Post by jillgibson on Sept 11, 2006 15:08:52 GMT -5
Like many of you, I don't feel Avery is "that" special needs. However, I am constantly worried about her health and know that without proper care at the right time we are headed right to the hospital. Even with proper care we can end up in the hospital.
My main frustration is that while many asthmatics do quite well, Avery has a very severe case. With our last incident (last week) she went from being perfectly fine to being in respiratory distress in about an hour. There are many, many adults that don't think it is that big of a deal. For Avery, it is huge. Simple things like going out to dinner are complicated at times. She can't go in a restaurant with a smoking section or ones that use certain chemicals to clean.
We also have a very short list of people qualified to care for her. Right now there are only four people (DH, my mom, my friend's mom, and I). A teenage babysitter is out of the question and most other people are too afraid.
Right now she is on four different medications and different amounts of each. I should have gone into nursing. Right now, her treatments take about an hour and a half a day (two 45 minute treatments)...and that is just because she is healthy. We're also doing the chest pounding (like is done for Cystic Fibrosis) which I get minimal cooperation for. I'm the only person trained at this point to do the two longer treatments and the pounding so, basically, I have no life other than her (not to complain, because she is way worth it!) and work. Those treatments are at 8:00 AM and 8:00 PM. Quite honestly, I don't trust anyone enough to let them do it.
Wednesday we go for another round of blood work because she had very low potassium levels in the hospital (which happens when they get a lot of treatments). It was beginning to effect her kidney function so she was put on a potassium IV. She needs rechecked now to see if she is holding her own without the supplementation.
My main frustration is that while many asthmatics do quite well, Avery has a very severe case. With our last incident (last week) she went from being perfectly fine to being in respiratory distress in about an hour. There are many, many adults that don't think it is that big of a deal. For Avery, it is huge. Simple things like going out to dinner are complicated at times. She can't go in a restaurant with a smoking section or ones that use certain chemicals to clean.
We also have a very short list of people qualified to care for her. Right now there are only four people (DH, my mom, my friend's mom, and I). A teenage babysitter is out of the question and most other people are too afraid.
Right now she is on four different medications and different amounts of each. I should have gone into nursing. Right now, her treatments take about an hour and a half a day (two 45 minute treatments)...and that is just because she is healthy. We're also doing the chest pounding (like is done for Cystic Fibrosis) which I get minimal cooperation for. I'm the only person trained at this point to do the two longer treatments and the pounding so, basically, I have no life other than her (not to complain, because she is way worth it!) and work. Those treatments are at 8:00 AM and 8:00 PM. Quite honestly, I don't trust anyone enough to let them do it.
Wednesday we go for another round of blood work because she had very low potassium levels in the hospital (which happens when they get a lot of treatments). It was beginning to effect her kidney function so she was put on a potassium IV. She needs rechecked now to see if she is holding her own without the supplementation.
