A PAINFUL DAY

Jacob went into surgery today. We were at the hospital at 7 am to check him in, and at 9 am it was time. The plan for the day was an open liver and muscle biopsy as well as botox of his salivary gland.
At 11:30 am, we got to see him in the recovery room. Due to Jacob not waking up for 16 hours after his last surgery, the anaesthesiologist decided to give him minimal anaesthesia and only fentanyl for pain. Jacob was definitely in catch up mode by the time we saw him in the recovery room. He was in severe pain and distress. It broke my heart to see him suffering, since we know what a high tolerance level of pain Jacob has. There was no doubt about the pain today.
We got transferred to a regular room this afternoon, but I am really questioning if it was the right decision. We have had the charge nurse on the floor and charge nurse of the OR debating if it was the right decision to have him come up here or not. The OR doctor has been up every hour due to Jacob's pain not being under control. Orders for morphine are being written over and over again. For a while they also didn't want to give any pain medication due to Jacob having a too low blood pressure. We have since then seen heart rates in the 190s, and oxygen levels dropping to mid 80s. His movements are also pretty extreme. It all looks like ICU attention to me, but apparently not to the team here. I feel that it all got political due to OR giving the go ahead to transfer him to a regular floor. At the same time, I do hope we're slowly seing an improvement, and hopefully some relief of pain and discomfort.
The botox apparently seems to be working. I can already see a difference when it comes to Jacob's saliva, so that's a positive sign. We won't see the full effect for another 3-4 days though.
Sarah is home with my cousin Petra who arrived on Tuesday evening. She took Sarah to school and picked her up, and will take her to dance class tonight. That is definitely a relief. It's also very nice to catch up again. We haven't seen each other for 1,5 year, so lots have happened on both sides.
We were supposed to stay overnight for observation. Now, I am not so sure we will simply be released tomorrow morning. Jacob is still on morphine through his medical port. One day at a time. We know the drill.
Jacob visited his school yesterday. We met with his new teachers, school nurse, and therapists to go over his medical history and specifically his seizure plan. It was great, and I left with a good feeling for the new school year. It was a great plus to also see his old teachers Mrs. K and Mrs. Julie. They will always stay special in our hearts. On Tuesday, school starts again, so we have a few days to get Jacob's pain under control.
Send Jacob positive thoughts that he can settle into sleep eventually, and get some relief from his pain. Deep in my heart, I also truly hope that something will come out of the biopsies, so we didn't do them in vain. It would just be a pretty terrible feeling.
Love, Maria.