It’s October. Normally our family’s favorite month. We all enjoy fall, doing fall activities, and the kids enjoy “spooky season.” We like going up to the mountains on a nice weekend to see the leaves all changing colors. Normally by now we start planning our traditional October weekend beach trip. But this year, instead, we’re planning Ian’s recovery. We’re planning his rehabilitation, where he’s going to sleep when he comes home, at home school services, etc. And yet, we can’t even fully plan these things yet. Not until he wakes up.
We’ve been here for 2 weeks now. It tends to feel like nothing is happening, but compared to where Ian was 2 weeks ago, Ian is in a much better place now. His cranial pressure spikes have been more under control. Our neurosurgery team has explained that we all experience pressure spikes throughout our day, so the amount Ian has been having is much more reasonable. They also explained that because the ICU team is able to get the spikes under control within 5 minutes, this is a good sign that he is in the right direction. They still are working to keep the cranial pressure spikes to a minimum though because Ian’s brain needs to rest as much as possible.
His EVD drains are starting to look clearer. This means the blood in Ian’s brain from the hemorrhage is clearing out. He also had a CT scan on Thursday, which showed decrease pressure on the ventricles and more stable compared to the previous scans.
Ian is coming off more and more medications. Ian was off the blood pressure medicine for a few days, but his blood pressure dropped suddenly in the middle of the night last night. As the doctor explained to me, they took him off his steroid medication and believe this may have happened too fast for Ian’s liking. (We can’t know these things unless we try, and Ian has just been particularly sensitive to change.) He did have to go back on the blood pressure med, but he is already almost off of it again after a few hours, which is good. The medication that is putting him in a coma is now 2 dose changes away from him being completely off of it. They are weening him half a dose every so often, and although this can change at any moment, we are hopeful we are near the end.
This has easily been the most difficult thing Mike and I have experienced. Any moment you feel like you might lose your child is the scariest thing a parent can through. it often feels like we have so many setbacks. So many 1 step forward, 2 steps back kind of moments. We know we need to be patient, but it gets harder as each day passes.
Our doctors have told us they believe the tumor that ruptured might now be malignant, as it is more common for malignant tumors to rupture as opposed to benign (which was Ian’s original diagnosis). And although some doctors believe it could still be benign, they let us know they believe it’s less likely. The only way to know for sure is to get the biopsy done. Ian still isn’t strong enough to handle brain surgery, so this is off the table for an unknown amount of time. We worry with each day we are in here is a missed opportunity to treat him. A chance for the tumor to grow. It’s difficult. Waiting. Being patient. These are instances where putting off treatment can make things worse. But putting him through surgery right now can cause more harm than good. I feel stuck. And completely helpless.
It’s hard, as a parent, to be in a good mental state during your child’s time of crisis. My kids exceed any and all things in my life. Including myself. I would gladly take their pain for them not to suffer. But I can’t actually do that for Ian right now, and it kills me. I’m not a perfect human. And I’ve thought countless times that this is my karma. This pain is what I deserve. And I beg and plead and pray to God, the Universe, whoever is listening, to not punish Ian to teach me a lesson.
It seems like Ian, despite the small setbacks we have, is still trending in the right direction. And even when we get out of this phase, our fight is far from over. But I would do anything to be able to hold my baby boy in my arms again, to hear his voice, to bring him happiness.
Even though we don’t know for sure what we are up against, one thing we do know is our family is known for our resilience and strength. Our family is also known for beating the odds here and there.
It’s hard to keep pushing forward. But it’s not an option to give up on our boy. So, we’ll keep pushing. We won’t give in. We won’t give up. Our boy is a #ChampIan
