November 10, 2011 mcfadyena

Trey's November trip to UNC for IT dosing has been cancelled

This is Trey moments after he lost his front tooth. 🙂
Two weeks ago tomorrow, Trey had emergency surgery to remove his infected intrathecal port. Yesterday the neurosurgeon who removed the device, Dr. Cochrane, took the stitches out. Trey was a rockstar. For about 15 minutes, Trey lay on his side saying ‘ouch’ and wincing every time the doctor pulled on a stitch. But Trey lay still while he did it. I was SO impressed. We were doing deep breathing and after a couple minutes, it made me think about labour. And yoga. 🙂
Trey also had 3 other appointments yesterday. One was a neuro exam at BC Children’s hospital (it was finally set up, yahoo!), as part of the IT trial.
He also saw the osteopath we’ve been seeing since his diagnosis. Her name is Carolyne Abrams and she is unbelievable. Carolyne will pick up on things I’ve not noticed, haven’t told her about, or things that have not yet happened. For example, she will ask if Trey’s had a recent ear infection in a specific ear, when he did, before I say anything. She’s noticed when Trey was about to get a cold or flu. She’s also had a lot to say about the fluids surrounding his brain. When Trey was younger, she commented that his fluids were ‘sluggish’. She needed to see him every 6-8 weeks to get them moving well. However, there were times when his fluids were flowing well, so she wouldn’t need to see him as often. As he got older, she noticed that his fluids moved better and she could get away with seeing him 2-3 times a year, which is what we’ve been doing for a few years now. However, yesterday was different. We went in and Carolyne said Trey’s brain and the fluids surrounding his brain felt completely changed. I told her about the trial and she said she could feel and visualize the enzyme in there. She said though, that the enzyme didn’t feel completely absorbed by all the tissue of the brain. Her work was to facilitate the absorption. I know not all of you are believers, but because she has picked up on so many things in the past and helped Trey in so many ways, I am. It was like she was reading Trey’s brain! It was so cool.
Trey also had a sleep study last night, during which he slept 20 minutes. Good times.
But the biggest news is that Trey’s IT dosing at UNC next week has been cancelled. The neurosurgeon yesterday commented that Trey’s lumbar area was not healed enough from his recent surgery. Because of the infection (which is why the intrathecal device was taken out), he would not risk putting ANYTHING into Trey’s central nervous system (CNS), for fear that the infection is not completely gone and putting a needle (which is how they were going to dose Trey this month-via lumbar puncture) into his CNS could put the infection into his brain and kill him. I relayed that info to UNC (Dr. Muenzer). However, I learned that lumbar punctures or spinal taps are possible in three different areas of the back, so I inquired why they couldn’t use one of the other two sites to dose Trey. In a nutshell, there are two other ways to get into the spine, but they are risky (ie. if they put a needle in higher up, they risk hitting the spinal cord, and paralyzing Trey). If it was an emergency, they’d do it, but with the situation Trey is in, it is not worth the risk. Dr. Muenzer spoke with Dr. Cochrane today, and they agreed. It is not worth the risk for Trey or the trial. So, Trey will miss his dose this month. Chances are we will go back to UNC as planned in December, but there is a small chance we’ll go back in a couple weeks when Trey is healed. I’ll post when I know.
In the mean time, we’re well. It’s overwhelming, adjusting to life in a trial, or at least our life in a trial. I thought we’d have a break for 2 1/2 weeks back home before going to NC again. Instead, Trey had emergency surgery, spent time in the hospital on heavy antibiotics to prevent meningitis and death, and now, when I thought life might find a rhythym, our trip has been cancelled and I’m thrown back into the unknown again. When people ask us if we can make a birthday party next week or hockey game on December 12 or plan speech therapy or occupational therapy or nerve conduction tests, I have now learned to say: ‘I don’t know.’ Right now, we’re one day to the next and I’m learning to work with that. I was a ‘planner’ in my previous life. But we’re adjusting. And we’re good. The small picture is a bit of a gong show, but the big picture is awesome.
Love and hugs to you all,


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