My 22nd infusion was a day earlier than originally scheduled. Tuesday was declared a national holiday. So they had to move my infusion one day ahead of schedule. Some parts of the hospital such as the pharmacy only have skeleton crews during holidays so my doctors were worried that we might not get decent attention on that day. So we decided to play it safe and move it one day ahead.
I went to the hospital Sunday evening. Checking into the hospital was faster and smoother since there were only a handful of people in the admitting section that day. All was well.
I spent Sunday night reading and watching T.V. Doing everything I can to stay awake. I wanted to watch the Brazillian Grand Prix. A special formula 1 race, it being Michael Schumacher’s last. It was set to air live at 1 a.m.
Suffice to say I woke up Monday morning still feeling sleepy. I got up at around 7. We ordered breakfast and ate. I had my usual breakfast, pancakes and sausages.
The infusion went well as usual. Except for a power outage but luckily like most hospitals, PGH has a power generator so the power interruption was temporary.
It’s my 22nd infusion and currently the second to the last of the batch of Myozyme we have here. The hospital has only one more batch in stock before it runs out. We’re all praying that the new batch arrives in time. It would be a shame if the infusions have to be interrupted. We’re slowly making progress and as much as possible I’d like to continue building on that progress. Myozyme is too expensive to waste and an interruption of the infusions will set us back.
We’re preparing for this contingency in the sense that I might have to get the next infusion 3 weeks from now instead of 2 to extend our time. Hopefully that extra week can get the meds here on time.
Going back to the infusions… I finished on time and got to go home on time as well. It was different this time since my mom wasn’t around. She usually comes whenever I have an infusion however she was about to leave for a trip to Taiwan and she needed to prepare. So for the first time since we began it was just me. Oh ok.. well not just me. My aides were there and the doctors and the temporary nurse and some other visitors..