True's Truth: Hospital Days

September 13-16th

I couldn’t sleep that first night in the hospital. The chair that opened up into a magical bed was surprisingly comfortable but I couldn’t fall asleep. My head was buzzing with anticipation of what would happen the next day. True was sleeping soundly, or as soundly as one can sleep with an IV hooked up to one’s arm, and having a nurse come in and poke your finger to check your blood sugar multiple times, and waking to use the bathroom multiple times. I barely would fall into a light doze when the nurse would come in and I would startle into an alarmed state of alertness thinking something was wrong and she would smile and say, “It’s just me” as I jolted upright. I’d smile and nod and she would say, “You poor thing, you wake up every time I come in the room.” I would say, “That’s okay,” as I wasn’t really sleeping anyway. My head was too full of worry for sleep. At 5am some light started to enter the big window. I climbed from my chair-bed and gazed out and realized it was raining. Such a grey, bland morning. I also realized that we had a beautiful view of the river running through Ann Arbor that we hadn’t been able to see in the dark of night. I stretched out and waiting for the sun, that wouldn’t really show itself.

While True slept I decided it was a good time to sneak out of the room and try that coffee from the nutrition station room that the host had so kindly shown me. I walked down the brightly lit hall. It was eerily quiet. I went in and there was thankfully a fresh pot. I poured myself a stryrofoam cup full. It was pretty awful coffee, but it was warm, and fresh and thus welcome to my tastebuds on a dark, damp morning. I went back to room 11 to wait for Todd and wait for our very active day to start.

At 6am the lab tech came to do a blood draw, which woke True up. He couldn’t fall back to sleep after that. I helped him up and helped him to the bathroom. I was so relieved when Todd finally got there at 8:00, grateful for company. I had Todd bring me my coffee tumbler from home and filled that sucker up, prepared for a full day. We ordered True breakfast. We were now on a regime of 75 grams of carbs and a set dose of insulin. We had to calculate out just how much he could eat, and actually we had to give him a bit more to eat then he usually has. He had a nice breakfast of pancakes with butter, no syrup, just like he likes it and a side of bacon and some chocolate milk. He said the food was “amazing”. To this day he will say that was the best part of the hospital. Go figure.

The dietitian team was the first group of people we met – they were there bright and early at 9am. Three of them! A dietitian and two students. They gave us an hour long talk on reading nutrition labels and counting carbs. None of it was news to us and poor True was bored senseless. All he wanted to do was turn back on the television. I could hardly get him to pay attention. They gave us a big folder full of information, a booklet on food nutrition info and then a book on fast food nutrition info so that we can count carbs while eating out. True was relieved when they were finally gone, and admittedly, we were a bit too. Perhaps some people don’t know how to read nutrition labels or count carbs, but we aren’t those people.

True had a little time to relax, but not much. Next came the children’s diabetes social worker. She was very helpful. She explained a lot to us and told us how things would work with school and talked to us about insurance issues and emotional issues and how the clinic worked and she was just really helpful. We all instantly liked her. She talked to us for about an hour and then it was time for lunch and another round of blood sugar testing and more insulin.

After that the endocrinology doctors came in to meet us. They taught us about what diabetes were and how insulin worked. They talked to us for about a half hour or so and they were actually very helpful but they came around lunch time and all True wanted to do was eat.

The day was busy, with many blood sugar checks, insulin injections, doctor visits (residents, attendings, etc.) and the dietitians. We also started learning to give True injections and he started learning to give them to himself. We started practicing on a nectarine, and I was actually the first one to give True a shot and it was easier than I thought. True never winced or complained the whole time about the pain except for saying that the blood sugar testing did hurt a little. There was one moment when Todd was gone at the cafeteria that True had a slight meltdown and was in tears saying he was sick of the pokes and shots and he didn’t want to do it anymore. I didn’t know what to say except that I understood. At that moment the nurse came in to give him his insulin. I gave him a hug, told him we’d get through this. He wiped away his tears, took the needle, and injected himself right in his belly. And that was the end of his tears.

We were also busy fielding phone calls from family and friends and the school and even our Rabbis. We were grateful for all the support. In the evening Todd went home and got Tag and brought him back to visit. The boys played around with the gaming system until about 9:30 and then left for the night. This time I wanted True to get some sleep and get to bed at a decent hour. There was no way I was letting him stay up late again and I was exhausted.

By 11:00 we shut everything down and I turned that magical chair into a bed again, put the sheets on it and changed into a hoodie and crawled into bed and this time, I fell almost instantly into sleep and stayed that way until nearly 6am when I heard the nurse come in. I sat up and she said hello and I told her I couldn’t believe I slept this time. She said she was so glad I did, and she told me that True didn’t even wake up when she tested his blood sugar. We were both exhausted. I let True sleep, and this time there was no lab tech to wake him up. The endocrinologist said she’d be back early so I asked Todd to be back at 7:30 so I patiently waited for him. I once again filled my tumbler full of that awful but suitable coffee and waited for another busy day to start.

We saw the resident early and she said if we got True set on learning to do his own injections and blood sugar testing we could go home that day. We were given a “Bag of Hope” from the JDRF with a glucose monitor, a video, a book about diabetes, a carb counting book and tons of literature about diabetes and a teddy bear (named Rufus!) that all kids with diabetes get and we got a huge bag from the pharmacy with all the starter supplies we’d need. The nurse helped us practice so we’d be ready to be on our own. True even practiced giving an injection into his Dad! By this third day we were sick of the hospital and it was a beautiful Saturday and we were all tired and ready to go home so we definitely wanted to prove ourselves and get out of there. We met with the endocrinologists again and that went well. We made sure we knew what we were doing, and we saw all the doctors and True’s labs were all good so by late Saturday afternoon we were given the go-ahead to get out of there. Grandpa and Grandma came to visit True around discharge time which was great as they were a welcome distraction while he was getting his IV out and while Todd and I were busy getting the lengthy discharge instructions.

We left with not only our own big bags but now a backpack full of supplies and two grocery size bags full of diabetic supplies. Monitors, test strips, keytone strips, alcohol wipes, syringes/needles and two kinds of insulin.

Three days after walking into the hospital, confused and frightened, we walked out, confused and frightened. We were certainly afraid of the task that lay ahead. For three days we had medical staff watching over us making sure that True’s blood sugar was stable and making sure he was okay, and now it was all up to us. The endocrinologist was going to be calling us the next day to check on us, and we had an appointment in the clinic in two weeks, and we were scheduled for two three-hour diabetes education classes one in each of the next two weeks. And the nurse practitioner would be calling us every day until we got True’s “carb ratio” and “correction factor” at the clinic appointment. So we weren’t totally abandoned. We had emergency numbers to call in case there were any problems. During the long hospital days I had read the 145 page “First Book of Understanding Diabetes” that was in our free backpack so I had a beginning grasp of what we were doing and the doctors and nurses had prepared us well. Still, it was scary.

But we were as ready – or at least as ready as we were going to be. Now came the real challenge. We were on our own.