Last night Cole was very uncomfortable and didn’t sleep well at all. The first night home and he slept less than 1 hour. It’s kind of like being a detective when it comes to medically fragile children and trying to figure out what happened, why happened and how to fix it.
When we gave Cole his first dose of valium (helps with muscle spasms), 1ml @ 6:30pm Sunday night, he threw up minutes later. Yes, when I write it the way I just did it makes it seem easy that throwing up was caused by the valium. However, this was the first night with the brace and he just finished eating. Also 1ml is an extremely small dose. Years ago Cole had a TLSO brace and threw up all the time due to restricted breathing. So my mind went right to him throwing up due to the brace.
Cole’s nurse said he was uncomfortable, wanted to be rolled, moved, and bagged most of the night. Sleep is extremely important to Cole healing and the fact that he can’t get sleep is concerning. As a Mother, it’s important to control the pain and understand the difference between a spasm and pain with a nonverbal child. All while balancing these narcotics to ensure you dont give too much and you don’t cause addiction by giving it unnecessarily, requiring weening later.
When Cole woke up Monday, he was in good spirits and happy to see his day nurse. However, he didn’t want to get out of bed or do anything besides stay in his room laying down. One time we got him up to take a few steps, with much assistance. Mark and I decided, we needed to be much more diligent tomorrow with getting him up and moving. As hard as it is to see your child in pain, getting up and moving will be the only thing that gets them making progress after a procedure like this.
Monday night we proactively gave Cole valium to ensure he would sleep well. He threw up less than 2min after and he didn’t just finish a feed and he had not throw up at all during the day and he was wearing the brace all day. We call this process of elimination. Clearly, to us the vomiting was caused by valium. We did not have a nurse and so we went to bed, attempting to sleep in our own room and just get up when Cole’s alarms go off. That lasted approximately 35min before I got sick of getting up every 2min or so. I climbed in bed with Cole and every few minutes he would take his vent off to cause an alarm to get what he needed. He’s very smart and has been doing this for years. If he needs something, he knows taking the vent off will do the trick. The hospital hates it and it causes a ton of people to run in his room and try to fix something that is not broken. Sometimes he wanted water, most times it was to roll over, get pushed up more on the pillow because he had slid down, or to tell me he wanted his brace off. In a desperate effort to get some sleep for both of us, I gave Cole oxycontin (for pain). That did nothing and as a Mom, when you give your child a narcotic and it doesn’t help, you feel terrible. See, when Cole was in the NICU he was always sedated, he had a narcotic drip of fentanyl, oxycodone, etc. Maybe it’s that experience, but we try our best to give Cole the least amount of medicine as possible. At 3am Mark came in and switched spots with me and laid with Cole. Overall, Cole (once again) got very little sleep. Fingers crossed tomorrow will be better!