Welcome to the new normal…

I don’t know how to start this post other than to just jump right in, so here goes…these are just the facts for posterity’s sake. Most of you readers already know this story by now, but I wanted to document it so I could move on to what’s happening now and how we’ve been feeling and coping. Read on, dear readers.

Cooper was sick with what we thought was possibly a viral infection for about 10 days, from August 30 to September 9. He was lethargic, not eating well (if at all), not interested in any activities. We were in touch with our doctor who was monitoring Cooper’s progress over those 10 days. Cooper had lost almost 3 pounds since his 2-year-old checkup at the end of July, and we were definitely concerned, but not panicky.

On the morning of Saturday, September 10, after having a major appetite increase for the three days prior, Cooper woke with a complete disinterest in food and activities. After eating so much the days before, I assumed he was just catching up. I figured I’d give him through nap time to see what was going on.

That morning, I prayed for him to be well and for a miracle to be worked in his little body. I prayed that if there was something serious going on, we’d have wisdom about how to proceed.

When Cooper woke from a two-hour nap, he was so weak, he couldn’t hardly hold his eyes open. He didn’t want to get out of bed, he didn’t want to be messed with. I left the light on and gave him some space to get woken up. After a few minutes, when I went to peek in, I saw him trying to pull himself up to a sitting position. He couldn’t do it. His arms gave out and he just fell back to the mattress.

I left the room to talk to Paul and just started crying. It was obvious something serious was going on, and we needed to move on it. I called our pediatrician’s after-hours line, and left a message asking where we should take him. We went ahead and got in the car so we’d be on the move when we heard back from them. When they did return our call, they said we should take him to Levine Children’s Hospital in uptown Charlotte, and we should go straight there.

At the hospital, we checked into Emergency, they took Cooper’s vitals, pricked his finger for a blood test, and put us in a triage room. Within a half hour of us being there, a LOT happened. A person came in to draw blood from his arm, someone else came to get a urine sample from a catheter (that was the worst for all of us, especially Cooper, I’m sure!). We were asked questions about why we brought him in, what had changed, what had he been like.

A doctor came in more quickly than we would have thought and told us they were pretty sure he had Type 1 diabetes. I don’t remember the exact words she used. She was young, looked younger than me. When my eyes teared up, so did hers, and I appreciated that. I was holding Cooper on my lap and conscious of the fact that I didn’t want to have a major breakdown right then. There was a lot of information to take in, I didn’t want him to get more upset. I tried to hold it together.

I failed.

When the doctor and all the others finally left us alone to wait on the endocrinologist to come in, I lost it.

Over the next few hours, we spoke to a pediatrician and the endocrinologist, and they told us what the plan for the night was. A normal blood glucose (BG) level is between 80-140. Cooper’s was over 600. A normal bi-carb level that measures acid in the blood is mid-twenties. Cooper’s was 6. We would be placed in the Pediatric Intensive Care Unit (PICU) and work to get those two numbers within normal ranges overnight.

That night, Cooper had a stick in each hand – one was an IV with an insulin drip and fluids attached, and the other was to draw blood. His BG was checked every hour and blood was drawn every two hours. With all of those interruptions, I wasn’t expecting to get much rest, but I was surprised. Cooper would stir for the blood tests, but go right back to sleep within minutes. I slept 20-30 minutes of each hour, and it was deep sleep. I was emotionally and physically exhausted and I willed myself to sleep when I had the chance. There was only a small loveseat in our room, so Paul slept in the family room a few doors down.

By the morning, Cooper’s BG was within the normal range, but we had to wait for his bi-carb number to get up. Throughout the day, he was pretty chill, unable to use his hands because of the sticks, so he just hung out and watched TV in his bed. We couldn’t hold him because of the IV’s and monitors, but we stayed close and he did really well.

At 6:30 p.m., we did our final PICU labs. When the results came back, things were in a good enough place that we could move to a normal room. Administrative things often move slowly in a hospital, and it took a few hours to get moved. In the meantime, Cooper’s sticks were removed and he got really giddy! He was feeling better, he could use his hands, and he wanted to play the iPad! It was such a wonderful experience to see his personality start to come through again. We hadn’t seen it in a week and a half!

Once we moved to our regular room, the process to find our new normal really began. Cooper moved off the insulin drip and on to injections. I began doing his injections the second day we were there so that I’d have plenty of practice before we went home. He was cleared to eat whatever he wanted, and boy did he want to eat!! He downed hot dogs, grilled cheese sandwiches, bacon, pancakes, cereal, cookies….whatever he could get his hands on! And he relished it. “MMM! That’s good! Mm, bite!!”

We settled into a routine and were so excited by his progress. The diagnosis had been confirmed the morning after we were admitted, and clearly we were on the right track. By Monday afternoon, Cooper was asking to get down out of his bed, and we even ventured into the kids’ playroom several times. He fell in love with the movie Cars, and played games on the iPad continuously. It was great.

On Tuesday morning, Dr Vanderwel, our endocrinologist gave us the all clear to come home. He said if we did not feel confident about taking care of Cooper at home yet, he could approve us for one more night in the hospital. Besides the dollar signs that flooded my brain at the thought of another night in the hospital, I truly felt we were as ready as we’d ever be. As I told him, I didn’t even know what questions I would have until we were home and doing it on our own. So, we agreed to be released Tuesday afternoon and headed home. Cooper was so ready to get out of there, I didn’t think he could stand one more night anyway!

So, we’ve been home since Tuesday evening…checking BG with a finger prick first thing in the morning, before lunch, before dinner, and at least twice during the night. He gets a daily dose of a long-lasting insulin medication each morning, and then a separate medication after each meal that covers the amount of carbs he eats in a given meal or snack and takes into account his BG reading. Both of those medicines are administered by injection. All in all, Cooper gets stuck at least 9 or 10 times a day. That is hard to accept for all of us, but we’re getting better at it. He doesn’t fight the needles and usually wants to watch what’s happening. He doesn’t love it (who would!?) but he accepts it and recovers quickly.

We have called the doctor a few times with questions and they’ve been super helpful and accommodating. We have had SO much support and encouragement from friends and family, and even strangers. The staff at the hospital could not have been better teachers. We are overwhelmed and in shock and sad and learning, but we are coping. We’re doing it.

Lots more to come as we get used to this new normal.