Tuesday, March 23, 2010

... And then there was light.

Our first week as D parents, like many, was spent in the hospital. Being admitted in the early morning hours of a Saturday meant that clinic staff would first visit Jonathan on Monday, but there was always a nurse just a few meters away and someone was coming in to check on him regularly and all hours. His new paediatrician almost seemed to live there and our family doctor came in to visit him too (yes on the weekend!).

We also got an unexpected surprise: As it turns out, my mother's cousin's son also has Type 1 Diabetes. She and her family were up to see us that very first afternoon in the hospital with a care package and a lot of encouragement. I could never adequately express my gratitude to them for their compassion and generosity as they helped us to get Jonathan started on his journey and as they have been there whenever we needed advice or insight.

One of the first things we learned was that there was a veritable army of people that had Jonathan's back. Doctors, nurses, diabetes educators, dieticians, social workers, children's life services, and the list goes on. They are also there for us too. Whether it was intentional or not, they made sure we never felt like we were going to have to face this alone. I took great comfort, and still do, in the fact that we have access to so many experts, a great team to help us manage this disease.

Early on, we discussed treatment options. Basically, what it came down to was that we had two insulin regimens to choose from - we were told he probably wouldn't be pumping right away. One option had an extra injection but also allowed a little more flexibility, so we chose that one because I had already made up my mind that while diabetes would from now on be in the forefront of our thoughts and plans, we were going to minimize it's impact to our son's life. What this means is that while keeping his health and well-being our number one priority, all things being equal we were going to choose options that differed as little as possible from how his life would have been without diabetes.

And so it was on. The first couple days in hospital the nurses performed the glucose tests and administered the injections. We watched, sometimes with great difficulty, as they had to pin him down while he fought back. What 4 year old kid wants to have needles anyway? This was all new and frightening to him. He didn't understand what was going on, we were just barely scratching the surface ourselves.

We got a crash course in biology, endocrinology, pharmacology, diabetes, and how Jonathan's life was going to be. A lot of information to take in over a short period of time but we were extremely fortunate to have a top notch team of diabetes educators without whom I'd probably have lost my mind. Just as fortunate, we still have access to this team as they help us manage by reviewing our data and consulting on dose changes.

They had us quickly put into practice what we had learned. It was tough at first. I was really hesitant to stick a needle into my beautiful little guy, but knowing what would happen if I didn't was a good motivator. The first couple kicks at the can were, in my opinion, nothing short of a spectacular blunder. I recall vividly the first injection I gave him was in his right leg and he was squirming so much that as I slowly approached with the pen, he moved and the needle scratched him. I pulled back and then quickly inserted the needle into his skin, pushed the button, and the pulled right back out only to see the insulin ooze out reminding me that I had forgotten the ten count. I had no choice, I had to let it go. There's no way to determine how much came out, so I couldn't try again until later.

Over the next few days, as we continued to work with the team at the hospital, we slowly became a little more comfortable, a little more capable, and ever so slightly more confident. Aside from the finger pokes and injections, Jonathan was really starting to like this whole thing. He had his meals served to him in bed. He had a TV and DVD player in his room and could watch whatever he wanted. He had many pretty ladies visiting him all the time. He had access to a very large toy room and people that would play with him and do arts and crafts while mom and I were busy learning as much as we could. It was probably the best vacation he ever had. I can't say enough good things about the hospital and staff. They went out of their way to turn our nightmare into a positive and beneficial experience. Now, I'm not saying that diabetes isn't still a horrible thing, it's awful, but my point is that they did everything humanly possible and then some to make a horrible situation as good as possible.

The day was coming. Time had flown by and it was almost time for him to be discharged. There was some back and forth as to when we'd actually leave though because we had one more challenge coming upon us: Mom was having surgery and would be laid up for a little while. We had been through a more aggressive surgery a year earlier and somewhat knew what to expect, but the question now was how best to deal with diabetes and recovery. Our son's paediatrician was very open to working with us on what was best for the family. In the end it was decided that mom and son would be discharged at the same time. I remember the final hours being very chaotic and all kinds of last minute changes and unknowns, at least from my perspective since I usually plan everything out to the Nth degree. But we sailed relatively smoothly out of the hospital and back into the real world.

The mass confusion I brought upon myself as we prepared to leave the hospital I think helped to shield my mind from the potentially paralyzing fear of re-entering the world with our new-found responsibilities. It reminded me of the first time I drove by myself. I had just gotten my license and my mother was on the phone and was going to be a while so she told me to drive myself to work instead of waiting for a ride. It was only a few blocks but I was so close to being late I didn't even have time to think about the responsibility I had just assumed for the first time, but about half way through my shift I realized I was going to have to do it again. In similar fashion, I left the hospital with so much on my mind that I completely lost sight of the fact that we were going to, for the first time, be taking care of our son without the safety net of being at the hospital.
I seem to recall the first night going ok. Over the next few days I was constantly testing his blood to see what his glucose levels were and there were corrections in both directions. I slept very little those first few days, but the one thing I had on my side was time. I had previously scheduled vacation time to take care of my wife after her surgery so work was not a factor in this first week. Somehow I managed to maintain my sanity despite it being a holiday weekend and the clinic being closed. His doctor gave me her pager number and the number for the paeds desk - thankfully there was no cause to use them.

After getting through Labour Day, I must have called the clinic at least twice a day to let them know what was going on and ask if I should be changing anything. I had a really hard time gauging his blood sugar based on his actions and behaviour, and I still do. Occasionally his highs and lows will line up with mild symptoms, but more often than not I find a normal level when he's acting strangely and sometimes a high or low when he's being perfectly normal. During this first week at home though I found this especially frustrating but fortunately we are able to test him as often as necessary. I can not even imagine what I would have done 10 or 20 years ago.

Out of everything, I'd have to say that home life was the easiest adjustment for all of us. So many of the variables are in our control there and we can react quickly to changes. Being at restaurants and other people's houses is still a challenge and probably always will be. It's also at this point that I have to admit that I think we've been really lucky in that things haven't been as wild as some other stories we've heard. From some of the stories I've come across, I've only been able to conclude that Jonathan's case is one of the more easily managed ones although as we all know, things can change in an instant.


  1. My husband describes the hospital education part as "drinking from a fire hose"...there is so much information given in such a short time.

    Going out and friends houses will get easier over time. You will be dumpster diving with the rest of us trying to find the nutrition info of foods served at parties etc. Eating out still sends us on a roller coaster ride of numbers.

    Jonathan is a cutie BTW.

  2. Thanks Reyna! And I agree with your husband.

    We have a little helper though, and it was worth every penny: http://www.cutleryandmore.com/scale.htm Fits nicely in a little laptop bag with room to spare for his other supplies.