Judith's quarterly clinic visit was yesterday afternoon. It was a typically gloomy day like the majority of clinic days are, but the weather didn't match the mood of clinic since we had a great visit! It was unexpected, and all of us (her team included) were expecting a longer visit going over various options. We dodged a bullet this time, but still have some things to consider down the road.
Everyone is pleased that Judith gained weight this time! She's up to 28 lbs, and is 36" tall. I know she didn't shrink and lose that 1/4" since her well visit, but she didn't want to stand tall with her heels against the wall so they could get a more accurate height. Either way, I don't think she grew that much in a month anyway, so she's still likely hovering around the 36 1/4" mark. For height she's in the 19th percentile, and moved up to the 22nd percentile for weight! Her BMI also increased slightly, and she's now at 15%. So while that's still a far cry from the ideal 50% they would like her to achieve, she's progressing instead of regressing and the team is pleased. I seriously did not expect to see progress like this, and am happy that we don't have to start some of the other interventions we had discussed on the phone!
Our dietician didn't feel comfortable starting an appetite stimulant right now since Judith is gaining and progressing. It's something we want to hold off on until she absolutely has to try it so it doesn't lose effectiveness by the time she would really need to rely on one. I also talked to Dr. G. about a realistic outlook for the possibility of needing a g-tube. With Judith's poor eating habits lately, it's something that's been coming into my thoughts more frequently, and it's something the team is considering. He said that while he does not see a need for one right now since she's making some progress, it's something we need to keep considering for the future. We can't take it completely off of the table, but for now we can put it on a back burner and let the thought simmer until it's absolutely necessary to put one in.
We also discussed the recurring respiratory symptoms Judith's had since she had her sinus infection, and are waiting to see how she's doing once we finish this round of Bactrim in another week. Her MRSA is still sensitive to the Bactrim, so the increase in cough shouldn't be from that unless it suddenly became resistant to it since her last culture in October. If her cough is still present after we're done with this round of antibiotics, we'll reevaluate and start another round as needed.
I'm still at a loss about how to make visits easier for Judith. She's still a miserable beast and wants nothing to do with them when they examine her. At least we didn't have to almost pry her mouth open to get the culture this time since she was busy coughing and screaming, but we did get a really good one since she was coughing. We'll know the results in a week like always, and I'm keeping my fingers crossed that there aren't any pseudomonas present that could be aggravating the cough.