Day 1

Today it will take a good amount of makeup to cover the fact that I stood in the shower and cried for 10 minutes straight. Drained and broken is how I feel. My heart hurts for my child more than I’ve ever experienced. There is also no guarantee, now that the floodgates are open, that I won’t cry all day. It hit me at 6:15 this morning. The night shift nurse came in for the last time. She took Blaine’s blood pressure and then asked him which finger. He indicated his middle finger, then put his head down and quietly whispered “I hate this.” His blood sugar was back over 200. At 2:30 am I had the slightest moment of happiness and hope. When they checked his blood sugar then it was 114, in the normal range. A part of me thought: Thank goodness, we’re back to normal. Everything will be fine! In my near delusional state from lack of sleep I had forgotten that he had two shots before bed. One to counteract the carbs from his snack and another to serve as a long lasting background insulin. His pancreas is no longer doing its job. Which hit me full force this morning when I realized that because the insulin he received at 10:00 pm was wearing off, and his pancreas was no longer doing its job, his blood sugar was going back up. It was increasing like it will do for the rest of his life because his pancreas no longer works to move carbs through his body.

Yesterday Blaine was diagnosed with Type 1 diabetes. My coping words yesterday day were, “It is what it is, it will be what we make it”. They helped me get through yesterday. This morning, as I lay next to Blaine in the hospital bed, looking at his thin shoulders, and hearing the quiet resignation in his voice it hit me with such force that I had to run to the bathroom and turn on the shower. My words today that are repeating over and over in my head, “This sucks! Why my child? He is such a good kid, he doesn’t deserve this. It isn’t fair! It isn’t fair.”

Shortly after admission to the ER the endocrinologist met with us and told us quite simply, his diagnosis is confirmed, there is no cure, but the symptoms are manageable.  He went on to explain that there was nothing we could do to prevent this. It was something Blaine was born with and there was no way we could have known until now that he had it.  The doctor explained that most likely his pancreas was functioning at 85% as a baby or toddler and that with each year its functioning became less and less until we were finally to the point we are at now, where it is functioning at less than 10% and now placing a drain on his kidneys and other functions.

We knew coming back from Gainesville that there was a high probability that he would be diagnosed, but also some very strong hope that it would just be a middle ear infection or some virus. We really began noticing symptoms less than a week ago. February 28^th, a Thursday, Brent was at work when the school nurse called to say Blaine had a pretty bad headache. Brent convinced him to stay at school until noon and to call him back if his headache didn’t go away. His headache remained and Brent picked him up from school. When I got home from work that afternoon he seemed fine. He was in a good mood, playing basketball in the driveway.   That night we grilled out steaks and had a good bit of cookie cake for Brent’s birthday. The next day, Brent stayed home from work to enjoy some time off from work and to help get us ready to leave for a basketball game at UF.  For Blaine’s upcoming 10^th birthday I asked what he thought about going down to see the campus and watching a UF versus Alabama game.

Friday afternoon the school nurse called Brent again to say that Blaine had a headache. Lately he had seemed so tired, and had been asking for coffee. He was getting plenty of sleep at night and staying on top of his homework, but just seemed to drag a little lately, so we’d been letting him have what was left of the coffee, less than half a cup, in the mornings as it seemed to pick him up and help get him going. We began to think he was having caffeine withdrawals. Brent picked him up from school again.

Friday afternoon I had a meeting that went until about 4:30. It had been such a busy week that I hadn’t even packed up for our trip. It was 6:00 pm before we were able to get on the road. We dropped the dogs at Jennifer’s. We made a dinner stop at the drive-thru at Burger King. I can count on one hand the number of times we eat fast food in an entire year. Blaine was starving and ordered a Whooper, fries and chocolate milk shake. He ate all of it and an hour later complained of a hurt stomach, we assumed it was eating fast food, in a car, eating it too fast and having the dairy from the milkshake.  He requested to keep a bag in the back seat with him. We told him to loosen his seat belt.  Less than an hour later he vomited. 

At this point, Brent was frustrated and ready to turn the car around and go home.  Blaine begged to keep going to the game.  The car smelled like stomach acid. Aislin was complaining that she couldn’t breathe. I thought I’d be sick too. I tried to calm everyone down by stating that Blaine would likely feel better now and that we should keep going.  We stopped briefly at a gas station, and then continued on to Gainesville.  What was noticeable during the trip down was the fact that Blaine could not get enough to drink. We kept telling him to slow down with the water so that we wouldn’t throw up again. He was literally consuming water like his life depended on it. We now know that because his kidneys were furiously flushing away nutrients and water in his system, his brain was constantly sending him messages to drink more. He couldn’t get enough water.

Throughout the weekend the same pattern continued.  He’d drink a ton of liquid, retreat to the bathroom frequently and then get intense headaches.  He was so thirsty walking into the O’Connell center for the basketball game that he was in tears. Nearly 10 year-old boys don’t cry because they are thirsty, and certainly not Blaine. Past the age of three he rarely cried for anything, and definitely not because he wanted something to drink. I reassured him we’d get him something to drink as soon as we got in. Luckily there were no lines and I was able to immediately get him a bottle of water. 

We made it through the entire basketball game. He ate a hot dog and while lethargic, was smiling and watching the game each time that I glanced over at him. After the game, the plan was to walk around campus. Blaine complained of being cold. We convinced him it would be warmer in the sunshine. We started walking. We made it from the O’Connell center to Ben Hill Griffin stadium. He posed for some pictures, smiling and giving me the thumbs up. I kept thinking, he looks too thin.  We stopped to rest, then continued. We showed him the buildings where we took classes. Blaine said he didn’t think he could keep going.  We stopped and got a snack from a vending machine, with Blaine and I sitting to share a Kit-Kat bar, while Brent and Aislin shared some M&Ms.

We didn’t spend as much time on campus as we had anticipated and by 4:30 decided to call it quits and have an early dinner. I thought we needed take Blaine immediately to the Minute Clinic at CVS. Brent thought we should go ahead and eat before it got too crowded. I’m now glad that we decided not to go to the Minute Clinic. Had we gone, they most likely would have said he had a virus. At this point, I’m not sure we had put all the pieces together to give them the correct information.  Type 1 is so rare, 1 in 400, that I doubt they would have thought to look for it.  Instead we decided to have dinner at Outback.  Blaine ordered a steak and lobster tail. He seemed to feel better after eating.

That night I heard him get up and go to the restroom. Brent was right I thought, he is in there forever. Over a minute by my estimation, but then again, he has been drinking a ton of water.  The next morning I think both Brent and I knew something wasn’t right. We were both quiet on the way home. I was driving, and remember handing Brent my phone. I asked him to Google “excessive thirst, extreme headache and frequent urination.” The first thing to come up was Type 1 Diabetes.

We both thought, surely this is not it. Brent called my cousin Beth, a family practice physician. He didn’t tell her what we read on Google, but did tell her Blaine’s symptoms. She asked questions, he answered. I kept my eyes on the road and drove. Beth told Brent a few specific things to ask for in the morning. She suggested we have Blaine at the pediatrician’s office when it opened the next morning. I kept thinking, surely it is just a virus. Or, a middle ear infection as those can cause vomiting. That night neither Brent or I slept. I prayed all night that my son would be fine and the tests would come back normal.

That morning Blaine came walking down the stairs with sunken eyes. As he neared the bottom steps he fell. He slid down the last few steps and just sat there and cried. I wanted to cry too. Why was my healthy child looking so thin? Why was he falling down the steps? I came and sat next to him. I gently lifted his shirt to check his back. He had carpet burn, but otherwise seemed fine. I was so frustrated, and sad. For nearly two weeks he’d been asking me to tie his shoes in the morning. I thought it was odd, but I had just ordered him new shoes. Maybe these laces were different than the last, is what I thought. But, I knew they weren’t. I had order the exact same Reebox Flex shoes, just in the next size. I had also just ordered him new clothes, all in size 10 as he was about to turn 10. All of the new clothes just hung on him, they didn’t look right either.

Once the kids were ready I headed to work. We thought if Blaine was sick then I should at least get in half a day of work and then Brent could go in. I had just started the first of three meetings for the morning. Brent called just as we were starting to talk. I had my phone next to me and had already let everyone know that I was expecting a call.  I took his call and stepped away. I asked how the appointment went. What I didn’t expect was for Brent to tell me that the pediatrician did a quick blood test and then told Brent that he needed to go home, pack a bag and check into the ER within the next hour. I immediately left work to meet them at home.  Our suitcases were still on the floor from our weekend trip. I refreshed our bags. I remember once back in the car I called work to let them know that I’d be out for a few days. I can’t remember if I made the other calls or if Brent did. But, one of us called to make arrangements for Aislin to go home with Tres and Tina and for my sister to take care of our dogs. I’m sure one of us called all parents as well, but I don’t remember that either. I must have sent a text to Jackie and Robyn, because Robyn called me as I was driving to the hospital.

The one thing I do clearly remember is that the ER had several families there, and that we were the only people walking in with a rolling suitcase. I remember that we checked in and sat down. We were the last ones in and the first ones called back. It seemed as if they were waiting on Blaine. The pediatrician had called ahead. We had barely sat down before they called Blaine back. I began to feel nervous at that point.

I remember more questions, height and weight measurements, and numbing cream for the impeding IVs lines. Blaine, like me, hates needles. I believe I somehow gave him my needle-phobia. Prior to 3/4/13 I knew the only thing I knew about diabetes was that it involved insulin injections via needles. I didn’t really know the difference between Type 1 and Type 2 or why or how people got diabetes. But I did know that Blaine’s life was about to have a lot of needles in it…

The 10 minutes in the shower was the only time I allowed myself to feel sorry for our situation. I needed to stay focused. Starting at 9:30 am we would have class that went all day so that we could begin learning how to care for our child.