The last 3 days have been torture. Soliz has been unable to calm himself; no drugs have been able to sooth his agitation. We were discharged from St. Joseph's Hospital on Friday afternoon (and Camila left Ryan House). Friday night Soliz was agitated, the drugs (Tylenol with Hydrocone and Valium) he had been sent home on were not even touching him. Finally at 4am I called the Neurosurgeon on-call (I had called on Friday when we got home but was unable to get a hold of him). He advised us to take Soliz to the ER for pain management. We chose to go to Phoenix Children's Hospital rather than back to St. Joe's. When we got to the ER they gave him a dose of Fentynol. Soliz just became more agitated. Pain Service came and discussed the options with us. They started him on Toradol, Valium, Oxycodone and Morphine. This combination of drugs seemed to finally calm Soliz. Even though he was seriously drugged up, he was having bouts of agitation throughout the day. Finally by the end of the day he was able to calm a bit.
Andre's mom arrived from Cali last night so once Soliz was asleep for the night Andre and I were able to go home and get a good nights sleep--and spend a bit of much needed time with Cams. But at 6 am we got phone call saying that Soliz had woken up agitated. I quickly got myself to the hospital to find Soliz in the same state he had been on Friday night. He was given Atavan, Oxycodone, etc. but again nothing was helping with his agitation.
During rounds the Doctor suggested that Soliz was going through withdrawals from the drip medication (Dexmedetomidine) Soliz got post-surgery. Apparently this is a new drug that they are using for pain control that doctors have believed has no side effects. Well they are learning that this is not true and that sometimes when kids come off of this drug they go through withdrawals-agitation being one of the key symptoms. So now the focus is on how to relieve Soliz of these withdrawal symptoms rather than the pain. The Pain Team decided to give Soliz Clonidine, which is in the same grouping as Dexmedetomidine, in order to help Soliz relax. First he got an IV dose and then a patch on his arm. The Clonidine worked. And he has been fairly calm and asleep ever since. This is a guessing game especially because Soliz can not verbally tell us what he is experiencing. For this reason it is good to be at PCH where they specialize in caring for kids.
At this moment I am slightly relieved that Soliz is calmed by the medicine but there is still this part of me that feels anxious. To have my little boy so agitated that I can not calm him or so doped up that I can not rouse him. I am not sure which is worse.