I am one of many. I am not alone. Together we're stronger. We're on a journey and all have stories, these are mine.
Monday, March 22, 2010
In the beginning, there was darkness...
I've been asked a number of times, "How did you know?" or "What made you get him tested?". Every time someone asks, I think back and try to pin-point an event or issue that could possibly have been the first sign. I guess I'll never really know for sure exactly when his little immune system turned on his pancreas, but in hind sight there are a few things I can't ignore.
Last Spring (2009), I noticed that he was drinking a lot. He was always thirsty, and at meal time he would easily pound back at least double his usual fluid intake. I didn't really think much of it at the time since for years I have gone through spurts where I'm more thirsty than normal and drink a lot; I've gone through as much as 6-7L of water in a work day and I'm in an office. After a few weeks, his thirst levelled out again and it was all but forgotten. Again in August he started with the unusually high thirst. But this time it was extreme. He was even getting up on his own in the middle of the night to get a drink of water in the bathroom. At the same time, just as we were considering ditching the night-time underpants since he was starting to wake up dry on a regular basis, he started filling at least one and sometimes two pull-ups a night.
After about two weeks of extra drinking and really excessive night time wetting, I started to worry. The lady that took care of him while we were at work began expressing concerns too. Being diabetic herself, she was more aware of the warning signs. I was in denial, and started thinking back to the spring; this is a phase and it'll pass. The third week was the kicker. Jonathan was just not himself, and as much as I didn't want to acknowledge it, I could no longer carry on believing that he was just a little under the weather. Too many people had noted the changes in his demeanour and threw up the red flags. No mater what I was afraid to face, I knew one thing, I couldn't put him at risk by just waiting and hoping.
First thing Monday morning I called our family doctor's office to schedule an appointment. Thursday was the soonest he could be seen. I'm usually a little nervous going to the doctor since I know I'm there because something isn't right. This time was different, I was a mess. As much as I wanted to pretend it wasn't real, I already knew deep down what I was going to find out very soon.
Things happened rather quickly. One of the great things about our family doctor is that the facility she works out of, housing a few other doctors, also has an on-site lab. Jonathan gave up a urine sample while we were waiting to see the doctor and by the time we were in her exam room, she had results. The "sugar levels" in his urine were high. She told us that this could be indicating diabetes, but she would get blood work done to get more information. We were given the lab req. and told to come back in a week. I scheduled his next appointment and we went back across the hall, submitted the req. and waited our turn. He ran laps around the waiting room, which wasn't odd for him, but as a frightening reminder of what we were investigating he would stop every few times around and say he was tired. He was a contradiction, active as ever but complaining of fatigue. We were called into the lab and his blood was drawn; now the wait.
I don't remember much about the evening after that appointment. Either nothing remarkable occurred, or I've blocked it from my consciousness. The following day however, I will remember forever.
That Friday we were set to go out and celebrate our anniversary, 9 years two days earlier. Everything was planned in advance, the dinner, someone to watch the kids, it was going to be a nice evening. Per our usual routine, I picked the kids up from school and headed home to make dinner for them while we waited for mom to get home. When I walked in the kitchen I noticed a message on the machine. I listened to the nurse from our doctor's office state that Jonathan's blood work had come back and the doctor wanted to see him today. "Today?" I thought. It's 5:10, this message was from early in the morning. I knew the doctors office was surely closed buy now, but I tried calling anyway. I got the recorded message I was expecting and jotted down the after-hours numbers. One of the numbers was for a nurses line. As part of the family health group we joined, we have access to an after hours nursing service to call for advice.
I explained to her what was going on and the message I had just received. She told me that we shouldn't wait until Monday, we had two options. Take him to the ER, or the weekend clinic opened at 6am. I thought to myself, what's the difference between waiting until midnight to be seen in the ER or getting to the clinic first and being seen only 6 hours later. We discussed it briefly and I decided that he would be better off not going to the ER, for a lot of reasons, and 6 hours was not a very long time. The nurse on the phone didn't specifically agree or disagree with my plan, but reminded me that if I changed my mind I could go to the ER later.
I finished making dinner for the kids and sat them down to eat. As I paced, continuing to debate whether or not to go to the ER, the phone rang. Another nurse from the after-hours line called and told me that I should not wait. Based on the doctor wanting to see him so soon, it should be considered urgent enough to take him to emergency. I let them finish their dinner. My wife and the sitter arrived at about the same time and we took him to the hospital, went through the initial screening and then waited. I was on the verge of cracking the whole time. I'd like to think that most of the time I have it pretty much together, but when it comes to the kids I don't have much emotional control.
He was getting bored, but also tired. It was close to his bed time, so we tried to relax him and encourage him to sleep. We soon realized that we were likely not going home too soon, so we made a few phone calls to have pyjamas and pull-ups brought over. I'm not sure exactly what time we were called back to the screening station, maybe around 9:30 or so, but I vaguely remember I wasn't the one to take him over there. When my wife came back with him she told me they checked his blood glucose and it was "21" (mmol/L I'd learn later / or about "378" in other units). A lady sitting near us was shocked. A relative of hers, I can't remember exactly who she said, is diabetic and that is a really high number (I know now some come in much much higher). I think that was about the time I really broke down.
It wasn't long after that we were escorted into what I call "the bed room", which is basically rows of curtained stalls with beds and some monitoring equipment, a mini hospital room of sorts. Vitals were taken, more blood was drawn, and we waited some more. It seemed like an eternity on a high-speed slow-motion roller coaster. Finally, at about 2am or so we met a doctor, who we would come to know to be a wonderful paediatrician, that had come to tell us what we were sure we already knew. Our little guy has Type 1 Diabetes and his life is now forever changed.
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WOW...brings back so many memories...the denial pre-diagnosis we definitely had that one going on here...and the hours surrounding diagnosis a blur, shock, tears.
ReplyDeleteThank you for sharing.
WOW....it is always so sad hearing everyone's dx stories. You are lucky you have a great doc ours did not even do a urine when we presented all Cara's symptoms, he sent us home, and when we brought Cara to the ER she had a BG of 53.2mmols. Needless to say we now have a new DR.
ReplyDeleteThanks for sharing your story... I also remember a BG of 21 and the nurse freaking out. At the time I had no idea what that number meant.
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