New Doctor, New Regimen - seems to be working

So we saw the doctor who will be our permanent endocrinologist yesterday. It was a crazy, hectic appointment because we had to go to Children's Hospital in DC; AND, it was the Doctor's day "on call" which is the only way she was able to actually see us.

She was frustruated with the regimen that the doctor in the hospital had put Emma on; as we were since her levels hadn't stabilized over the week and a half we'd been out of the hospital.

She started a new regimen yesterday. We like it for a variety of reasons:
- We increased her "long lasting" dose (her Basel). This is supposed to be the insulin that manages her throughout the day.
- We changed to a fast-acting "after meal" insulin for adjustments(Bolas). This is great because its based on her level before eating AND how much she eats. If she wants more carbs at a certain meal, we can increase her dose to adjust. If we can't seem to force the food in her mouth (which is often the case), we just decrease her dose. This is GREAT for a child who isn't in a position to understand the need for a certain amount of food.

In the past 24 hours, she hasn't gone above 250 (whereas she had been averaging higher than that most days). She has been staying mostly between 80 and 150 - and our target is 180!! So, for us, we are thrilled with the way her body is reacting. Of course, this could also mean her pancreas has kicked back in for a last hurrah, but either way, she isn't swinging and that makes us happy.

Baffling Body Chemistry

I assure you, after we get through this initial phase with Emma, it won't all be about her Diabetes. But for now...

Emma had a pretty good day yesterday. He numbers were getting more normal and the night before when I felt certain she was going to drop really low (because of her evening numbers), she stayed right on track. The one nurse I talked to said that her pancrease could even be beginning the "honeymoon phase" (after a person's sugars get back under control, their pancreas will often begin secreting insulin again. It's not much and it doesn't last forever - its sort of a "swan song" for your pancreas.

Well, Emma's body chemistry said "ha".

She was high over night (over 300). High enough for me to page the doctor, which I'm sure she loves at 3:15am! The Doctor had us give her an extra little dose of insulin overnight. But, her breakfast reading, morning snack, AND lunch readings were ALL over 300. It just doesn't make sense with the amount of insulin she had. It even baffled the nurse on the phone at lunch when she was deciding what to do. Both the doctor and the nurse made a comment "maybe she's coming down with something" (at which point I just wanted to pull out the gun and shoot myself). Getting a bug evidentally messes up your sugars too. Well, the nurse said to do Emma's normal dose and then check it about 3 hours later, when it should have been in effect (and the morning dose should still be working, since they overlap).

She was 150.

It just makes no sense, after being close to 400 for 12 hours, for a drop to 150 just 3 hours later!!

Baffling disease.

But hey, we got in with the new Endocrinologist on Monday. We have to drive all the way to DC for the initial visit BUT she got us a 10:30 appt, instead of the originally proposed 9am (which would have meant a 7am departure!)

The kind of post you wish you didn't have to post

For those in our immediate family and close friends, this is not new information. For others, it is.

Last Wednesday night at 10pm, I took Emma (our 2 year old) to the Emergency Room with extremely high blood glucose levels (a normal person would be between 80 and 130 and she was at 580). She was immediately admitted to the ICU and diagnosed with Type I (insulin dependent) Diabetes.

She stayed in the hospital until Saturday when she returned home and we began the processing of testing, and insulin shots on our own. I have spoken to the Doctor no fewer than 2 times a day since we have returned, and we have constantly been tweaking and modifying her injections until her body adjusts to the insulin and stabailizes.

I am happy to say that she has been "almost" stable for 24 hours. She had one "higher than normal" reading overnight, but the Doctor is fairly confident as to why this is happening and after leaving things alone today, she may make one more adjustment tomorrow that will probably address that reading.

But that's not the end of it. She will always have to monitor her sugar levels, and watch what she is eating. Right now, the struggles are making sure a 2-year-old eats what she needs to eat based on our injections. As she gets older, it will be more a "defiance" that will cause our challenges. And each growth spurt, and illness will be cause for adjustments.

But for now, we are just happy she is home and acting as though nothing has changed. She acts like nothing has happened and right now, she is currently transferring crayons back and forth from a lunch box to a Ziploc and back again (I think she has done this about 10 times now).

So for us, we have a goal of this having the least impact possible and being able to do things just as we normally have done. I do expect, however, that she will be eating more than one meal fed from tupperware at the soccer or baseball field so that she doesn't get off schedule.

From time to time, I will provide updates here, as its easier to cover everyone here than remembering all the emails I need to send!