Trey’s first local intrathecal dose was re-scheduled. That makes it sound simple. It was supposed to be today. Dr. Muenzer was booked to fly in, Joey Howell’s Boys with Bigger Hearts documentary team was coming up to film… We went to the hospital Friday for over two hours of appointments. Before Friday I knew very little about how local dosing was going to go: where in the hospital it would be, what doctors would be involved. Fortunately these appointments answered my questions. The same doctor every month, and also a doctor experienced in lumbar punctures, would be doing the LP’s, instead of other possibilities I had heard. The anesthesiologist would be using fast acting anesthetics similar to UNC (Trey falls asleep and wakes up 15 minutes later like nothing happened) instead of long-lasting sedatives, which was another possibility I had heard about. I found out where the dose was going to happen and where Trey would spend his 4-hour observation period- that’s going to be interesting. I get to spend 4 hours with my 3 kids in a space big enough only to fit a small hospital bed (Avery and Sadie couldn’t even fit into the bed with Trey) with 2 chairs, surrounded by curtains. Literally no space to move and I’m not even sure where I’ll sit! After the first dose, I may be making requests. ☺ Anyways, I grilled the doctors involved (thank goodness I was born into a patient/family centred medical age!), received good news in response to my questions, and left. In any case, Dr. Muenzer would be there if anything arose, and I trust Dr. Muenzer with Trey’s life.
45-minutes after we left the hospital, at Whole Foods to grocery shop for dinner with Dr. Muenzer on Sunday night, I got a call from the hospital. The doctor doing to lumbar puncture had an emergency and could not do the dose Monday.
If Trey doesn’t get his dose this week, he will miss his dose this month. This is Trey’s life-saving drug. It is the only reason he can still ride his bike, speak in full sentences and play baseball. It is not a cardiology or ENT or any other appointment that can just be rescheduled. Rescheduling is not an option.
Why couldn’t someone else do the lumbar puncture (it’s a simple and regular procedure apparently)? If this rescheduling/emergency happened the very first time we were supposed to be dosed locally, who’s to say it won’t happen again? Should we be going to North Carolina until BC Children’s is reliable and set up? I called Dr. Muenzer. I called Dr. Stockler (Trey continued to shop while I did that and picked out all sorts of treats!). Everyone thought I should give BC Children’s another chance. On my child’s life. This time making a political choice, I went against what I know and trust and am giving BC Children’s a chance.
Trey’s dose has been re-scheduled for this Thursday. Dr. Muenzer cannot make it. The doctor doing the lumbar puncture will train two other doctors at that time to do a lumbar puncture aided by fluoroscopy. They will be his back-up in case of another emergency.
My long-time friend called me later just to catch up. She asked how I was doing! Letting go, I said. I am learning that letting go is the only way to move forward. Letting go of today. Letting go of the month (June/July) of Trey’s weekly infusions when his port and/or pump weren’t working and I poked Trey in the chest repeatedly to the point of tears, when I had to end an infusion early, staring at the liquid gold called Elaprase I had to throw in the garbage because a silly machine wouldn’t work, letting go of the vacation I had to cancel due to all these complications. Letting go of past arguments and judgemental comments that lead to resentment.
Holding on bogs us down and gives us baggage. Each IV infusion, each IT dose, each disagreement, each conversation, each day, each moment, is new. Light and fresh. I am learning to let go.
Above is a picture of Avery leading a meditation session. My kids are way ahead of me in this ‘letting go’ business. 😉 The photo cracks me up because I had no idea this was going on in my living room until I walked in and saw this. It’s also classic because Trey supports Dr. Muenzer’s observation that boys with a cognitively affected form of MPS II cannot close their eyes on demand, so here is Trey’s version of closing his eyes to meditate.
