It’s hard to believe that we’ve been in Houston for over a month already. There’s been so many ups and downs during our time here. I imagine that it will be like this until we actually get out of this place.
The thing that Anya is having a problem with now is her weight. They’ve been weighing her daily. Yesterday, she weighed 72.8 pounds. She’s been having some major stomach problems which could be the underlying cause of her weight loss. She told me that it feels like someone is stabbing her repeatedly in the gut. The only thing that’s been helping her is IV morphine, which is not something that a pre-transplant patient should be on, but the pain is unbearable for her. The doctors just changed her feeding tube food and added an anti-diarrhea drug, so hopefully her stomach problems will be fixed soon.
Nutrition and weight loss is a pretty common thing for CF patients awaiting transplant. The ideal BMI for a pre-transplant patient going into transplant is between 17 and 30. Anya’s BMI is currently at 14.2. In order to get to that minimum 17 BMI, we need to get her to about 87 pounds. With all of these potent antibiotics that she’s taking, along with the round the clock tube feeding, numerous bouts of diarrhea, and some major stomach pain, it’s going to be yet another challenge.
I feel like almost everything else is under control right now — her breathing, the mycobacterium infection, her strength and mobility — the only thing now is her weight. The good news is that the doctors are being more proactive with her weight loss.
For her diarrhea, they prescribed Lomotil (Atropine), which seems to be helping (Immodium did not work). For her stomach pain, they did a CT scan in her abdomen yesterday to see if it’s gall stone related. The IV morphine really seems to be helping as well. And for her nutrition, they are going to start her on something called TPN (Parenteral nutrition), which is “food” administered through an IV line. The TPN is in addition to her feeding tube and whatever she can eat through her mouth. Of course, as with anything new, there are some added risks with the TPN, like infection, but at this point, I think whatever we can do to increase her weight is necessary.
Now for the good news. A lot has happened over the past 5 days. First off, one of the chest tubes was removed this past weekend…the bigger one. I was hoping that the smaller one would come out too, but I don’t think that’s going to happen for a few more days. Secondly, Anya’s talking again. The respiratory therapist capped her trach with a passy-muir valve, so that she can talk while she’s on the trach collar. Here’s a video that I took of Anya calling her step-dad right after they put the valve in:
Anya’s also been walking almost daily. The first time that she walked, she did a full lap around the floor, which was roughly 440 feet. The second time, she walked 880 feet. And the third time, she walked 880 feet on the trach collar. Today, she did a full 1,180 feet! The doctors were worried that she wouldn’t be able to walk 100-200 feet, but Anya showed them!
Another bit of good news is that Anya can eat again. Kind of. She did a swallow test two days ago to see how her tracheal flap responds to food and liquids as they enter her throat and she passed! So, the doctors cleared her for a “clear liquid diet”. She had her first taste of real “food” last night. Out of all foods that she could have, she wanted some Miso soup and edamame beans.
In addition to any calories that she consumes through her mouth, the tube feeding is currently giving her 2cal/mL at 60mL/hour, which puts her at 120cal/hour or 2,880 calories per day. Just with that alone, she should be able to gain some weight. If we add the TPN, I’m hoping that we’ll see some weight gain soon.
Other than her weight, I really feel like Anya has made a lot of progress lately. Her unwavering strength is truly inspiring. The next time I think about quitting something or stopping an exercise because it hurts too much, all I have to do is think about Anya and I know that I will get through it.