Recovery-The Day After

Jake had a rough night leaving mom sleepless for most. His discomfort continued in the morning when I took over the shift. Jake had some pretty violent pain episodes leaving him to cry and kick and wave his arms hard to do when they are all casted. The morphine is administered by a machine that locks the dosage and time intervals so once it hits a certain point its hard to catch up with the pain control. One outburst was so forceful that Jake actually kicked his cast off his foot. Yes He kicked his leg up and bam there flew the cast. The Dr.'s could not believe he was able to do that. They obviously underestimated our Jake. Anyway, I began working on them to not replace the cast and hoped we could settle for just bandaging it. This worked so his right foot is now wrapped in a bandage with the left still in the cast. I am working on the staff to have them take off the left cast as the bandage approach looks much lighter and easier on Jake. They have relented yet but they may underestimate my persistence.

After a little while the dr.'s and nurses agreed to let jake combine Valium doses with his morphine. This helped get the pain under wraps and for a little while and it appeared that Jake forgot where he was. He looked over for the first time and we saw life in his eyes versus the drugged stupor and he looked up and smiled and was happy. This usually takes till Sunday to happen so I was very excited that Jake was back. But then he realized where he was and he started to cry and grow restless again. Instinct dictated that he wanted to be held and thats what happened for the next few hours. Jake never slept better and it calmed him greatly. By 12ish, they informed us that he could move out of the ICU and down to the regular floor. A great sign for Jake and it was nice to leave the ICU. Once in the regular room we hung out with Jake in our arms for most of the day as he really responded well and has taken less medicine over the last 12 hours than expected. He likes the comfort of his parents arms and we're happy to give our lil boy what he needs. We ran into Joyelle the girl we mentioned running into a few days ago who also has apert. We chatted with her family throughout the day and Jake even visited his new friend as we took him for a stroll around the floor. Overall, Jake is doing well considering his pain level and seems most happy in our arms. Hopefully tonight will be ok back in his bed and Sam can sleep some.
For those parents out there, we can't tell you how hard it is to watch your child go through this ordeal and of course with us its been multiple times already. Each time he amazes us as we see him battle through it all and persevere. Jake is a hero of ours and we are in awe of him as we watch his courage and strength.
Kiss your loved ones.
More tomorrow
L&S