Surgery Day (#9 overall, 4th hand)

As they all are, today has been a long tiresome day. It started out great with Jake sleeping late, bonus to still be on LA time, giggling and playing in bed. Off to his pre-op at 10:30 to which everything checked out and the waiting game started till his scheduled surgery time of 12:30. Some friends of ours from the Apert group on Facebook whom we hadn't met in person dropped by for a visit. It was great to meet them and their son who is a couple years younger than Jake. We always say for all the negativity facebook gets, the group we share is a great source of information and support for all of us dealing with children who have this syndrome. It also helped pass the time which is a bonus on surgery day. Aunt Stacey joined us as well and Jake was happy to see her, playing games in the lounge with her. Soon it was time to head upstairs and the memory from a month ago triggered some crying. Jake seemed to realize what it all meant. The anesthesiologist showing up with a flavored mask didn't help and that brought more tears. Dr. Upton came to discuss the procedure with us but Jake was sad and crying so much we couldn't get a final photo of Jake and his Dr. The positive was seeing the Dr.'s reaction to his thumb and the pronouncement that the thumb looked great and at least the past month was worth it. Jake in the OR was tough, he was crying really hard and it was the worst it has been out of any of his surgeries. Luckily, he fell asleep in 15 seconds and Jake was left in the hands of his surgical team. The waiting game began and four hours later we received a visit from Dr. Upton. He indicated there had been a puzzling development as Jake broke out with a rash all over his body. None of the medication has changed from previous surgeries so the allergic reaction was a surprise development. To be safe, they were going to send Jake to the ICU to monitor the reaction and make sure his breathing is under control. In regard to the surgical procedure, the Dr. was pleased and basically they took a piece of bone from his hip which is now being held together by a pin for about five weeks. This procedure should really help Jake's hand function which makes this all worth it in the end. Some interesting news, the Dr. thinks we can wait to do the same procedure on his left hand. We will see but that may buy us some much needed time from the OR. Seeing Jake in the ICU was extremely difficult as his entire face was swollen and he looks like a different person. He also has a red rash over his entire body. The allergists will review everything tomorrow but for the time being no one really knows why. For us, we are concerned about other items giving him more agitation and irritance. Jake is definitely agitated and uncomfortable so we hope the right combo of medicine can help him cure the allergic reaction and heal his surgical wounds. Hopefully, Jake will rest tonight and we can leave the ICU in the am.