Well, tomorrow marks two weeks since we checked out of CHLA so we thought it was a good time to catch everyone up. Jake had been doing great during his first week home getting better each day but then things got interesting. On Monday the 22nd, it was time to change his clonidine patch. By mid-day, Jake was feeling lethargic, lacking energy, and complaining of knee pain. We contacted his doctor and it was back to CHLA to check him out. It was very confusing to us as Jake had been doing so great so immediately the patch came to mind. We discussed with the doctors and they wanted to monitor him as his heart rate had dipped to an extremely low rate. The patch was removed immediately and before we knew it they had to check Jake back into the hospital to keep him monitored and wait out the half life of the medicine that had circulated through his body already. UGH, it was seemingly a known factor that the patch had caused this sudden change in Jake but we had to make sure. We spend all night in the hospital but then Jake's heart rate increased back to normal and we discharged once again Tuesday morning. Coincidentally, Tuesday also marked the day Jake had his first post-op checkup with his surgeon. Good news, Jake was back to acting like himself again so it was clear the patch had an adverse affect on him leaving us with no other worries about his condition.
Dr. Urata was extremely pleased with Jake's level of swelling, wound healing and how Jake looked overall. I could tell he was examining Jake but with an admiration towards the results achieved by the surgery. We did review the concern about Jake's eye muscle and the doctor did acknowledge that when moving the eyes some muscles could be attached to the socket so there could be a chance something was disrupted. He did remind us that we won't even truly tell Jake's new look for 6 months as that will be the point where there will be no more swelling. At that point, we can reassess and see the status of his eye. Beyond the one concern, Jake looks and feels great and it is a huge relief to put the worst behind us and move toward full recovery with each day. It does appear the surgery was such a success that Jake won't need another major surgery perhaps till he's 19. What a relief, heading into the surgery we thought maybe next year so we will gladly take a 10 year breather. If an eye muscle surgery is needed, it is much more minor and an outpatient item. So for everything we have been through that almost doesn't count.
We have a follow up for end of Sept. but Jake has been doing great and it feels great to watch him get stronger with each passing day.
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