Another week has passed! Thankfully, this past week was not as eventful as the previous week (i.e. ICU visit). Uneventful is good though.
Anya spent most of the past week recovering from the ICU visit where her CO2 levels shot up to 147. She hasn’t had an episode since then. We bought our own pulse oximeter to make sure that her O2 levels are not dipping. That’s usually the first indicator of something not right.
The bronchoscopy that the doctors performed last week tested positive for a virus called HSV, but nothing else. HSV a pretty common virus. The doctors weren’t too concerned with it, but they wanted to make sure that it didn’t get out of hand, so they put her on a drug called Acyclovir for 10 days. This virus may also have caused her shortness of breath and high CO2 levels.
Anya’s CO2 levels are back to normal now (~70). Normal for her, at least. Her oxygen levels have gone down a little bit due to the latest setback. She hasn’t been able to walk as far, nor can she put on the talking valve (passy-muir) because her O2 levels dip below 90 when she does, so she hasn’t been able to talk for about a week now. Hopefully, she’ll continue to improve a little bit, so that we can put the passy-muir valve back in. Not being able to talk really sucks! For her and for us.
This past week, Anya walked several times. Most walks have been on the vent. On the vent, she was able to walk about 700 ft. On the trach collar, she was only able to do about 250 feet. The doctors are telling us that distance is more important than being able to walk on the trach collar, so the plan is to try to get as much distance as possible from here on out.
Her weight…we’ve really been struggling with this one. She went down to about 71-72 pounds after the ICU visit, but as of this morning, she’s back up to 76.6 pounds. She’s still getting 2880 calories from the feeding tube on a daily basis. That alone should be able to help her gain weight, but the vomiting and diarrhea has made it tough. With that said, I feel like we’re making progress with the nausea and diarrhea. They changed her anti-nausea medicine to every 6 hours instead of every 12 hours and they’ve put her on a schedule for the Lomotil (anti-diarrhea), instead of having her take it “as needed”. Both of these changes seems to have helped. I will be happy if we can get her back up to 80 pounds. I’ll be ecstatic if we can get her up to 85 pounds.
One of the big discussions that we had this week with the doctors was concerning the 3-6 month time frame that they gave us. There was a still a lot of doubt about when they started the clock. Based on what one of the doctors told us, the official clock started around August 17-25, which is when they started treating her for the mycobacterium abscessus. So, as of right now, we’re looking at a minimum of late November before Anya is eligible to be listed. Of course, the infectious disease doctors still want her to get the full 6 months of antibiotic treatment before actually going to transplant, which would put us at late February 2015.
I think the goal is clearer now. If we can get to Thanksgiving without too many setbacks, then Anya will be, at least, eligible for transplant. I don’t think that they will actually list her at the time. I think the only reason that they will list her before 6 months is if her CO2 levels are so high that can’t clear it on the vent/CPAP. At that point, they’ll probably have to put her on something called ECMO to clear the CO2, and she’ll be listed, if it gets to that point. Hopefully, it doesn’t because ECMO is not something that anyone wants to be on. Thankfully, it’s an option here at Houston Methodist. For now, the immediate goal is to get to Thanksgiving without incident, so we’ll just focus all of our energies on that.