Friday, February 15, 2008

Diagnosis

Many people have asked me how Sáin was diagnosed. Here is our story:

Sáin was an extremely healthy baby and toddler. You might actually say she was freakishly healthy. Her first cold didn’t come until she was 18 months old. Even then it was just a little runny nose, nothing else.

In November 2004 Sáin got the flu for the very first time. There was nothing distinct about this flu; I think every kid in her preschool class got it. But Sáin never recovered from that flu. She started getting more tired and irritable but I didn’t think anything of it – Sáin was five and growing. I honestly thought that’s all it was.

As the early months of 2005 progressed, so did Sáin’s symptoms. Every kid’s symptoms are a little different but for Sáin there were some tell-tale signs. In the month of March Sáin dropped from over 40 to 34 pounds, slept whenever I would let her, never played or laughed, she could never get enough to drink and she was always going to the bathroom.

On 05 April I called the doctor. Looking at the symptoms now it seems I should’ve called earlier but I kept expecting her to improve. She didn’t. Our family doctor got Sáin in right away when I called and described the symptoms. He did one test and sent us right to Children’s Hospital. I remember asking if we could wait until the morning – it was 5:00 pm and the last thing I wanted to do was pack one kid up for Grandma and Grandpa’s and the other for a trip to the ER. I am grateful Dr. Molina said I couldn’t wait and I truly think I owe him my daughter’s life.

Aidan went to Grandma and Grandpa’s and Sáin went to Children’s Hospital. The only thing I remember about the drive was passing the Denny’s exit in Newcastle on 405 but I could tell you everything about the ER. It was packed that night. I could go into detail about the crying baby and the man who thought Sáin was getting preferential treatment. (His kid was there for a sore throat.) I remember the cat sticker Sáin got from the triage nurse and I remember the sticker they gave me identifying me as a mom. To this day I haven’t been able to watch “The Incredibles” because that’s the movie that was playing in the waiting room and it still, 3 years later, brings back too many emotions.

They got Sáin back right away (much to the dismay of the man whose kid had the sore throat.) This is the point when everything around me became fuzzy. It was like the effect you often see in photos where the center image is focused but nothing else is. Sáin was my focus; nothing else mattered. We had 4 interns and 2 nurses. They took blood and urine and immediately hooked Sáin up to 3 IVs. She was so scared; so was I but I did everything I could to calm her down. It seemed like hours but was probably only minutes when they all came back. “Hi, I’m Doctor Richards. I’m an Endocrinologist here at Children’s. Your daughter has Type 1 Diabetes Mellitus.” All I could say was, “okay.” I didn’t know how to respond because I didn’t really know what I was responding to.

Sáin had her first insulin shot at 9:47 pm on 05 April 2005. She cried. One of the interns told me Sáin was in DKA and 12 hours from permanent damage or death. I didn’t cry; I was in shock and I didn’t know what DKA was. I wish those letters still meant nothing to me.

By midnight they had a room ready for us. That was my first time in the Train Elevators and the first time I hear “Giraffe” referred to as a location. It was in the Train Elevator that I first promised Sáin I would find a cure and that was the first time she smiled in weeks.

We were in Children’s a week. Each day Sáin got better and better. She gained all the weight back, starting laughing again, and went back to being the great kid she is. I learned in a few days the things doctors get years to learn. Suddenly my daughter’s survival depended on me. It was (is) a scary feeling.

I guess diagnosis ends when you go home – then the challenge really begins. Life with a chronic disease – but that’s another story.

(All the researchers we’ve encountered feel whatever flu virus Sáin got in November 2004 triggered the autoimmune response causing her diabetes. The guilt I feel about not getting her a flu shot is overwhelming. The shot probably wouldn’t have stopped it but I can’t help wondering “what if.”)

2 comments:

pancreasmom said...

Wow, I am thankful for you sharing your daughters diagnosis story, not that ours was so different, but it reminds me of all the details that will be forgotten in the overwhelming 'diagnosis' week fluster... I just may write my sons out too. Thanks for the inspiration. Also, we all 'blame' ourself or question the 'what ifs' but most importantly (and I only remember this on good days) is that we now care the best we can for our diabetic children (and non diabetic as well of course) and move forward and collect knowledge and experience to give them the tools to best manage the cards we have all been delt.

Bobby said...

I just stumbled across your blog. My son was diagnosed over 3 yrs ago too! We live in WA state (Federal Way).

Hang in there! Sounds like you do a great job handling everything, as does your daughter!!

Bobby
www.JakesCrew.com