03.11.13 – UPDATE
To Peter’s Prayer Team:
Some of you have been asking for an update on Peter. It has taken a while to get one out as Doug and I were really behind on things when we returned home from Cincinnati, so thanks for your patience.
Peter is doing very well without the trach, though the doctors told us not to get rid of our trach supplies for two months, just to make sure that he can manage long term without it. We will return to Cincinnati at the beginning of May so that the doctor can scope his repair to check the status of its healing.
He does seem more comfortable without the trach. He sleeps better at night, and he seems much more relaxed in general. It makes me sad to think how uncomfortable he was for so long with that thing in the wrong position.
Also, the intensity level of his daily care has lightened significantly. It is less taxing to care for him without having to suction him every few minutes. Even though someone still has to be with him, the house is more peaceful.
Some have asked whether this means that Peter can now be admitted to formal rehab. The answer is a little complicated. The barrier that the trach presented to his getting rehabilitation is now removed, and we are so grateful. But in order for Peter to receive the most benefit from a program of rehabilitation, he would need to be able to improve daily on repeated skills. Because he is still so inconsistent on his daily responses, rehab would not profit him as much until he can build daily on learning new skills. We continue to hope that Peter will come to the point of readiness on his level of consciousness to receive inpatient rehab treatment.
In the meantime, we are receiving in-home speech therapy–building on the limited oral skills he has right now, like receiving small bites of pudding-consistency food and swallowing–as well as in-home physical therapy and some occupational therapy. More on this later.
When we cross paths with those of you near and far who ask about Peter, you cannot imagine how greatly you encourage our hearts to persevere. Thank you so much for sharing this journey with us.