My son and I are being hermits today. We are getting pretty good at it, with Gav lying on the couch and me restlessly prowling around the house.
I can’t say that his health has improved much since my last post. If anything, in some ways, things have taken a definite downward turn.
He did make it to the last day of school, and then had a blissful almost event-free 10 days. Then a bout of motion sickness in the boat at the cottage, a fall and a cranial collision with his cousin, and the next day, a little over a week ago, the arrival of some frightening new symptoms.
He went to a full-day camp last week, and on the first day, complained of being “sleepy” and didn’t eat his lunch. He then went to sleep for over 4 hours when he got home. The next day he felt well, but had another accident in which he hit his head. Thursday he felt sick at camp again, and needed to lie down. And yet he was completely active in the afternoon. Friday another round of this in the afternoon, he said, My head feels funny again, I need to lie down. A few hours later the feeling passed and he was up and about again and asking for toast.
I went over everything, a million times, while my own head felt funny from riding the constant hits of anxiety. I questioned the medication he was on, I spoke to GI clinic and was advised to discontinue it. I thought that if the symptoms ceased, we would have a culprit, and then life would, tra-la-la, go back to our weird version of normal. But two days later, after a very active morning at Sportplay camp, he needed to lie down again and felt like he was going to be sick. His head felt “weird” again. My stomach dropped several miles towards the centre of the Earth.
I watched him for a few hours and finally decided enough was enough. I packed him up at about 3:00 and took him to the ER, where craziness ensued. By the time we were in a room, he felt well again but wanted to stay lying down. He was seen by various docs, our case was reported to neurosurgery and a stat CT was ordered. We finally convinced the fellow to come and see him before flinging him into CT, which he did around 8:00 in the evening. After examining Gavin, he remanded the CT order but decided to consult with Dr. Dirks, as he felt there was a possibility that Gavin’s shunt was over-draining him. They decided together to admit him, and wanted to do a full MRI, possibly that night.
We got into a room on the neurosurgery unit at about 10:00, confirmed that MRI was not happening that night. I made my way home for a few hours of restless sleep, and returned to the hospital to relieve Craig who then, of course, had to go to work. MRI called at 9:00 am, we went down, and had a hairy time with IV and injecting the contrast. I am getting so sick of the nurses’ party lines, “He is just getting upset because the saline feels cold going in.” Yes, I’m sure my child is screaming at the top of his lungs, with tears streaming down his face because the flush feels a little chilly.
Gavin watched Kung Fu Panda while the scanner did its thing, and I read an ancient issue of Chatelaine, and prayed, and learned how to redecorate my imaginary country home, and prayed. And the scan was over.
Back upstairs, Gavin was still forbidden to eat or drink, in case we had to go into surgery. He was not happy about it and wanted something to eat. We killed the hours. I asked the nurse every few minutes if one of the docs would like to share the results with me. I knew we weren’t going into surgery when the nurse finally told me Bean could have some lunch. He inhaled a bagel and cream cheese.
After a wait of almost four hours, the nurse practitioner finally came to tell me that the scan was clear. As expected, his ventricles looked very small, which may mean that we begin to consider changing his shunt. But that is a decision for another day.
With relief, joy, and a much lighter heart, I left him with a volunteer while I went out to get a celebratory latte.
So we are happy. But it doesn’t change the fact that my little monkey is just not well. And I don’t know why. Yesterday Bubby and I took him to see a movie, and he threw up immediately afterwards. Was it the noise, too much stimulation, too much salty popcorn? The horrible heat-wave we are experiencing must be a piece of the puzzle. He spent another couple of hours on the couch and then felt well enough to be up for a bit before bedtime.
This morning was great – he ate a huge breakfast and I took him to his morning camp. But I had only just arrived home when they called to say he felt sick. By the time I returned, he had thrown up 3 times and was sweating profusely. I dosed him with ondansetron, pushed fluids and brought him home.
Yet another day spent lying on the couch, yet another day of his childhood, wasted and feeling like garbage and trapped indoors when he should be enjoying these summer days to the fullest.
I am angry. I don’t want us to be hermits. I don’t want my son watching endless hours of Netflix shows because that’s all he feels well enough to do. I would like him to feel BETTER.
I know though, that feeling angry and helpless isn’t helpful. I feel like I have tried everything to help him, but I know that I haven’t. In order to try everything, I am taking him to see a craniosacral therapist next week to do some work on his head. His naturopath and I are switching around his supplements. We will continue with osteopathy. He is going to get massage therapy. We are taking him to a kids’ meditation group at the Buddhist temple.
We have not tried everything until we’ve tried everything.