One Month Post Op Update

One month ago today MJ was being transferred from ICU to a neuro-care room after his brain surgery. It seems like just yesterday Dan and I were tag teaming going back and forth to the hospital each night. When I look back at my blogs from those days/weeks it is amazing to see how God carried us through. Though the first few days were scary and challenging - God has given us small victories to get us through to the next day/week.

The first week at home was extremely challenging. MJ was in a lot of pain day and night. He had a lot of nausea and vomiting, and no energy. We encouraged him to walk when he could to build strength but he was extremely unsteady due to the brain swelling (the location of his surgery in the cerebellum controls balance and coordination). The hospital sent us home with a walker so he could gain strength and confidence with his new balance. We had one day at home (day 2 at home) where MJ felt pretty good and was even able to sit outside to get some fresh air. Unfortunately the pain came back fierce and the rest of the week was a challenge. This was the point the neurosurgeon told us the next month could be very unpredictable and pretty much a roller coaster through the brain swelling and healing process. Our days and nights were spent trying to be pro-active in staying ahead of his pain by alternating meds (a challenge in itself when you have a child who has color/flavor/texture aversions to anything that goes in his mouth).

By week 2 we noticed a definite pattern with his pain which made things much more manageable. Pretty much he woke up with pain, and started getting pain early evenings every day. This allowed him to be able to gain a bit of endurance during the day when the pain was low/tolerable. Although he had periodic setbacks, he was able to gain enough strength and confidence in his mobility that he was able to finally walk around at home without needing the walker!

Week 3 and 4 MJ has been improving a bit each day. His endurance has built up nicely and his pain is periodic and manageable. We now know what triggers his pain and are teaching MJ what to avoid and how to be careful. He cannot move his neck in certain positions or over-exert himself because that will bring on pain. His incision is losing some sutures that came to the surface and looks absolutely beautiful.

Today was his first day back at his special needs preschool. Having him out in the “real world” away from where we can protect him all of the time still makes me nervous. Because of his surgery and the current state of his spine being compromised due to the Syringomyelia (cysts on his cervical and thoracic spine-post coming soon) he is at an increased risk for brain and spinal cord injury. Pretty much if he takes a fall where he hits his head wrong or jars his back he could end up with permanent neurological damage. MJ still has a long road ahead since this is a lifelong condition and he is not out of the woods yet.

For now we are counting our blessing that he has come through this surgery so beautifully and are praying that we will see positive results at his post-op MRI in May.

As always - your prayers and continued support are completely amazing. Thank you from the bottom of our hearts.