Capped

Last night was difficult. I was without my night time meds so sleep took a long time to come. It eventually made its appearance around 5am and I was awoken at 7am. Yet, I slept. I slept for 2 straight hours. That might not seem much, but I dont think I so much as coughed during those 2 hours, that on its own is a miracle. What is more, I was comfortable when I slept. I slept on my side and lying down, something I have not been able to do for the last couple of weeks. Things felt differnt.

The sun was coming in the window and though it was early, it felt warm. My NG tube position was finally confirmed and I was able to have my meds. Nurse did my obs, all looked good.I felt more awake than I had done in weeks and was up and moving to the bathroom within 15 minutes of waking instead of the usual 30 minutes it usually takes to gather myself. The nurse asked how I was and without thinking I spoke. Then looked shocked when I heard sound come out. Not my tiny whicper I could barley hear from yesterday, but a deeper, huskier voice, still quiet, but louder than it had been the last few weeks. Things felt positive.

I was still tired, so dozed a little in my bed. Finally the lady came to do a swallow assessment. I must admit, it was one of the worst assessments I have ever had. No fancy cameras or blue dye this time. Nope. Here take a sip of water, does that feel ok? yes. Here take a bite of cake, does that feel ok? yes. Ok I will put you down for normal diet then. How simple was that? pretty sure I could have done that myself, the day before and saved a heck of a lot of hassle. Anyway, from then on I was allowed to eat and drink and get my NG tube out. Heaven.

At 1:30 doctors came to switch my tub to a fenestrated one (with a hole in the top) They then caped it (basically covered it so i couldnt breathe out of it) and told to call the nurse if I had any issues and that my oxygen levels would be checked hourly.

The first few minutes were truly awful. I thought this is never going to work. I cant catch my breath. I knew I had to keep trying. My hands wanted to rip the cap off, to take a big lungful of air through my trach, but I knew that would not get me anywhere in the long run. I needed distraction. I text a friend, who offered that distraction. Urging me to keep with it, to rest, to breathe. I tried my voice, it was there just. Still quiet and still husky. Dad has sent me a message, in his typical sarcastic comment, so I thought what the hell, lets make a phone call to my mum. I have not made a phone call in the last 6 months. She answered, she could hear me, just about but not very well. She was on the way into the hospital with my dad.

Still working on distracting myself, I played a game on my ipod and kept texting my friend. Breathing was still hard, but getting a little easier. Mum and dad came bounding onto the ward all smiles. Even more so when I spoke and mum could actually hear me. I was able to explain where we were up to and what the doctors had said. By this point I had been mouth breathing for about 20 minutes. Dad went for a drink and mum made me phone my sister.

She had been driving at the time and when she saw my number on the phone she stopped in the middle of the road. I tell you, its a good job I am already deaf as when I spoke she squealed so loud down the phone. The distractions of my parents where helping me forget about my breathing as where the texts I was sending.

Its weird to think that you can breathe two ways, but it was possible and my habbit of the last 10 months kept trying to make me breathe the difficult way. Physio came to see me not long after that. Listened to my chest, said it all sounded clear, which is a positive, though the bottom half sounded a bit dull so I needed to work on my deep breathing. She then took me on a lap of the ward. 

Wow, I was blown away. The past couple of weeks, I have slowly made my way around the ward gasping and spluttering and sitting back on my bed for 10 minutes to catch my breath. This time however, I walked an ok pace, with drip stand in tow. I was walking so fast for me, that I kept kicking the drip stand and I never usually have a problem navigating them. When I got back to my bed, I was breathing normal, no panting, no gasping no desperate need to sit and still my lungs. It felt wonderful.

I walked to get my parents from the day room and stood there talking, yes standing up and talking for about 30 minutes. Things got a little emotional but I was over tired and my mind was going into meltdown. I then walked back to my bed and such. I was literally shaking with exhaustion, but no sign of breathlessness. I coughed and it came out of my mouth, yeah sounds gross, but when it hasnt done that for 10 months, then it is a huge thing.

At this point, I was now about 2 hours from being capped and not had my oxygen levels checked yet. The nurse came over to remove my drip. Ideally they wanted to leave the needle in for a little while longer, but my hand and arm where it was placed had swollen to twice its size. Fluid leaking under my skin, therefore no reason to leave it in place.

My trach got a nice comfortable dressing on it and my sats where checked. 96%. That is pretty awesome!!

Soon after my friend came. She was excited to hear me speak and getting back from the bathroom without the gasping. She also commented on my lack of cough. She has been witnesss this last week to my horrible, painful cough. Mum made me phone Alison, who told me I sounded like a man and the burst out crying on the phone.

Mum and dad left, looking a lot happier than I had seen them in a while. I was able to have a bit of a natter to Cam and then ate my tea. We then went on a walk around the ward again and sat outside the ward talking for a bit. Actual real spoken conversation. It was bliss. I have missed my voice. Again, she was impressed that I was able to walk without gasping, having watched me get worse the last few days.

Right now, I am running a nebuliser through my mouth. (my throat is still a little dry)

It has been 10 months since I last wore a face mask. Every part of me aches right now. I am tired beyond belief. The last 36 hours have been physically and emotionally draining. But it now feels like it has been worth it. To talk, to breathe, to walk without all the discomfort. Its just so amazing. I am breathing better than I have in 12 months!! My voice is slowly getting stronger, though my throat aches from not being used to talking.

There is so much more I want to add. About looking to the future, about adventures and about freedom. But not tonight. Tonight, exhaustion takes over me. It is time to snuggle down into bed.

If my oxygen levels stay ok through the night and tomorrow, at 1:30 (24 hours after being capped) I can have the trach out!! If my breathing stays ok for a further 24 hours, I can go home.

Go home, trach free, tube free, plastic free!

Oh the joys this can bring.

No more medical equipment, no more machines and no more tubes.

I know this isnt the end of the road, I know there will be more surgery to tidy things up and keep them clean. I know there will probably be bumps along the way. But I feel, right now, I have reached a turning point. I have reached the top of the hill so to speak. (speak, theres that word again) The rest, compared to the last year should be easy.

A step in the right direction.

Life restarted, no longer needing to be on pause.

I go to bed happy and positive tonight. I go to bed shedding a tear, a tear of exhaustion and happiness and for what maybe. 

Heres for tomorrow. And continual easy breathing.