Sarah wanted to be sure I posted this picture. She is so proud that she always uses her bucket now.
The good part about coughing is the mucus that follows. During these episodes, Sarah has so much mucus. We refer to it as asthma crude, although a few times doctors have tested for Cystic Fibrosis because the mucus buildup is so similar. The test always comes back negative, but I wish we could figure this out. For years, we have thought we were alone on this path. Since joining the blogging world, we realize we are definitely not alone. There are so many other families whose children with Down syndrome experience the same episodes. We also thought it was because of the Ohio weather, but we now know this is happening in all geographic locations. Another common factor seems to be that the doctors are frequently baffled with the cause and how to treat it. Is it asthma? Copd? Pulmonary hypertension? or is it something unique to children with Down syndrome that has yet to be identified due to lack of research dollars?
Nothing like Daddy to make you feel better. It is 5:30 a.m. and John is heading to the office. A quick detour first. Sarah is demanding apple juice and we are all out. Thank goodness for the 24/7 CVS down the street. Thanks dad.
The supplies for home IV therapy just arrived. They are always packed so neatly. And of course with every box comes the special red, bio hazard container. For a while we had several of these in our garage, full. What do you do with them? You can't put them out on the tree lawn on garbage day. I know you're suppose to take them to a medical facility, like I ever remember to grab them when we are running out in time of crisis.
Home IV supplies have come a long way since we first started doing this. No need for poles and floppy bags anymore. All the medicine is preloaded in this cute little container. I'm sure there is a medical term for them, but we call them "baby bottle pops." You know, that candy the kids like that looks like a little baby bottle, only it's full of colored sugar. Stay tuned, the home health nurse should be here this afternoon. There could be fireworks if she insists on changing the IV lead line. Sarah does hate that. But being in your own bed sure beats the hospital.