My sons are Aaron 19 and Andrew 23, neither is trached, neither have had pneumonia, both use bi-paps, my 19 year old went into respiratory distress last year in June 2008, we had two options, go to hospital with the possibility of being trached or Hospice/Home Health, we choose hospice because at first we did not really know what was going to happen to Aaron, he went from using the bipap only at night to 24/7 in a day, he had been getting more tired and had a cold a few weeks before that and I think it just caught up with him, he is not on hospice care anymore, but we have home health come in every week and they provide pallative care and he is doing good, he uses a avap 24/7 with oxygen, my son did not want to be in the hospital or be trached, I tried working with the pulmonologist we had and get him on a LTV, but it has not worked out, my sons and I have decided to try another pulmonologist that a few DMD patients have been going to and some use the LTV non-invasively, and I am hopeful it will work out this time. You will know what is right when making such a tough decision. Good Luck.
Hi Katherine, This is Adele from Maryland. First, can’t wait to see Conrad when he comes to DC. Jason and I are on a cruise starting July 3 and returning on the 9th.
Jason is making the change to a vent and using it during the day. He has been using different face masks, but they all leave sores on his face. I’ve asked the R/T about the sip n puff, but she brought something like it, but if Jason isn’t taking hits on it, the alarms go off. What is Conrad using. I’ve looking on the interned and have not found anything other than your old message on the PPMD site.
P.S will you be here for the PPMD conference next week?