Saturday, July 27, 2013

The 9 1/2 week hospital saga

Wow a whole month between posts.

There are a lot of reasons for it really. I mean I doubt anyone reads here, but it was always more for me anyway. Partly that I have so much to catch up with that it became a tad overwhelming. But also because, I used to write last thing of a night, right before I went to sleep, to allow all the thoughts to tumble from my mind. But I am back on my nebs and so by the time I run them, my hands shake to much to type.

So I am writing before I run them. I am going to do a quick run down of hospital, though my orginal post is half finshed, if anyone wants to read it, I can still publish it, but as I say, this place is mostly for me these days so I still have it in draft.

Hospital was tough. I was finally discharged last week, making my stay just short of 10 weeks. It was one of the toughest periods of my life. There were times when I was too weak or breathless to be able to even shower or make it to the bathroom easily. There were times when I threw up so much that I thought my stomach was leaving my body. There were times when I didnt think I would leave the hospital ever again. Those I admit where some of my most scary days. When breathing becomes such a chore that you wonder how much longer you can manage it unassisted. There were times when I pushed myself so much, that I had to sit on the floor for almost an hour to recover, then almost couldnt get back up off the floor. When I pushed so hard that I was in too much pain to walk for almost a week. There were days when I wondered if I should call my parents to let them come visit before time might run to late. There were tears and fights, but also joy and pride. It was one of the most emotional 10 weeks of my life and its not over yet.

Waking up from surgery, I expected to hurt, but I didnt expect to not be able to lift my left arm. The IV line had tissued during surgery (a common theme these days) nobody had noticed the line for some time and so my arm had swelled to 4 times its normal size. Given that my leg had been split from waist to knee and I couldnt move my neck, having my arm out of use made movement very tough indeed.

But I got myself moving, quicker than they had anticipated but I wanted the catheter and feeding tube out and I wanted to get as much movement back in my leg after them taking muscle out of it as well as skin grafts and finding the cartilage. I did all that and all was well.

But then my neck swelled, my oxygen sats dropped to 82% which for me is a huge thing for me and I looked like crap. I was put on 4 differnt types of antibiotics, but showed no sign of improvement. After late night draining of my neck, at 11pm on a saturday night, results came back that I had a bad hospital accquired infection in all of the areas that had been operated on. There were only 2 antibiotics that would get rid of it and I was allergic to one lot of them. I was put in isolation and begun them. The first 4 days were horrific. I couldnt even keep water down. Everything hurt from throwing up and the lsightest movement had me retching again. I was on IV fluids and injections for the nausea. But they began to worry about me not absorbing my meds as they wouldnt stay down either. At last after almost 5 days, my system began to adjust and the nausea eased off. Over the next 3 weeks, I had to cough all the infected material out, as the swelling slowly began to go down.

Then there were problems with the trachesotomy that they put in in surgery. It was butted into the back wall of my trachea, so not only could I not breathe through it, but it was wearing a hole in my trachea. After a few attempts at fixing it, it was taken out.

That night, I coughed out 3 pieces of cartilage that they had planted in my neck. I cough a lot anyway, jous of crappy lungs, but brining out the cartilage, was something else. The drs face was priceless, when I walked to the Drs room, knocked and asked to see him for a minute and showed him. You could see the cogs whirlling on what to do next, and checking I was breathing ok. Lots of treatments later, where I had to run almost constant nebs all night long, and my coughing eventually settled. For a while the Dr sat at the desk outside my room. Everytime I coughed, I could see him watching me, waiting just incase. It was both scary and reassuring at the same time. I owe a lot tot hat Dr, for although I didnt freak out, it felt like a team work thing. I didnt freak, because I trusted him. The Dr on nights the following week, would have spontatniously combusted if presented with the same scanrio and I dont think I would have felt as safe. Anyway, my surgeon was phoned at home and informed and such.

The following night, I coughed out some more cartilage, meaning at least 4 out of 7 pieces were now outside my body (though I think it was more so 5 or 6).Things were not looking as hopeful has they had a week earlier.

I had been fitted with a PICC line, that ran up my left arm to my heart for IV meds. A week after the cartilage insadence, just when things were starting to calm down, my arm began to swell. A scan revealed I had a DVT. If that isnt bad enough, I am allergic to the meds used to treat blood clots. I was started on new meds that nobody had heard of before and the line was removed.

It was noted that one of my eyelids had dropped and that my pupils were differnt sizes. I was diagnosed with Horners Syndrome, caused by damage to one of the nerves in my neck.

One morning, I somehow ended up getting my IV line flushed with salbutamol, a med that is usually only given as a neb. My heart rate spiked to 210 and I spent the following 24 hours on a heart monitor.

But, worst of all, out of all of that, was I developed Surgical emphasisma. Now I am no stranger to that, it is where air is able to leak between the layers of tissue in the skin. It causes swelling in the skin, that when touched crackles almost like rice crispies. I have had it before, but this was serve. It ran from my waist to above my ears. It swelled one of my eyes closed. I wasnt allowed to lie down and it was very painful. I had all my painkillers increased and was put back on the ketamine.

I was really begining to struggle to breathe and so, while I was awake, on the ward, one morning, I had a mini trach inserted into my neck. The following morning it was switched for a regular trach. Never have I had them put in while awake. It was quite the experience.

Surgery had to be held off because of the surgical emphasima. Breathing was still hard and I found my days filled with sitting still, whilst on oxygen and running so many nebs that I dont know how my lungs didnt swim out themselves.

Eventually I went back to theatre and things mainly looked swollen. But the trach was secured and for now, I breathe through a 7mm hole in my neck, that gets clogged because of my chest issues. Things are not very comforatable and we have no idea if the surgery will work at all. My orginal trachea had to be cut open with a bone saw, which is very unusual, the first time my surgeon has ever had to do it. So it was a mess to begin with. So time will tell.

I also developed a Staph infection in my blood system. requiring more IVs. This was discovered the day the Drs were discharging me. It is a nasty infection that can wreck the heart muscles in a mater of hours. So I had lots of heart scans. I was, disapointed at not being discharged as I had become increasingly home sick. I had told my parents not to visit as i thought I was getting out. When I didnt, the days began to drag, with no visits to break them up. In fact the last couple of days, I spent trying to hide my tears as I just wanted to get home.

Mixed in with all of the above, were fights with nurses who wouldnt listen, meals out and take aways delivered to the ward, good friends visiting and making friends with some of the nurses, I gained the trust of a Dr who I never thought I would, he even talks to me now like I am human. 9 I have had issues with him in the past) and other Drs, who gave me hope again and made me believe, if only for there shifts, that things could still get better, that i could make something of myself again, once my breathing was fixed and to him I will always be grateful, he lit a torch, in the darkness.

I saw some amazing sunrises.

Had the best picnics and time away from being a patient as possible.

And confirmed what I already knew. That I am under the best possible surgeon and the best possible team. Even if this never works, I will be forever grateful and in debt to them for there amazing skills, compassion and understanding. Not to mention their ability to not scream in frustration at the 10pm ward call they would get most nights for me, to fix broken cannulas, or if I had thrown another temperature, or coughed out some more cartilage. I am also thankful to the people who visited me and kept me sane, the ones that sent me gifts and those who well wishes I received via snail mail or online. I am a very lucky person.


  1. I admire you so much for the way you deal with all that you have to go through, it seem just to much for one person. you are in my thoughts and prayers

  2. I'd been worrying about you when there were no new posts. Sounds like a horrendous few weeks for you. Take care and hope things improve.

    PS - where have the photos gone? I can only see the photobucket logo :(

  3. Holy smokes girly!!! What an awful time you've been having, and yet you are still moving forward with gratitude for your team and hope for what your life has the potential to be! I used to pop in and out every couple of days to see if you had posted -- glad to see your newest entry! Take care and fingers crossed for all the best, best results you and your doctors are working towards!