One Year Since Brain Injury
It's hard to believe it's been one year. 12 months. 52 weeks. 365 days. Since life got turned upside down. Once again.
On this day last year, we learned one of Ian's tumor doubled in size. Something that had never happened previously. You can't tell what's inside a tumor from an MRI. Was it blood? Was it dead tissue? Neither sounded good. We would meet with neurosurgery the very next morning to establish the next course of action.
The tumor that hemorrhaged was located in between Ian’s ventricles. So, when it had started to grow, the MRI showed that his ventricles were enlarged, indicating pressure was being put on them. When this happens, people are at risk for hydrocephalus, which is when your cerebral spinal fluid has nowhere to go, so it starts to build up, putting pressure on your brain, which can have detrimental effects if left untreated. At the time of speaking to the neurosurgeon, Ian had not experienced any symptoms of hydrocephalus at that point, so the thought was that it had enough space somewhere to get through, and he, at that point, wasn’t considered an emergency, so we had to schedule the procedure for 2 weeks later. However, they told us if he began experiencing headaches that got worse followed by vomiting to bring him right down. Unknowing to us, we wouldn't make it to execute that plan, and we would be back down at the hospital later that very same night.
I tried to be calm initially. It was still scary, I still called immediate family members, and I was still crying and worried. But I felt like we knew what this was. We had a plan. We had JUST talked about it that morning. We knew what to expect, it was just a small hole being poked in the tumor to relieve the pressure and some pieces of it for a second biopsy. We could get through this. But after we talked to the ER doctor, and after he looked Ian over, he said something didn’t seem right… this seemed like it happened top fast. After all, Ian hadn’t had any symptoms that morning. And this was something that was supposed to happen gradually. So even though he just had an MRI the day before, a stat CT scan was ordered. And thank goodness, because as we know now, Ian’s tumor was bleeding into his brain, causing pressure and buildup. I’ll never be able to thank that doctor enough for recognizing that something more was happening and taking quick action.
That, along with a ton of other little moments, are the reason Ian is alive today. If one thing had gone differently, if one thing had delayed him getting the care he needed, this all could have been so much worse.
I'm sad that Ian will probably never be exactly how he was before the brain injury. But I'm grateful for how far he has come in his recovery. When Ian came out of the coma, he had to relearn everything. How to walk, how to talk, how to chew, how to swallow. Now he’s mobile (not great, but he can get himself around to the point we stopped using his wheelchair), his speech is back to baseline, and the biggest worry with eating right now is shoveling food in his food mouth. But we’ll take it. We’ll definetely take it.
I'm grateful for the pieces of him that are starting to come back. (Even him telling me "no" when I ask him to do something.) Most importantly, I'm grateful he's alive. He's here with us. And he has a good quality of life despite the challenges he now faces.
I prayed, screamed, cried, and pleaded to be where we are now. These next few days, as painful as they are to remember, are also worth celebrating the miracle we were given. Ian had many ups and downs in the PICU. We had gotten to a point where taking things '“day by day” wasn’t enough because things changed so drastically in any given minute. We realized we could never say he was having a good day or a bad day, because it changed. Constantly. So, we took things moment by moment. That was our life at one point. It’s almost scary now to think beyond a moment. My body and my mind don’t know how to get out of survival mode. The easiest way to cope with it is to stay busy. Which is easy for me. Ian’s needs are constant. Add in Gabby needing me, too, working full time, keeping a clean house, taking care of pets, that all can keep you busy. But I added in joining the PTO at Ian’s school, volunteering, yoga classes, and just overall going places and socializing. This feels like the best way to move forward. By just continuing to live our life.
One year ago, we prayed Ian would be able to wake up from the medically induced coma. We prayed for his protection during the brain surgery/biopsy/tumor resection. We prayed for the medical staff taking care of him. We prayed for a low-grade diagnosis. We prayed for Ian’s recovery and strength.
Ian only had a 2-3% chance of his tumor NOT being high grade. NOT being malignant. NOT being aggressive and needing to be treated aggressively. Please think about that. 2-3%. That’s it. And it was him. He was that miracle.
I don’t know if I’ll ever understand why this has happened to him. But I know he’s meant to be here. I know that the way things played out for us, both last year and on the day his tumors were discovered, things played out in a way that can only be described as divine intervention. There’s a greater good in tragedy. We just have to find it. Follow it. And let the light, the kindness, the love, shine through.