We had a long chat with the docs today. They still have no solid evidence that Sally’s breathing issues are anything in particular so we have requested that we go out on a bit of a limb and we reduce one of Sally’s drugs to see if it is a drug issue.
This isn’t completely off the wall. This drug does have breathing difficulty as a listed side-effect but it is a very rare one. It isn’t a side-effect one would normally associate with this drug. But we did notice, when looking at the timeline, that her breathing did start to deteriorate about the time she started taking this drug. Since then we have been increasing the dose in stages and, lo and behold, her breathing worsened.
I must point out that this is highly circumstantial and speculative and we mustn’t place too much faith in this making any difference… but in the absence of any better suggestions it is worth a try. Of course, reducing the dose may mean her head pain returns but right now that is a risk she is prepared to take given her difficulty with breathing.
So Sally had her first reduced dose tonight and we will see how she does. One thing is certain though… her breathing cannot get any worse than it is now without her being very distressed. Right now she is OK… just…
Planning continues for her eventual return home. I am getting a TV installed in our bedroom and we are looking at getting strollers both up and down stairs to help her get around. With the changes in drug regime still occurring it is unlikely she will be returning home next week… but the week after is definitely on the cards right now.