I got back to the hospital just as rounds were ending for the day. Our schedule was full from 10am to 4pm with classes (except for an hour break for lunch). I told everyone not to come until after 4 because we had to pay attention in the classes in order for Carson to go home when he was ready.
I was happy to see that all but one of the IV's had been taken out of his arm and the heart monitor leads were off of his back too. The IV wasn't hooked up to anything, it was just in case they needed to give him fluids. His ketones were now trace and he was drinking raspberry ice crystal light.
He was very happy to see me and immediately came to me and wanted me to hold him. I scooped him up and held him close. He was finally starting to look like Carson again. His face was just a little puffy around his eyes, presumably from all of the fluids they had given him.
At 10 am our classes started. Each one lasting about (or less) than an hour. It went fairly easily and quick because we were already in the loop for most things because of Mike. They went over how to inject the insulin and how to figure up how much to give him for both what he was eating and also if he is high. The rules are fairly strict too. They change from day to night. The one good thing is that he can still eat whatever he wants - as long as we give him enough insulin to cover it.
We went over what "free" foods he could have anytime (pickles, MOST hot dogs, meat, pork rinds, cheese etc) and what foods we would have to give insulin for (carbs, sugar etc).
They went over how to use his glucose meter and set it up with us. We also went over what to do if Carson's sugar is so low that he is either unresponsive or seizing. That was really the only scary part. The reality. They prescribed us something called "Glucagon". It's basically an epi-pen for diabetics. Think Pulp Fiction when they stab the needle into Uma Thurman's chest. With this we stab it through his pants into his leg, turn him sideways quickly because he will throw-up and call 911.
Our social worker helped us sign up for a program that is here in Ohio called The Bureau for Children with Medical Handicaps or BCMH for short. This will basically be a secondary insurance plan for Carson. It is like Medicaid BUT it helps cover the costs associated with doctor visits and diabetic supplies. Plus she said it will also help cover up to a 5 day stay in the hospital, including the ICU. It was a relief because now that I am staying home full-time we only have about $80 extra a month and that was before we were going to have to pay about $150 a month for Carson's supplies. Poor Mike has been so worried about money. He has been saying that he is going to have to get a second job just to pay for everything.
I offered to get a weekend job but in reality it's not really possible. Sometimes Mike has to work on Saturdays and he is always on call so they may call him in on a Saturday and we don't have anyone who can watch Carson. Before it was easy because we could just take the kids to my mom's since she has been watching him since he was little he is comfortable with her and feels at home at her house. But now that he requires blood sugar checks and insulin injections we have no one who is capable to watch him.
When our classes were over I could tell that each of our 'teachers' seemed impressed with what we knew and how we were handling it. They told me that as long as his ketones were under control we would have a review in the am the next day (Saturday) and would be discharged afterwards. I was so happy.
Later that evening Amber and Amy showed up at the hospital to see Carson (and us too). When I showed them what he looked like before he started getting treatment they both cried. I don't blame them. It really was a shock to see how close to death he was. We talked about school and I broke the news that especially now Carson wasn't going to go to school full-time. She sadly told me she had already figured that. She told me that we need to talk to Jody to see if we would be able to have a teacher come to the house now that Carson is considered 'medically fragile' and they don't have a nurse on staff full-time at the school. She said they would have to hire one just for him. That's encouraging but I still know now that I 100% made the right decision to keep him home. It's funny how those things work out.
My dad showed up right as Mike was getting ready to leave for the night. It was his turn to go home and be with Baylee and all the animals. At shift change the new nurse Nicole brought Carson his dinner. She stayed and chatted with me for a few minutes. I found out that she has a son who has sensory issues as well. I asked her if it would be possible to have the last IV removed since it hadn't been used all day and it was now about 8 pm. She said she would ask.
Carson and I hung out for a bit and watched Look Who's Talking while lying in bed. When he fell asleep I changed his diaper and checked his ketones. Negative!! I went down the hall to the nurse's station to show Nicole. A few minutes later she was back in our room to take the IV out of his arm. That was when I knew that things were going to be okay. He was now free from all leads and IV's and I could breathe.
It was hard to sleep that night. I wrote my first post about what was going on then and tossed and turned when I did finally try to go to sleep. I got up about 7 the next morning and waited. I waited for Carson to wake up, for rounds to begin, for Mike to get there, for our review class and mostly to get the hell out of there. Knowing Carson, I knew that he would do so much better at home.
Mike arrived about 10:30 and the dietitian and registered nurse came in about 11 to start our review. It went very fast. They had a box of numbers which were blood sugar readings and started at 3pm and went through an entire day of 'what would you do?' with the numbers I pulled out of box. We passed with flying colors. They told me that most families were in the unit for 2-5 days just taking classes and trying to wrap their brains around all of the information. They crammed all of our classes into one day! I'm happy they felt so confident in our ability to take care of our baby boy.
Lunch came at noon and we fed Carson his last hospital meal for hopefully forever. They gave him his insulin after he ate and went over our discharge papers and we were off. It almost felt like a jailbreak as we made it to the parking garage with all of our loot (cookbook, books for Baylee, his meter, insulin, test strips, papers upon papers of information etc) and not to mention the most important-Carson.
We were lucky to have the support of our entire team while we were in the hospital. I couldn't imagine what it would be like to just be handed this diagnosis and expected to do it all ourselves. We now have the knowledge we need and the support of them as we go forward. Right before we left two of the endocrinologists stopped by our room to wish us well. They told us that they couldn't believe how well we had taken everything and how well we had retained what we were taught. I thanked them both and told them that although I was devastated and would probably freak out at some point down the road, I knew that it wasn't a terminal cancer diagnosis, it was manageable and I would freak out when I had the time.
It's taken me a while to write these posts from being so busy at home but I have to say I'm not mad or sad or anything anymore. Maybe a little overwhelmed, but who isn't? It is what it is and life goes on. Just now it's 3 hours at a time.
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