As we enter day 10 post-op Jailum continues to make progress each day. We are still in the ICU and are hoping to be transferred to the ward within the next couple of days.
Post surgery we were informed by the neuro team that they found the AVM to be wrapped around the brainstem. This resulted in a more challenging surgery and has led to a much slower recovery. We’re counting our blessings that the that the AVM was identified last month as the way it was positioned it was only a matter of time before it ruptured.
The two primary issues we’ve been dealing with over the last week has been respiratory function and ataxia (muscle control).
From a respiratory perspective, Jailum was on a BPAP for most of the week as he was not able to fully breathe on his own. The good news is that he has gained strength over the last few days and has been fully off the BPAP since Thursday. His biggest hurdle moving forward will be regaining his ability to swallow and manage his secretions. We’re not sure how long this will take, however; based on his progress over the last few days we’re optimistic that he will be able to regain full respiratory function.
From a muscle control standpoint, Jailum is experiencing more weakness than anticipated. He is receiving daily rehab and on Thursday we were able to get him out of bed and into a wheelchair. Being able to stroll around the hospital and go to the play room has been a great motivator for Jailum to get out of bed. Although he is currently unable to stand or walk on his own we’re optimistic that he’ll recover to where he was prior to this latest surgery.
Looking forward once we are in the ward we expect to be there for about a week. After that he’ll be transferred to Santa Clara hospital for intense in-house rehab. Depending on how he progresses we’re anticipating about a week of rehab before he would be able to come home.
Lastly, thanks to everyone for their continued prayers and well wishes. Jailum really enjoys reading all of the messages and cards. If you have a message for him we'll be sure to pass it along.