Up The Farway Tree

Home Sweet Home...again!

Well, I did manage to escape this morning and after a 3 hr drive was back home by lunchtime. I was very proactive in organising this discharge and really hassled the poor doctor yesterday to make sure my prescriptions were on the ward last night. The consultant came round about 10am and I was sitting ready with all my bags packed and having just finished my final dose of IV steroids (after harassing the nurses to get it started first thing this morning ;-)) He clearly didn't notice the packed bags when he said I could get home tomorrow. My heart just sank - it was a beautiful day outside and I couldn't bear to stay isolated in that room for 1 more minute, never mind 1 more day. Apparently you are meant to stay for 24 hours after the last dose of steroids but I chanced my luck and asked very nicely if maybe I could just go home today. He paused for a moment before agreeing that yes I could go home tonight. Needless to say he was only 5 minutes off the ward and me and mum legged it to the car - I wasn't waiting until tonight! I did check with the nurses and they didn't see a reason to stay so I wasn't arguing with that. It's so good to be home again after what was a scary few days and I have been a little overexcited and unable to sit back and rest. Hopefully tomorrow I will be able to chill a bit more. At the moment the assumption is that the steroids will have worked and I will have another bronchoscopy in two months time, and lung function checked at clinic in three weeks. It would be amazing if I could top my 75%!

The other good news is that I also asked the consultant about removing my peg tube, which is still causing me a lot of pain. He said as long as I was eating then it was fine to remove it. My weight has still not gone up but I am wondering if that has been related to the rejection, so am hoping it might start to increase now. I phoned the peg tube nurse specialist who has told me to remove it at night as you can't eat for 6 hours after taking it out - because it will all come out the hole!! Nice ;-) It will probably need some dressings for a few weeks until it closes over properly and since I have had it for a good few years, this can take a bit longer. I am going to bite the bullet and take it out tonight, so that might prove rather interesting. Incidentally if you are wondering how it is removed, it has a wee water filled balloon which holds it in place - I just have to draw the water out to deflate the balloon and pull it out. Easy Peasy. I had to do this to change the tube every few months anyway so I know what to expect.

While the consultant appeared to be in such an amenable mood I decided to ask about a good friends wedding which is in 3 weeks time. Since I won't be over my 12 week period and also still on higher dose steroids, I thought he would say no. He didn't though! He said it would be ok as long as I was well, that there wasn't big crowds (it's a small wedding) and to avoid snotty nosed children. I think I can manage that ok. I am absolutely delighted to get the go ahead for this wedding and am really looking forward to it. I am due back in Newcastle for a clinic in 3 weeks time, just before the wedding, so please keep everything crossed that they find no reason to keep me this time.

I am also pleased to say that Seb treated me to a few tail wags again, although he looked rather surprised when I walked in the door. He hasn't been as clingy this time, so hopefully he is getting used to that fact that I might occasionally disappear but that I do eventually come back. I will hopefully be able to take him out for a walk tomorrow, as I was trying to avoid meeting anyone today. It will be interesting to see if the steroids have made any difference to how easy or hard I find the walk and I'm really hoping I just continue to improve from now on. I know there may be more set backs but for the moment I am just trying to stay positive and enjoy the fact I am feeling well today.