Thursday, July 14, 2005

One Year Ago This Morning~Our Diagnosis Story

One year ago this morning, bleary eyed in the ER, scared to death we'd lose our son for good, we heard the words "Your son has diabetes."

To mark this anniversary, I'd planned to write something really special for the blog. Something well-thought out and crafted, acknowledging what had happened, educating people, BLAH. Something worthy of the enormous changes that diabetes has brought into our lives.


I couldn't do it. I haven't really wanted to look at this anniversary. But, we do plan to acknowledge it as a family. Tomorrow we're all going to an amusement park. Seems kinda sick to outsiders to "celebrate" a diabetes diagnosis, but what we're marking is the tough year we've all gotten through, and how brave and strong we've ALL had to be.

Anyway, I wrote this as an email to a friend awhile back, explaining what had happened to us. I promised my fellow D-bloggers a diagnosis story, and this is as close as Im gonna get this year. Sorry it's so poorly written. Xx M

During the summer of 2004 and in the months just before, our son had been drinking a lot of liquids, but we brushed it aside because the weather had been hot and he's very active. It was more an annoyance than anything else. Then he began to lose energy, grow tired and listless, and lose weight. He lost 10% of his body weight in two weeks. We went to the pediatrician numerous times but were turned away with "he's under stress from school" "he's under stress from summer camp" etc. Once we were even told to look for intestinal parasites, get stool samples and send them to analysis, etc. Meanwhile, he continued to lose weight. He didn't want to do ANYTHING. No bike rides, no park visits. He just lay on the sofa. And he was ravenously hungry... and still lost weight.

My husband said to me under his breath, two days before the ER visit, "I think he's dying..." And I was furious with him for saying such a thing. But know what? It breaks my heart now to type this... but he was right... in the old days, before insulin, kids used to die of type 1 diabetes, and this was just how it happened...

The day before diagnosis my husband took him to the pediatrician. Again we were told "the child is under stress, and he has strep throat. Take these antibiotics and he'll be fine in 24 hours." At this point the child smelled llke a stick of Juicy Fruit gum and was in severe diabetic ketoacidosis. (Not that WE knew what that meant, but the pediatrician should have!) We were sent home.

12 hours later he awoke vomiting and hyperventilating. He could no longer stand up, and could not speak. He could only blink for yes or no. Although he did not fall into a coma, he was drifting at the edge of consciousness as we took him to the ER. Within 10 minutes we had a diagnosis and to tell you the truth, by that time it was a relief. Because I thought it was leukemia. I really was afraid we were going to lose him.

He was so dehydrated they had to bring in a neonatologist to get an IV in his skinny little veins and get him hydrated. They couldn't start the insulin until he was hydrated. And they had to move very slowly with the insulin because he was quite acidic at that point and if you adjust the ph too quickly you can cause a hemorrhage to the brain. They had to rush him to UCSF Medical Center so the specialists could treat him. He was there for 4 days.

Most of the time he had three IVs: saline, insulin, and potassium. The potassium one was in the original IV they started in the ER to hydrate him (their first priority), and when it started to get old, the potassium burned as it entered his veins and he screamed in pain for most of the night until they decided to start yet another IV and remove that one. I slept in the room the whole time--I refused to leave--and my husband stayed with our daughter and shuttled her back and forth.

I didn't know till later how close it really was. He was only hours away from coma. We are very, very lucky. Also, I'm glad we live near San Francisco. We would have been in a helicopter instead of an ambulance if we had been somewhere like Auburn or Ukiah. I'm just glad we live in 2005 and not 1905. Because of insulin, we have our child with us today.

Well, that's all I can manage for a diagnosis story. Maybe someday I'll pretty it up, but for now, well, this is it. We've learned a lot this year, some of it regarding how to manage this disease (8-10 blood sugar tests every day; 4-5 insulin shots per day); some of it regarding potential complications, which we'll do everything to avoid (renal failure, blindness, stroke, amputations, heart disease); some of it regarding the rights our son has regarding accommodations at school; some regarding advocacy, research, and outreach (The JDRF and Join Lee Now). I learned the truth about some of my friendships (some friends really stepped up to the plate, learning everything they could about diabetes; a few weren't so supportive and claimed that by advocating for our child at school and getting involved in the JDRF, we were making "too big a deal" of the disease--fortunately these folks were the CLEAR minority, and aren't part of our lives anymore). And perhaps most importantly, we ALL learned a lot regarding our own inner strength and cohesiveness as a fmily.

One thing I'll say, I don't know how I would have managed without the Children With Diabetes online community and parents mailing list. These wonderful people have been my touchstones this whole year. In CWD I found my refuge.