About 3 pm Carson was moved from the PICU to the endocrinology/diabetes floor of the hospital. Once we were settled we met our care team; a pediatric endocrinologist, a fellow, a resident, a CNP, a registered nurse, a registered nurse educator, a registered dietitian educator, a social worker, a certified diabetes educator and a child life specialist. All of those people in one room at one time is very overwhelming.
They explained to us that Carson was still very sick and not out of the woods. By this time his blood sugar levels were about half of what they were when he was admitted to the hospital (so about 500) and they had to bring them down slowly so he wouldn't have a seizure or other complication. We would begin classes in the morning to learn how to take care of him at home but he would need to be stable before they could even consider letting him leave. While he looked better, he didn't look great. To be honest, he didn't look like my son. His face had changed, I'm assuming from all of the fluids they had him on.
Each person on our team was responsible for a certain area of our care. I say our because by this point we all needed help. The social worker was the first to talk to us that night. When she asked us how we were doing I burst into tears. By this point I had held it in for about 24 hours and I couldn't even get one word out before I broke down. It was hard not to be mad, sad, angry, and most importantly scared. I just couldn't understand how my sweet little guy who had already been through so much could be handed this too. What did he ever do to deserve this? Now not only could he not talk or walk for very long, or see straight without turning his head to align his eyes, or hear out of one ear or even 100% in the other or comprehend a lot of the world around him and be so sensitive to light and sound and other outside stimuli NOW he has to get this?? NOW he has to have his fingers pricked all the time and suck with needles every day MULTIPLE times??? WHY??? JUST WHY??? I just feel like I'm mourning an innocence lost.
Of course she was great with us. She tried to console Mike and reassure him that him having diabetes had NOTHING to do with Carson getting it. She said it was going to happen anyway. Why now? No one knows. This was just the time his pancreas decided it would stop producing insulin to break down the carbohydrates in his food to make sugar for his brain and body. And she told me that everything that I was feeling was what every parent goes through. What kind of parent would I be if I wasn't upset? I saw her point but I still felt pretty stupid breaking down in front of her the way that I did.
When she left they brought lunch in for Carson to try to get him to eat (at 5 pm). I had ordered chicken, pudding and milk. The idea was to get him to eat as many carbs as he could in 30 minutes and then they would figure the correct dosage of insulin and give it to him. Since he hadn't eaten in days he really didn't care about food or drinking for that matter.
They told us he had to drink 2 oz an hour for 8 hours to try to get the ketones (Normal ketones level in urine is negative. Measuring range is about 0 to 160 mg/dl. Ketones levels in urine are developed in your body when fats, instead of glucose are utilized to produce energy. It is an acid so that it may be harmful to your body when ketones are granted to accumulate. Abnormal ketones assesses may indicative of insulin overdose, nausea and vomiting, strict dieting, severe fever due to infection, diabetic ketoacidosis, insufficient food intake, severe stress, starvation. When acetoacetic acid responds with nitroprusside, color change develops, covering up the range from negative to positive. The test doesn’t react with B-hydroxybutyrate or acetone. Urine sample of high specific gravity and low pH and other substances bearing sulfhydryl groups occasionally afford reactions equal to, and admitting trace (+). Sensitivity is 0.5 mmol/l acetoacetic acid. Active reagent is nitroprusside (7.5% w/w). )
Mike and I decided that he would stay with Carson for the night and I should go home and take care of Baylee. We were trying to balance time between the two so that she wouldn't feel like Carson was more important to us than her. My step-mom Donna and my little sister Montana came to the hospital to see Carson for a bit but he slept the whole time they were there. My dad showed up right as I was getting ready to leave so I only got to see him for a few minutes but he decided to stay with Mike for a while since visiting hours were still going. I kissed my sleeping boy on the head and tried to keep it together as I walked out of the door. Donna and Montana walked with me to the parking garage I guess just to make sure I didn't collapse in the hallways.
I made it the hour drive to my mom's house to get Ms. B, but when I got there she decided that she'd rather spend the night since I would just have to drop her back off there in about 10 hours since I had training in the morning. I was sad but she was right. I stayed for about a half an hour and then made my way home. The drive seemed forever even though it was really only about 10 minutes.
The house seemed so empty when I got there. Of course I had our menagerie of animals but it was so cold without other bodies in the house. I took a shower and tried to eat something-which was pointless. My stomach was too upset. I sat on the couch by the fire and tried to process the last 24 hours. My son was sick. My son was VERY sick. My son almost died. I went into his room and sat down on his bed. I looked at his toys and his trains on the wall. I could smell his scent on his bed. It felt so empty and wrong for him not to be there. That's when it REALLY hit me. I almost lost him. Had we waited until morning he probably wouldn't have made it. The knot in my stomach was almost too much to bear. That's when I lost it. I cried and sobbed and cried some more. I cried until I literally didn't have energy left to cry anymore.
Mike texted me and told me that he was awake and drinking. He was getting ready to feed him dinner. He said his ketone levels went from moderate to small which is a good sign that his body was healing.
I went to bed and tried to answer all the texts that I had gotten but fell asleep long before I could look at every one of them. It felt like I blinked and my alarm was going off.
More later.
XX
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