We are waiting for our Christmas present this year. Gavin is in MRI as I write and we are waiting for the news that the scan is clear, no sign of tumour growth, no problems in Gavin’s brain.
Today has not been without difficulty. Despite my resolution to stay positive and think no negative thoughts, it is hard to prevent them from creeping in when you start the day with 24 electrodes attached to your son’s head. Last night our nurse saw Gavin do something strange in his sleep, moving his lips, twitching his shoulder, etc. and decided that he’d had a seizure. I tried to tell her that this has not been unusual for Gavin since he began chemo. I also tried to explain that he had an EEG in the past and had been seen by neurology and declared “normal.” She was pretty convinced that she’d seen a seizure though and reported it as such. I suppose it is her job to report things as she sees it, but it has made my day very difficult.
Anyone who has undergone brain surgery is more susceptible to seizures because of scarring in the brain. I have researched this in detail because I spent many, many sleepless nights in the summer worrying that Gavin would have to add epilepsy to his list of challenges. As many people have told me, it’s not the end of the world. Yet add that to the other difficulties he faces and these things begin to add up. This morning I was very unhappy to learn that Gavin would undergo an EEG and CT scan to follow up on the seizure activity. Craig and I decided to suggest to the team that they do an MRI rather than CT as he is due for his quarterly scan anyway. Everyone agreed with that suggestion, thankfully.
I felt very anxious and upset that I had to worry about this on top of everything else. In terms of his other conditions, he is doing quite well but not making very fast progress with his lungs. There was talk of extubating him tomorrow but now I don’t think that will
happen. In good news though, he had his chest tube removed yesterday and is beginning to heal from his surgery. He has also had his femoral line, peripheral IV and catheter removed. We are still working on ART line and respiratory tube, obviously.
He is now more awake and has his eyes open for much of the day, although he is still on morphine so is quite spacy and subdued. He is certainly not my active little guy right now and that is hard to see. He is sad and doesn’t smile much. Yesterday I brought in a present from a friend and he got excited to open it, so at least he was interested in something! It was a Thomas the Tank Engine from our friends Rose and Jordan, a much-beloved toy of Jordan’s which I’m sure will bring us luck. Gavin held it in his hand for much of the day. Today he mostly wanted to watch DVDs, but consented to read books for a little while too. We are having a hard time communicating because it’s difficult for him to understand that when he talks, no sound comes out. We are trying for thumbs up or squeezing hands but he’s having a hard time with the concept.
The results of the EEG are in and show no sign of seizure activity. The EEG was done while Gavin slept and he was very twitchy the whole time so it was a good time to do it! Of course, this is not the
final report, but is good news for now.
We hope to get the results of the MRI tomorrow, so I will certainly let you know what happens.
I’m offering thanks today to Gloria, for coming to do reiki in the ICU, she is a selfless person. I also need to thank the beautiful mamas of my mother’s group for bringing meals every day for the last many days. They are wonderful! My most special thanks though, go to Shawna for delivering meals day after day with no thought to her own agenda. She is an incredible chef who has concocted beautiful soup, juices, salads and veggies, each with a warm note that brings a smile.
I know you are praying with us, I know Gavin is going to be fine. Keep sending your love and best intentions. That more than anything will get us out of the ICU.