We had one minor set back on Monday/Tuesday of this week. Anya’s resting oxygen saturation levels were around 80% whereas they should’ve been above 90%. We couldn’t figure out why because other than a little bit of fatigue, she wasn’t displaying any other symptoms. Her O2 levels were enough of a concern that the doctors ordered an emergency bronchoscopy.
The bronchoscopy did not help her O2 levels, nor did they find any mucus plugs in her lungs. The doctor then ordered an ABG (arterial blood gas) to measure her CO2 levels and sure enough, it came back with a value of 147 (normal = 35 to 45). With such a high amount of CO2 in her lungs, the doctor decided to send her down to the ICU for an overnight observation.
By Tuesday morning, Anya’s CO2 levels came back down to her baseline, around 70. We’re not exactly sure what caused her CO2 levels to shoot up so high. Thankfully, they caught it sooner rather than later, so we only lost about two days of progress.
With that said, the cost of those two days was about 5 pounds of weight gain. On Saturday and Sunday, the nurses weighed Anya and she went up to 77.4 and 77.6 pounds. She was doing great eating breakfast and a big dinner every day for several days, but one trip to the ICU and all of the weight gain was wiped out. The nurses weighed her yesterday and she was 72.6 pounds.
A lot of her weight fluctuations probably has to do with her constant diarrhea and vomiting. The doctors still haven’t been able to find a solution for them yet. And they may not be able to find one until she’s done with some of the antibiotics that she’s taking. The Lomotil (anti-diarrhea) and Zofran (anti-nausea) seem to be helping, but only slightly. Hopefully, they will find a solution soon because she really needs to start gaining and retaining weight.
So, believe it or not, the doctors are preparing to send Anya “home” next week. They feel like she is ready to be released. She’ll still be on a home ventilator and IV antibiotics, but everything will be administered by a home nurse and/or us (Anya’s mom and myself). Home for the next several months will be the apartment that I rented about 2 miles away from the Medical Center. Honestly, I didn’t think that they would release Anya until after transplant, but I guess they have their reasons. We will most likely not be back to our real home in Virginia until she gets transplanted.
I don’t necessarily agree that sending Anya home is a good idea, but like always, we’ll make the best of their decisions. I’m hoping that they keep her here at Kindred for a few more weeks, until we can, at least, stabilize a few things, like her weight, nausea, and diarrhea. I just want to avoid having to go through the entire hoopla of being admitted to the ER, just in case something happens at home because it doesn’t take much to wipe out a few days of progress. We really can’t afford too many more set backs from here on out.
We still have a minimum of one month until the doctors review Anya’s case again. Maybe even four months, depending on which doctor we ask. Basically, the head of the transplant team thinks that 3 months of antibiotic treatments is enough to treat the M. Abscessus infection and the infectious disease doctors thinks that a full 6 months of antibiotics is necessary. Anya’s been on antibiotics to treat this infection for about 8 weeks now. Hopefully, they will find a happy medium soon.
That’s about it for now. Thanks for all of the gifts and cards that people have sent. Please note that we have switched rooms at Kindred Hospital. Here is the new address:
Kindred Hospital, attn: Anya Crum Room 501, 6441 Main St, Houston, TX 77030
It should be safe to send stuff up until next week, but I will update the blog, if and when Anya gets released.