So my 12 year-old son, of whom I’ve spoken here often, went last week for a routine CT scan of his head. He was born with a Chiari Malformation Type II, which essentially means that his cerebellum (base of the brain) goes too far down into his neck, to the C2 level. This has caused many complications for him- when he was between 6 and 9 months old, it impeded his cerebral spinal fluid and his head got quite large. He didn’t develop hydrocephalus because the ventricles enlarged to compensate, thank og, but nevertheless it did cause him to be delayed in his gross and fine motor skills. At 18 months, he had a surgery to remodel his skull, so that his cerebellum was no longer being pressed on and the fluid could flow freely. Since the first surgery, things have been going relatively smoothly. He caught up with his gross motor skills, he’s still working on the fine motors and gets therapy for that, and otherwise he’s been very healthy and normal.
Or so we thought. The latest CT scan shows that his cerebellum is being impinged on again, which does explain his recent spate of headaches, and he is being scheduled for surgery next week at the Barrows Institute in Phoenix, where he had his first skull surgery. I’m very confident, as his doctor and Barrows are both world-renowned for their expertise and successes with this.
Last time, I and a couple other family members went to Phoenix with him, stayed at the Ronald McDonald house, and I was able to spend most of the week that he was there right beside his crib-bed, holding his hand. I still remember how his whole little face and head swelled up and how scared I was that he was in pain but couldn’t express it- but I guess they did have him on some pretty heavy pain meds since he doesn’t remember anything about it now.
This time, however, I’m not going to be able to be with him. I’ve tried and tried to make it so, but I just started a new job 2 months ago, and while my employer is understanding and willing to give me the time off, I’m not eligible to be paid for it. I just keep coming back to the fact that if I don’t work, I don’t get paid, and therefore we get evicted, car repossessed, etc. My mother and aunt will be there with him, and he understands why I can’t be there with him the whole time- I will be there the day of the surgery, but have to go back to work the next day. I’m sad about it, but I’ve accepted that this is the way it is, and just trying to focus on him and his fears, which mostly include being in pain afterwards, and being away from home for ~10 days.
Any words of encouragement for me or him would be greatly appreciated!