Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Sorry that I have been MIA... it has been a rough year and it is only the 10th! Ha ha Our youngest still gets SCIG after all these years and has been off for a year and a half. is fighting pneumonia (walking pneumonia) right now. He was sick last week for 5 days with fever. Fever broke Friday and he still had cough, congestion, etc and on Wednesday fever came back-he was as lethargic as he had been the week before and he ended up having pneumonia. He was also sick on our way back from our Thanksgiving trip and spent the week with a significant fever. ph spent the two days before Thanksgiving in the hospital/ outpatient hem/onc clinic in Baton Rouge (we were traveling) because of cellulitis. July we went to CHOP in Philly (we live in NC), August to Cincy for their bone marrow biopsies, Sept back to CHOP for ph to have surgery and then last month back to Cincy for ph. We have had to start intermittent catheterization for his neurogenic bladder-we are doing aseptic (they call it sterile.) catheterization. Each night we have to do a bladder wash with Gentamicin. He's a trooper.it has been difficult because none of the books pertain to him-most people do clean IC and because of his immune system, we have to do it sterile... Been fighting with insurance and have to pay a fortune to get the supplies they won't cover. They are finally covering some, but they have yet to arrive--- so back to the medical supply I went to buy more. I have enjoyed keeping in touch with many of you on Facebook! I love Facebook! If you are on there, look me up - just give me a note that you are on the PEDPid group so that I know who you are :-) 2008 was summed up in 3 trips to Cincy, 2 trips to CHOP, Hospital and illnesses during the only two non-hospital trips (LOL) and all things medical in between! We started 2009 off with a bang ('s pneumonia) and are praying to avoid any bladder or kidney infections with the IC! Peace be with you, Pattie Mom to age 14, healthy, age 12, Shwachman-Diamond Syndrome and ph age 11, Shwachman-Diamond Syndrome Our family website: <http://www.shwachman.50megs.com> www.shwachman.50megs.com Cleopatra's Blog: http://www.somewhereinegypt.blogspot.com Quote Link to comment Share on other sites More sharing options...
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