you've been going through the past year.

    Hugs and blessings to you all!

    ems :) xoxo

  3. Life and the many twists and turns! You handled it magnificently!