Incapable

So, the full story.

The orginal plan, was that I would go to theatre on Tuesday, have the trach capped on Wednesday, have it taken out on Thursday and go home on Friday. I did manage to get home on Friday, However, I still have the trach in.

As planned we capped it on Wednesday and things went fine during the day. However, I woke early on Thursday morning and I felt like my breathing had gone very tight. I ran a load of nebs, but they didnt do much to help. When the doctors came around on ward rounds, I explained to them how I was feeling. They decided to keep me capped and see how things went. (By capped, it means to have a cover put of the trach tube, so essentially you are breathing through your mouth like a regular person)

I did not feel right at all on Thursday. I am always sleepy, but this went beyond it. The minute I could, I got back on my bed and went out like light, not even getting washed and changed. Dinner came, I woke for maybe 10 mins and was well out of it again. I felt like crap.

The nurse was monitoring my obs, but was not really one of the more alert nurses. When my friend visited, I woke up a bit more and we decided to go on a walk around the ward. One of the other nurses noticed how loud my breathing was and she was not happy with it.

Long story short, I managed to keep the cap on, but I had some adrenaline nebs to keep my throat clear enough to breathe.

Given the issues  i had had with breathing, the doctors decided that it was best to leave the trach in for the time being. They hope whatever is causing my breathing to go so tight, is just swelling from the surgery. There was nothing more they could really do in the hospital, except wait for the sweling to go down and so they said I might as well go home and wait. Which is good in a way as my Mum starts her first round of chemo on Wednesday and I want to be here for her and to take her and such.

My two nieces were visiting and going home Friday, so I decided to go with them as they could help me with my stuff. This is where I pushed myself too much.

My breathing was being lame and I hadnt slept well, which was not a good start. Due to this, it took me about 4 hours just to pack my stuff up. By the time we left the hospital, I was violently shaking with the effort it was taking to move around, with my stuff. Not to mention that it actully decided to be really hot in London, instead of its usually cool self.

We jumped the tube as we had to get to the other side of London and this is where disaster struck. I was still feeling weak and shaky. I was pulling my case and humidifier whilst trying to keep both nieces in sight and direct them the right way, with very little voice. And out of nowhere, a huge flight of stairs. No lift, just stairs.  At one point, I got half way, stopped to catch my breathe and felt like I was about to faint. My head was pounding, my muscles crying out for oxygen. A wave of exhaustion swept over me and I just thought, I cant go any further. I waited a minute or two and eventually managed the rest of the stairs.

Then the train got stuck for about 10 minutes, which seemed to take forever and I was struggling to stay standing. by the time we got off the tube and stepped into the train station, our train had just pulled out of the station.

The two kids were just staring at me, kinda saying what do we do now? I felt like I couldnt even manage another step forward. I just wanted to give up. To drop everything, to sit on the floor and burst out into tears. I didnt have the energy, physically or mentally, to go with any plans, to sort anything out or even move. I was just to drained to do anything.

I never want to feel like that again. I never want to be that incapable. That stuck.


I eventually managed to get things together and spoke to the train office explaining. They were nice enough, and probably scared by this rambling twitching creature clinging to a huge carrying bag with hospital pharmacy written all over it. They then let me know the platform number, so that we could get down there before it was displayed to the public, allowing me to board the train and actually get a seat.

But last night, I was in so much pain from the exhaustion, that I could not sleep, so most of today has been spent catching up on that.

And the trach? I coughed all through last night, coughing up a fair amount of new blood.But today seems a little easier. I have struggled through the day, but as the cool of the evening has settled in, I have re capped myself and managed ok with it.

So here is to hoping that the next few days continue to improve. Now just to decide if i should sleep capped or uncapped.