One of the things we spoke to Gwendolyn's pulmonologist, Dr. Yuan, at length about was the number of respiratory treatments we should be giving on a daily basis. Since Gwendolyn's lung collapsed in May, we have religiously been giving her five treatments a day; four during the day and one in the middle of the night. On one hand it has kept her very clear and healthy, but at this point we had a feeling that it may be a bit on the aggressive side. When Gwendolyn is strong and healthy, as she is now, we have decided that we will decrease the number of treatments to four a day; three during the day and one in the middle of the night – no more than 8 hours apart. We may consider decreasing it to three a day, but that will depend on how she responds to the new schedule. So far she has done pretty well. We have had some periods of heavy secretions and/or her lungs sounding a bit “crunchier” than usual, but when this happens we just do another respiratory treatment to help her out.
I apologize in advance for the next topic, but we promised ourselves when we started this blog that we would be as honest as possible about our entries with respect to Gwendolyn's journey — the good and the not so good.
We have been concerned about Gwendolyn's constipation recently. She has NEVER had any issues moving her bowels, so this is definitely a new change for us. It could be related to our recent adjustment in her feed concentration or to teething, so we've been told, but our big concern is that this is a sign that her disease is progressing, as constipation is a very typical symptom associated with SMA. So far we've been able to manage by giving her prune juice (15ml's) through her g-tube once per day. The worry is that a too full belly hinders her breathing ability. Hopefully this simple treatment will continue to do the trick.