SSDD

I havnt posted in nearly a month. Its odd, I remember the days when I could post a couple of times a week. These days, the weeks seem to escape me. Its not that I dont note them, I cherish them and all I am able to do during them.

I guess my lack of posting really began when I changed my nebuliser machine and had more medication added. I used to be stuck on my neb for hours, so used to type whilst on it. Then I upgraded my machine and it was wonderful, as I spent a lot less time on it. However, the downside is that I have to hold the 'mouthpiece' whilst it is running, meaning that I only have one hand, making typing difficult. I also had my meds changed, which leaves my hands very shakey, again not ideal for typing. But all that aside, I needed a break. This is the area that I use to get things out of my head, to work things through in my mind. Yet, I didnt want to always be posting the same things over and over.

But the truth is, that is all my mind is focused on. There are times that it slips away for a moment, but it back the next time I move, the next time I cough, or when the post comes with yet more appointments, its all back in the fore front.

I met with my surgeon a couple of weeks ago. I wanted the truth, the whole truth and nothing but the truth. I told him that I was getting tired and my hope was running seriously low. For months now, we have been doing monthly laser therapy. This means traveling to London (200+ miles each way) and checking in on Monday afternoon. There is usually an array of tests, just incase, bloods, xrays and other such delights depending upon my obs, such as ecgs. Tuesday morning, its up, showered, and changed into surgical stuff. I see two members of the anesthtic team and the full ENT team before 9am. At some point during the day I will be taken to theatre, where I will undergo a general anesthtic (full knock out.) This can last anything between 30 mins and 3 hours depending upon what they find, though I also ended up with the anestitst for about an hour whilst they dig around trying to find veins. I then spend the rest of the day back on the ward, usually with higher dose painkillers these days due to the damage and some oxygen to try and clear my system quicker. Wednesday morning I get my results and see the regular ENT team about 9am. About 10am my consultant usually comes to discuss things further. And once anti biotics have been decided upon and I feel up to it, I begin the hike back home, through central London trying to avoid peak hour on the trains. For the next 5 days, I am pretty sleepy and not really with it, reallying a lot on painkillers once again. After that, I begin the downward spiral as my airway builds up where it has been lasered.

Its not an ideal cycle and I find that I get very little benefit out of it.

But my surgeon confirmed, that right now, we are getting shorter and shorter on options. The usual procedure that has a 99% success rate has failed me 3 times now. The experimental surgery has not helped at all and taking any more rib cartilage is out of the question now as I get server pain at times where they have taken so much. Over the next 10 years or so, that may ease off, but its going to be a slow trek.

So where do we go from here? and how much am I actually up to going through?

If we stop lasering, my airway will close up. I will become more and more limted in my ability to do things, eventually setteling at a point where I would be breathing through about a quarter of my airway. But, pretty soon after we stopped the laser, I would lose my voice. I have done short periods with no voice and it is hell. The simplest of things become impossible. Ordering drinks at the bar, buying stuff in most shops, conversation, shouting for help.

But what is the alternative?
My surgeon is talking about trailing some stents to hold the airway open. I have tried them several times, the last time nearly killed me. My body scared up around the stent and I was found in full resperatory arrest, waking up several days later in ICU to find I had narrowly escaped without brain damage. Every other time, I have had them, they have caused major issues, many prolonged stays in hospital, many ICU visits. Am I up to trailing them again? Can I cope with a prolonged stay in hospital? It was only September that I got home from a 3 month stay, if that happened again, what then? I love the staff in the hospital, but its not home and there is no real conversation, especially when everyone you know are still miles away.

I have tried talking to my mum and such about where things are at. The hardest part, I cant seem to make her understand where things stand. She seems to think, that I should just quit the surgeries for a few years until technology is more advanced. But without surgery, things will get worse until I eventually cant keep up.

My body is already complaining. Almost constant lung infections, are taking there effect. Flying now causes my lungs to bleed. Luckily its only small bleeds, but it each time seems to get worse. And the last thing I want to do is damage my liver with too many antibiotics and having to spend weeks on IV meds.

So, whilst trying to decide where to go now, searching for another miracle, all I can do is make the most of what I have. And I have been trying so hard to do that.

Last month I went on holiday with a friend abroad. Tonight, I have just gotten back from another holiday abroad. I am spoilt and truly luck to be able to do all that. At weekends, I make the most of being able to spend time with my niece. We do simple things together, meals out, cinema or just curling up on my bed together and watch tv. Such simple things and yet they bring so much pleasure, comfort and happiness. I truley treasure them, even if it takes me a few days to recover.

I meet with friends where possible and I am making plans for the next few weeks, for christmas, for birthdays and for future holidays. All of course, going around the admissions.

And so, though I may go on far to much about the same subject, right now it effects everything I do and yet there is no escape. But that is not to say that I am not living. I am eternally grateful to everyone who has helped me get to this point, the medical people, friends, family, donors, researchers. I know that I am lucky to be here and believe me I do know it.

Hope

Another quick one unfortunly/hopefully. I have to be up at 5 am and the only reason I am writing now is because I am running treatments before bed. Plus I have a migraine so more reason to sleep.

I was a little delayed getting out of hospital. By little I mean I mean about a day and half. I felt like crap the day I was supposed to come home and though I knew I could make it home and then sleep, pharmacy messed my prescription up. So by the time that came, I was a little wound up, it was getting dark and I was tired.

Actually, at one point I did leave the ward for an hour to hide and wrote a kinda depressive entry on my phone. I will see if I can get it to post in a bit. Things were just winding me up. I was in with a person who has a similer issue as me, but with a better outlook. She was last in hospital 3 months ago. And well, as this is public I wont write much, but you know how you can try so hard to keep your health going and then other people who are polar oppossites end  up just irritating you. Well yeh.

So anyway, I stayed an extra night to refresh and such, but that of course meant less time sorting things once I was home for going away. So I am a little stressed out right now and kinda functioning on auto pilot. Hoping that the time away with plenty of rest will do me good. Though still feeling a little ill, but I have paid a lot of travel insurance.

So whats next. Well, on an up note, my surgeon and I have made a new plan and I am fairly hopeful for it.

About 2 years ago one of the first operations my surgeon performed on me, was called a tracheal resection. Bascially what they do for the resection, is they take a piece of cartilage from between your rib bones and shape it. They then insert this into the trachea to open up the airway more and cover it in skin grafts. Right now, that bit of cartilage is still in my airway and doing a ok job.

Now the problem is, if you feel between your rib bones there really isnt much cartilage there. It is very painful to take and has a purpose of allowing your rib cage to move. This means they can not take too much of it. This is were the complex bit is going to come in this time.

The plan is, to take the cartilage  as much as he thinks he can safely get away with. He is then going to bury it into my my left arm and attach it to a blood supply. The hope of this, is that once the cartilege is in my arm, it is safe from infection, but it will have room to grow bigger, allowing him to open my trachea up more. Its complex. It obviously involves multiple areas of surgery and a heck of a lot of pain. But pain can be managed and hopefully, with the extra cartilage  my airway can be better supported and I can breathe and talk again.

Thats the plan anyway. I am not sure how long my arm will need to house the cartillege, but hopfully it will go in to place at the start of December. That gives me time to do my 2 holidays.

And it is of course hope. I may just get through this and if not, perhaps it will buy me a little more time until transplant becomes an option.

Its big, im not saying it not, but it is worth the shot.

I dont think I will ever be able to express my full gratitude to the team in charing cross. From the surgeons, to the anesthtics the nurses, the assistants. They all keep me strong. And I have confided a lot in them this week. This week was a tough one. I was honest about a lot of things with some of the staff, before I dont think they realised where things were heading. There are some staff that go way beyong there duty, be mugs of hot chocolate at midnight, hugs when you look down or even a text. On one of my rough days, one of the nurses had exchanged phone numbers with me, I often talk to her and visit the ward to see her if I am in clinic. She told me that her and some of the other staff were always blown away by my bravery on the ward. How I face everything head on, make the most of it and manage my symptoms the best I can. It probably sounds cheesy and silly, but right that night, it was what I needed to hear. It helped me face the long night ahead. As I say, I dont think I will ever be able to fully tell the staff how much they have all meant to me.

So a plan is in place.
Things feel good at the moment.
I am looking forward to some time away from everything.
And to add to boot, mum finished chemo last week and today she got the all clear from her bone scans as there had been a worry that she had some secondaries. But its all good.

And for now, see you next week.

Fear

I havnt posted much recently. I guess I have been getting on with life.
Not to mention trying not to complain as much. I have things pretty good, I know I do and believe me I am thankful for that.

But then, there are times, when I know how lucky I am, but I also know something isnt right. But I worry about seeking help, incase I am wrong, that things are fine and I am over reacting. I know I have written about this feeling before, but at time like now, the feeling gets so overwhelming. I know its ridclous and that doctors trust me, but learning to trust myself is a whole differnt level.

Right now, I am on antibiotics again, as I have 2 sets of infection in my trachea/lungs. Staphylococcus aureus and Streptococcus. But right now, breathing is tough. It feels like I have something stuck in my throat, other than the obvious metal tube through which I am breathing. This means, my breathing is hard, restricted and noiesy. But here is where it confuses me, I can kinda breathe around it, as so to keep the noise down, but sometimes, I cant and thats when it gets scary.

The video, is more for my record, but you get the idea. Its just regular breathing.

So, I have clinic on wednesday. And one part of me says please let it be nothing as I dont want any anything else to go wrong, while the other part of me says, I hope I am not exagerating and that there is a genuine problem. While the other part of me that comes out when things get scary, says, please admit whilst I am down there and sort this out to stop it being scary.

I think in conclusion, that we can see that i get scared easy. Im scared of my own body and that sucks. But deep down, I dont want to show my fear, and so I only want to mention genuine problems.

So this is me, addmitting, that the world can be a scary place and that my mind is a bit of a mess at the minute, but I have not given up.

One day at a time.

Life is changing, evolving, growing.
I need to change my priortise.
I need to work out what is important.

I am still might against the trach, but perhaps if I give it a chance, it can work out.
I must admit, it would be nice to not spend so much time in and out of hospital and theatre.

I am also not in the same position that I was last time I got one.
It was a sharp wake up call when my surgeon close to home reminded me of that this week.
How last time, things were desperate. There were a lot of close calls.
As he put it, I was very ill and very weak.
I worried him a lot and scared the heck out of him when I would drive to college despite being to breathless to get a full sentence out.
As he said, we dont keep people in ICU for weeks at a time for fun.
And not many patients stay under ward care for 5 months.
And as we joked, not many patients would get the privalage of the hospital staff seeking his advise at a 3am.

I am strong and in so many ways. This is going to be the turn around.
It has to be.

I am still putting a plan B into place though, which may still back fire, but is a risk I think I need to take.

Right now, exhaustion is setting in. If i am active for more than say 30 mins, I get so exhausted that I just want to sleep. Im aching from coughing also. But I am not as restricted as I thought I would be. Although it is tiring, I am still able to do jobs without feeling like I am about to collapse. This is all positive. This is all great.

I am spring cleaning my room and sorting my wardrobe out, to make things easier to, so I hope to get that done soon. It would be nice to see my floor once again.

One day at a time.

Christmas and birthday in one.

Yesterday, I celebrated christmas with a friend. I even got a stocking yay.

We watched Elf and had a roast dinner and a huge pud.

Yes, that was taken about 10pm and yes we are still in out pjs.
It was also my birthday, so I got to do 2 in 1.
It was fun.
Until my friend pointed out that I am no longer mid twenties, but in fact late twenties nowI am 26 eek, where did life go.
Which wasnt so fun.
But its all good as she is still older than me :)

Today, I go back into hospital ready for theatre tomorrow to remove the stent. the sooner the better is what I say. This has shown me, that my body still dislikes stents, even if they are covered in my own skin grafts. I literally havnt stopped coughing for days with the squeak of my breathing waking me frequently, whats more, what is coming up, is disgusting even by my standards. Not to mention, that each day, I feel a little more restricted in what I can do and even changing postions at times curently, can leave me with a quickened breathing rate.

But alas, that is still not my major concern right now. The scar from this surgery, looks pretty good. (Scar pictures with and without staples below, so feel free to skip)

For less than 2 weeks post surgery, I think thats looking pretty good, however, I have developed a slight swelling above it and my neck just looks hugely think.

I guess its just a pocket of trapped air, but it does change size throughout the day. But if I turn my head in certain ways, I get the feeling of pressure on my throat, where I swallow. More oddly than that, and something I am still unsure how it corralates, but if I turn my head slowly right, I get another pressure feeling, in the midst of my chest, close to my heart, as if something is pushing on it. Its all very odd and probably absloutly nothing to worry about. However, that does not quite relieve the feeling of anxiety that comes everytime I move my head and my heart feels odd.

Back to Charing Cross in a few hours, where I am sure they will just laugh and say its to be expected. So here is to the hope, that within the next few days, I come away with a normal airway once again and no longer feel that anxiety nor the worry of being face with an incline to walk up.

And as I write, I am currently laughing at my friend who is looking like a DIY expert trying to build furniture hehe.

Free

I still stand by my last post, but the last couple of days have really tested those feelings.

I awoke yesterday with the worst migraine I have ever had. I went from being fine to not being able to open my eyes within 5 minutes. Dark and quiet on a hospital ward is impossible. I took the painkillers, blocked my ears and burried my head under the pillow. Doctors came for ward rounds and I particpated with my hands over my eyes, only opening when I had to. After more meds and drifting in out of sleep, I was thankful that the docs had given me plenty of nausea meds, the thought of retching, while my neck was still held by staples terrfied me. 

By mid afternoon, I began to lose the pain yet still felt rough. I ventured out for tea as my parents were visiting, but I didnt cope very well with it and spent most of the time trying not to pass out. Both perantels noticed that my breathing was worsening, which says something, but I kept hoping to put it down to having not moved as much in the morning. I doubled up on all my nebs before snuggling up in bed.

I actully had a great night. There is something to be said for sharing a bay with 3 like minded people, all 3 of you wrapped in blankets, sipping hot chocolate and just having a good old joke. I laughed so hard. They were amazing people, same mind set, all been through hell, yet able to smile and yell whats next world.

So they decided today, I will be going back to surgery next week to get the stent out, so it was upto me, if I wanted to wait in the hospital or go home till then. I opted for home. I think that choice maybe harder than first thought.

So tired. I went up the stairs too quick when I got home without thinking. My sats dropped to the low 80's, but I found myself curled up in the fetal postion on my bed. It felt like I had a knife going through my heart. The pain was agony. I must remember to slow down.

Its so differnt getting my head around this. Usually after a big op, I have the whole adjustment of a trach to add in and it takes me about 2 weeks to begin to feel human again. This time I had a mini trach that was taken out after 24 hours. There was no adjustment and by 4 days post op, I was itching to get out and could not understand why I was still on the ward. I felt great and I felt more like I had had laser than a big op. It wasnt until I began to feel rough again, that the nurses kept reminding me that it was normal to feel rough, I had just had major surgery and a spell in ICU. I was taking to much for granted.

So I am home, and I need to keep reminding myself to slow down, to rest and to try not to let this fear get the better of me. Its ok for things to be hard now, it dosnt mean things have not worked, when the stent is out, things may get better. I am not going to have the same issues with this stent as I had with my last stent. Its less than a week, in less than a week, I will be safe again. I can do this. It is so worth it.

Just keep swimming

Today is a bad day. It is one of those where I feel like I fight for every breathe. The heat isnt helping.

Yesterday, I had promised to spend time with mum and take her out, which meant getting up in the morning. We had a good day. Went to a shop with a garden centre type thing and craft centre, so we were able to split up and both get something out of it. We then had a picnic in the car overlooking a lake.

We were watching a swan with 9 babies. That must be hard work.

I got a lovley bed spread, that I am dying to put in my room, but I wont until I get to tidy it properly.

Last night, after tea, I sat on my bed with my laptop as I normally do. Now normally, I browse around and catch up with people till about 1 am ish. But not last night. At 7, I found myself falling asleep. I meant to sort out my tablets and run my neb an such, but literally had no energy. I must have fallen asleep as my dad came up for a shower at about 9ish and shouted to ask if i needed the bathroom. I literally crawled to the bathroom, tipped my meds down my throat, turned on my humidifier and collapsed back to sleep, not fully waking till way after 11:30 this morning.

I was literally dead to the world.
Unfortunly, I still feel exhausted and my lungs are shouting at me for sitting still too long, Every breathe is makes my lungs burn and I know I am avoiding using the bottom half. My shoulders ache and ribs sting.

I am doing all I can Lots of nebs, antibiotics, lots of fluids. I have spent the last hour on my bed, nebs on full, humdifier on, fan on. It is exhausting. I want to stay in this position for the rest of the week. Not have to move. But alas, there are things to be done. And I have to be social tonight. So instead, I shall take the painkillers and hope that they wont sedate me to much. And hope that the antibiotics kick in soon.

And that, they can hurry up and change my diagnosis from suspected, to confirmed. Not that I want to have any type of lung issues confirmed, but perhaps, once they are, we can begin a treatment plan. Get rid of infection every other week and stupid breathing crap. I am booked in for a high contrast CT next week, so perhaps that may help things.

Maybe I should just quit complaining at this point. I mean, I moaned last week that I had a mans deep voice, but this week it is little more than a squeak and very hard work to get out.

And apart from that, I just need the ability to explain things to mum. That yes, there are things that need doing, but just like when she is on her bad week and is unable to do them, I to am at that point and unable to do half of what I need to. Its so frustrating. gah.

A whole lot of YAY

I have a new toy, that I have completly fell in love with!

I had some vouchers and money coupon thingies, so I bought a Kindle! And I must say, I have fell completely in love with it!

Yes I did my research first, and it was a kindle I decided on as it is much clearer than any other ebook reader. I do love my books and the smell of them and the feel of new paper. But the kindle, is just going to make things easier. It can hold thousands of books. So when I would normally carry one for a short hospital stay and 3 for a long stay, this is smaller and lighter and I can take as many as I want. Its also easier to read in bed and yeah. So this is me happy :)

I also have a smurf tshirt, which just makes me far to cool!

Ah, theres not much new in the life of kim at the moment. I have been tired, but I think it has more so been down to being active. Mums chemo seems to be hitting her harder this time. And she is too exhausted to do anything by the afternoon (though she spends the morning doing silly stuff which is getting a tad annoying) This means, that most afternoons/evenings, I have been catching up on the shopping/cooking/paperwork etc. Its not been to bad as I have been able to do it at my own pace, I find by 7:30, I just feel whacked out. So the plan now, that I am trying to get in, is going to bed earlier. But its easier said than done, as I like my nights. I like it when the house is quiet and I have nothing I need to do or think about. I can just relax and do what I like. But I am going to try and go earlier.

As for breathing. Things still seem to be going good. I have had a couple of bad days, where I had an angry rage/cry to friend as it was hard and I was at the point where I was planning on begging them to put the trach back in. (that should tell you how bad that night was) But I have also had good days. Ok, not where I should be up to, but better than I have had for a few years. So, its all pretty good at the moment. Though, I guess I havnt been as pushed as normal. Normally I have to keep up with others, but as I am runing things, I can do things at my own pace.

The time when it was hard, was the other day when I had to be out for certain time and suddenly things were hard. I still had to do things just as quick, but it was scary, all the old feelings of not being able to breathe and worrying about what comes next and how I will get through what I need to. But for now, this is positive and I am going to hold onto that.

Just think, if this carries on, in a few months time, things could just be amazing. If I saved up, I could probably afford to go back to uni, at least comptly one course. or even scrap it an just work. At the moment its still a distant dream as I still lack the energy. But it is all possible. The hope of it is keeping me going right now.

And more so, I am going to London on Monday for clinic. But this means I get to socialise with a friend. Which is yay. And I can do stuff, as I can breathe. So yay for that too.

one hospital then another

Right now, I feel content. I have no words describe it really. I spent the most part of the last 8 years filled with hate and anger towards myself and projecting it on those around me. But right now, that part is buried. Dont get me wrong, I know it will be back, but for now, I am enjoying the calm. The small things make the biggest difference.

Simple tasks, such as making something pretty, buying new colouring pens, playing with my niece, reading, baths, hair dye, the closer bond forming with my mum, the chance to occasionally feel useful, to pay some hospital time back. Its like a big warm blanket is wrapped tightly around me. And for now, I am managing. For now.

Today, though, has been a long and tiring day. At 9:30 this morning I had an appointment with my new respiratory consultant. I like him, he seems down to earth, or perhaps it he was more honest after having a refferal from one of the top thoracic surgeons in Liverpool.

Anyway, long story short, he is curious as to why I have so many infections in my chest and he would like to see how my lungs are now. So, we are going to run a load of tests. First off bloods, which were done today, testing for some lovely fungus and allergy type things. He said my chest sounded clear, but askedfor a sample of what I was coughing up to send off. From said sample to send off, and the fact that I had a major sore throat this morning (never a good sign) as well as my saying I think there was something currently in my chest, he gave me antibiotics too. But, and this is where I like him already, it was a 10 day course! Most places only give me 5 or 7 days, which hardly does anything and I end up needing a second course. So he has my trust already ha.

I had to have a spirometry test (urgh)
FVC (forced vital capacity): 3.54
FEV1 (forced expiration volume): 2.16
PEF: 2.48
Which give me a a lung function of (drum roll please) 61%
Not bad I guess, but yeah.

He is also sending me for a repeat CT scan. The one on file is from 2009, so he wants to compare the condition of my lungs now. On top of that, he is sending me for some gastro type test thingy (there is a condition common in my dads side of the family of lungs developing holes) And he will call me back to clinic once he has the result from there. I think he is also thinking of trying inhalers as he asked me which ones I have had in the past. And then asked about steriods and if pervious ones had helped with my chest complaints. I told him that I couldnt tell him a good answer to that, as the times I have had them, were when my airway was really bad, which would also effect my chest.

So yeah, as far as first appointments go, this one went ok.

And then we dashed off to another hospital for mums second round of chemo. Which took forever. They tell you it will only be an hour, but it was more like 4 hours. Mum dozed in the chair while it was running and I struggled to stay awake. Sorted out both of our prescriptions whilst we were waiting.

Came home at 4 and I fell asleep for just over 3 hours. I was dead to the world as well. But, this is where it gets frustrating. Mum is going through worse treatment than me and yet she had to sort tea as I was out of it. I do feel guilty about this. She knows I help when I can and so dosnt mind me sleeping, but I still wish I could do more.

still going

oh wow a day time post :)

Right now, I have that horrible feeling in my muscles of exhaustion. My brain feels a little groggy, like it wants to sleep some more, but for now, I think its time is had some awake time.

So from that you can gather that I am still breathing! yay.
And its great.
Ok, thats a lie, I think.
Its not great in the sense that its not like average joes breathing, for example walking and talking at the same time is still a problem, but it is great in the fact that it is better than when I had the trach in. I can even get though most of the day before the headaches crash in. And to have all that, with no tube hassel, well its pretty amazing to be honest.

Then obviously the million dollar question comes into play. Does that mean the last surgery worked/helped? Its a difficult one. I find it so hard to judge what is good and what is bad. Like i say my breathing is wonderful, but that is only compared to the crap I was used to when I was 70% blocked. It is better than just before I went for my last big op, but then, when I had the big one before it in August, things were even better to begin with. I was breathing great then, peak flows up in like 350, which is only classed as mildly obstructed.

Before the last big one, they were down to 200 after laser and 120 before. And now? Well, they vary between 200 and 250.  I dont even know if peak flow shows anything. I know that in asthmatic terms, anything below 250 for my height/weight/age would be classed as critical and would earn me a bed in A&E. But I know that my system has adjusted a lot to it.

I also know, that right now, my chest brewing something. Its always disheartening to catch a glimpse of fluorescent goo and knowing your body just produced that. What is more, I only finished a course of antibiotics yesterday. Least it is confined to my chest. And is a million times easier to handle than if I were trach'ed.

So all good news. As for the exhaustion, it seems a little unrelenting at the minute, but then I did push myself a little too much yesterday. Helped mum with the shopping then visited my sister. My niece got a rabbit for her birthday and it is just the cutest thing in the world. Lays in your arms like a baby so you can scratch its tummy.  We bought a lead for it, as their garden is very open, so we were hoping it could go out to play, but not be able to leave the garden. To put it simply, rabbits dont like leads ha.

I didnt even come online last night, instead, went straight to bed when I got home. Now that is odd for me. oh wells, nothing planned for today, thank heavens. And mum is naping on the couch. All is well in the world, until next week of course, when we begin again with the whole chemo round thing. fun fun fun. which is actually another point, which may even help thinking now. Monday, I have clinic with my thoracic surgeon, but Wednesday, I finally have my refferal with the chest dude. By Dude, I mean top consultanty person. So perhaps that may finally move things along, and help to get these annoying chest bugs to settle down and stop jumping about in my poor lungies.

Emergency calls and almost disasters

Anyone who knows me, knows that I am not a morning person. I dont normally see the day before at least 11am. So, when I awoke this morning shortly before 7am, I knew something was not right.

Last night, I went to sleep as normal with my humidifier on and such. When I awoke this morning, something didnt feel right. Now my breathing often changes through the night, when the tubes need changing and such, so at first I just thought, it was something like that, until I reached my hand up my trach and discovered it was not there.

I must have had a bad night last night and fidget around so much that I pulled on the trach. I was meant to change the tube holder and such, but was to tired so, so left it for the next day. Instead, it had come lose.

I have had it well and truly drilled into me, that if the trach comes out, the first thing I should do, is try to put it back in, as long as the tube isnt completly mucky, as clean ones can be sorted once the airway is secured. Well, I did that, but, there was no chance of it going in, the hole was well and truly closed, thanks to my lovely  rapidly healing body.

Then came the  uh oh what now. So far, I had run on what was drilled in to me. I sat still for a few minutes, checking that I was managing air flow and it seemed ok. Grabbed my sats meter and checked them, again they were fine. Next came what to to do now. There was no way I could get the tube in, so if it needed to go back, it was going to mean theatre. That left me 3 options. London, A&E or my wonderful surgeon up here.

I got up and, after dancing on the squeaky floorboards, to try and slowly wake my parents up, I felt like a naughty child, I didnt want to wake them on the weekend and I dreaded them going into panic. But I plucked up the courage an woke them, warning them not to panic before I explained.

They rang my old ward for advice, who said to phone 999 for an ambulance. eek, no way I thought, so we agreed that Dad would drive me to A&E, so I went and got dressed. Within 5 minutes, the phone rang, it was the ward mum had just phoned, who said, if I was still breathing ok, to come over (I live right opposite the hospital, I can literally walk to my ward, quicker than an ambulance can get to our house.) It was close to hand over time and one of the ward sisters who knew me had heard my name and so rang my surgeon at home (bless him of a weekend) and he said to come in and be seen by his team.

And that is how I ended up with a surgical admission at 8am this morning.

They tried to reinsert the trach, but as I had found, it was closed. They were unsure what to do as they didnt want to damage any of the new areas. They booked theatre time and a team as a precaution and once my surgeon made it to the hospital (after several phone calls all morning) he reviewed me. His initial view was that he would like to send me back to London via ambulance, so he went to phone London and get their advice.

He rang them and within a few minutes, my big surgeon from London rang my Liverpool surgeon back from his mobile.

They are now in contact with each other and I am being monitored. Technically, I have been admitted to my hospital here, I have a bed that no one can touch and the ward staff and emergency staff have all been briefed on how to handle things.

However, as I live so close and I am sensible, I am free to come and go as I please. Basically put, I am going to be at home, unless there is an emergency, until ward rounds on Monday when we will review things.

So far, my trachea is holding itself. I can breathe fine, not brilliant, but probably about the same, maybe a little better than when I had the trach in. The hope is that I remain like that for the next month at least and I get to remain trach free (YAY)

If things start to get harder then I go the ward and get the trach back. But fingers crossed, that isnt going to happen.

So an exciting day was had by all. ha
That makes 4 different hospitals, I have been at in 3 weeks ha.

But, fingers crossed, at ward rounds (Yes I have to be up mega early for ward rounds haha) I will be discharged and trach free ha. Maybe not how I was expecting to be detrached, but there we go.

I was going to stay at my sisters house last night, bloody good job I didnt hehe.

This week has taught me a lot. It has taught me, that it is ok to ask for help. It has given me a lesson in patience and that no matter how much I think I know my body, there is always room for surprise.

The journey home from London completely and utterly wiped me out. I knew there would be reprcussions from the feelings I had in the train station, yet they still shocked me when they came around. I literally couldnt move for the first couple of days home. Walking from one room to the next was a challenge and focusing on conversation was just too much. I slept through the night and would go for a nap in the afternoon. But with each nap, I would need to be woke about 4 hours later with some force for I was in such a deep sleep.

I was going to an appointment the next morning with my mum and reaslied I wouldnt have time or energy for a shower before I went, so I decided to wash my hair in the sink under the tap. (Yus this is something I do semi frequently, usually to avoid getting red splodges up the wall or when I have a trach and fear  showers) By the time my hair was rinsed, I sat on my bed with a towel wrapped around it and just didnt know what to do. I had a list of things that I needed to do. Change my dressings, take my meds, run some nebs, set up humdifier and dry my hair. Just the thought of moving made me want to cry as I just did not have the ablity.

Luckymum came to check on me on the way to bed and saw me biting my lip trying not to get annoyed. She helped me set things up and dried my hair and such. But that just felt like such a huge step back. After trasnplant, I fought so hard to get back to the place of being able to be independant that I swore I would never get into that postion again, I swore lots of things, but that and never using a wheelchair again where my two big ones. I went back on the wheelchair one last year but needing help just to get by,or just to run treatments, was a big one.

Since, things have improved a little and I am now able to keep on top of my own care once again. However, I am still taking 4 hour naps in the afternoon and generally finding things difficult. Right now, I have a size 6 trach tube in, this means I am breathing through a 5mm gap, so even smaller than just before I went in last.

Today I could have done with being rested and having that little extra energy, as it was Mums first Chemo session. It went ok, took forever sitting waiting, then about an hour for the drugs to go through. She has felt okish so far, but has gone to bed feeling sick. I imagine tomorrow is going to be much harder. But we will take that one day at a time. Though I did give her a big lecture the other day, about how she should go into it positive and none of this crap about how awful its going to be and how she wont be here next year. I said, you have had good luck, your 60odd and got to that point with relatively good health. To spend the next 18 months getting to a point of wellness again, in a lifetime really is nothing. She started going on about how she was old and cant deal with things being old. I said, well I would rather have goten sick when I was old and had my life to live, but grass is always greener huh. I think that got through.

I dont know. I know she has a lot to go through, but I also know my mum and know she works better on a tough love approach. I do love her and care for her, but right night, tea and sympathy will not help her. And this is where I am a little pissed at our GP. She has known my Mum for years and yet is really mollycoddeling her. You know, heres some sleeping tablets to take and dont go out shopping or do this or that. I still believe that if she had dealt with things orginally, rather than burrying them under sleeping pills, then the sleeping pills would have a much better effect now that she needs them.

I have a lot of ill feelings towards my GP at the moment, which is turning into an issue. For reasons I wont go into, right now, I can not bear the thought of seeing her,but I am getting to a point where I really could do with seeing a doctor. I just, cant right now.

Last night, I didnt sleep, not because I wasnt tired, but because I was in agony. Its another viscous circle. Because I am breathing through such a small gap, I struggle to keep my chest clear and cough the crap off it. In order to clear it, I have to cough with so much force. The force of coughing has strained all the muscles in my neck, meaning  right now when I cough, I am almost in tears and lying down, is agony. But if I dont cough,  I block up and need to cough even more fiercely.

I am taking the strongest painkillers that I have here, but its not touching it anymore.

Last night, I  fell asleep about 6am, with no humdifier on, because i couldnt stand the added pain of anything touching me, only to wake up again at about 8. I woke up disorintated. At first I thought I had been to theatre or something because all I could focus on was pain.A more urgent thought then kicked in that I couldnt breathe and so I quickly changed my tube. When I took the old one out, It was virtually compltly plugged, with perhaps a a pin head sized space through the middle. It took me about 20 minutes before I could focus enough to take more painkillers and about 90 more minutes for them to kick in enough for me to sit.

When my breathing goes crap, my oxygen levels stay fairly ok most the time, its the C02 that builds up and this had obviously happened for a while before I woke. The headache eventually settled about 3pm. I still dont know why my body decided not to wake me to tell me.

I am getting used to not being able to breathe, but the pain is making me grouchy. I cant find a comfortable way to sit, its just there, constant.

Home

Iam challenging myself to write a quick update.
My battery is about to die so I hope to post it before.

So, in short, Im home. (YAY) but not as good as expected.
Turns out, my body still wishes to be complicated and so I have home with a trach.
I shall explain more tomorrow.

Right now, I look forward to curling up in my own bed.
Every muscle in my body hurts, my lungs ache and burn.
I came very close to having a total meltdown more than once today.
And I need to learn my limits instead of pushing myself to the point where it gets dangerous.

Ah the joys. But I am home and I have feeling that todays efforts, will wipe me out for at least another few days

bed time.

Love and Green light

YAY.
So, after much doubt, I have been given the go ahead for surgery today!!

Yesterday was spent working the hardest I think I have ever worked on my body. It involved lots of fluids and rest. I slept for huge chunks of times, 4 hours at a time. Awakening for maybe two hours in-between. During sleep, I had my humidifier on and up as high as I could stand. When I was awake, I ran nebs continually, alternating between hypertonic and regular saline. I used the hypertonic more than I would normal like, as my throat is still a little raw for it. Physio exercises, and lots of coughing was involved. I was exhausted, but still got up through the night to run nebs.

And it paid off. Im not infection free, not by a long way, but my temp has gone back to where it should be, my pulse, although is still a little high, has come down again. My chest is clear and so I have been given the OK for theatre.

So, im washed and gowned and all ready.

Now the nerves settle in. Will it work? I know there is a risk that I will wake with another trach tube in. I hope I dont, but I have to be prepared for it. There is a chance that the tube will permeant, there is a chance I will get worse before better and there is a huge chance, that things will be just the same as they have for the last year.

But, the hope is there. The hope for better days, for things to work. My doctors are one step ahead all the time. Always new ideas there. They want me to live and I have a lot to fight for right now.

If it does not work, it will mean more surgeries, possibly much more scarier than the past ones, but I have not reached that bridge just yet. Right now, we hope this goes well. I have complete trust in my team.

And I have something to look forward to. My two nieces are coming to visit me. Yup, one is 18 and one is 11 and they are getting the train down for a few days to come see me. Im excited. In fact I am overwhelmed that they would travel so far at such expense just to visit. I am just speechless on the whole thing.

They say home is where you familiy is, so whilst I am stuck so far away from my physical home, having family here brings home to here. My parents did a surprise visit over the weekend too and my friend is still visting all the time.

Being ill frequently is a horrible thing, but, there are good sides. My family are not big on the act of showing love, but the little things when I am sick, prove to me just how much Love there is. There are a lot of people who would not be ok if I were not here and so I fight for them and I fight for the hope of better days.

When things work correctly

When things work correctly, they are much easier to deal with.

The whole mutual trust bond is begining to build on this ward now, I like it, it makes things much much easier.
I had it on my old ward and I swear it saved my life a few times.

Basically, my body sucks, and I can get pretty sick pretty quick, without showing any of the normal clinical signs. Such as going into respiratory arrest when my oxygen levels were still displaying at 100%.

Well, after the long addmission at my local hospital, they began to trust me and would listen when I said something was not right.

Now, I seem to have good relationships with the staff here. They know that my situation is complicated, but they have been more and more friendly the longer that I stay here. Most of the nurses when walking past my door either wave or shout in to me, same when I on the corridor. If they hear me having a coughing fit, they stick there head in to make sure there is nothing that I need. Often they hide in my room so they can have a gossip and such. It just makes a lot of difference. They also dont mind when I have people in past visiting or make the ward smell of take out he he.

But, the whole team have worked smoothly on this admission. Ok they often dont know what the plan is for me, but that is mainly due to me being complicated. But, for example, when I first got out of theatre, the pain team came to see me daily to make sure I was pain free and were able to change the meds, which doctors are often scared to do due to my liver and such.

There was also the dietician, the physio, chest team, plebotmists, doctors and other various people who have visited everyday to minimise complications. This has not been the easiest of tasks either, as I had a lot of reactions to the pain meds at first and even had to have an urgent nero exam doing. Which was amusing as I almost fell over twice walking in a straight line and the doctors face was hysterical haha.

so yeah, anyway.
Well yesterday, I told the docs that I had suspicions that my chest was brewing something. They sent of samples to the lab and told me to keep on top of nebs and physio, which I was anyway. This morning I felt worse and told them I was about 80% sure there was defo something there that shouldnt be. After listening to my chest and it being clear and I had no temperature, I was expecting to be told the same, just keep up with the nebs. But nope, instead they said, well you know your body better than us and your due in theatre Tuesday, so lets start you on antibiotics.

It was wonderful not to have to explain myself, or wait around while getting sicker. And I have continued to do everything I can to keep my chest clear. Using about 15 nebs a day gah. But now, I have my humdifier back, which has been wonderful.

So fingers crossed it is going to clear.
But I am doubtful. Despite my best efforts, there has been no lay off in the crap I am producing. Normally I get bad in the morning and evening but am ok during the day. Not today though. Whats more, the stuff that I am coughing, really stinks. (gross I know) At first I was the only one who could smell it, but others can now too. Which is disgusting and makes me feel so damn dirty. Unless I do some rapid healing tonight, its not going to be clear for Tuesday. I wonder how far this trust will go and if they would put me on IVs tomorrow in an attempt to clear things.

oh well, fingers crossed. And although I have been given day leave the last few days, I have decided that tomorrow, I need to stay in. My body needs all the energy it can get to fight this right now.

I would say here is to better days, but it has been pretty good days so far already.

33% and Grade 4 stenosis

Bright and early this morning my surgeon called me down to clinic, so he could have a look and see how things are healing. He seems to like to do this recently, as he has the scope equipment ready there so easily glance down. Place was so busy and squishy I thought I would end up waiting ages, but it wasnt to bad.

I saw him yesterday when he was walking past and I laughed at his theatre hat as it was bright green kids jungle theme. Today he sought revenge and laughed at my 'brightness.' Well, I was limited on stuff I could bring down, so, I was wearing my PJs,which are mostly bright and I needed a zip up jumper which the only one i had was pink plus my red hair. I just laughed, least I cant be missed.

Icky spray of lidocaine and down (or should that be up then down) with the camera ouchie. He my numb it, but there is still one bit that hurts like hell.

Said it looked good so far and has healed well. Then went on to say, but then we know your a good healer, now the chore is to get you to stop healing ha. So he wants to take me to theatre again next Tuesday and possibly take out the T tube YAY!!! Though he said I have to be nice to the other ENT surgeon as my surgeon wants to steal some of his theatre time mwhahaa. I think this will be ok, as the other surgeon seems nice enough and comes for a natter twice a day most of the time.

It also gave me a chance, with a voice to ask a few questions. I asked, how wide my airway was when he took me down last time. I know I was struggling, and so I was pretty interested to know where I was up to. Apparently I was at about 4mm. It should be about 12mm, so I had about 33% of the breathing capacity of what I should have. Now to go from 100% to 33% in 8 weeks, is a pretty big step. Now I know why my body and head where complaining of lack of oxygen.

I guess that is the lowest I have been outside of hospital. The only time I have had lower than that, was when my stent kept blocking and I had to sit in ICU as I kept going from about 40% to 10% in a matter of minutes. anything below 15% is unmaintable really. So basically, 15% does not allow enough gas exchange to keep you alive. So 33%, yeah, scary really, grade 4 stenosis.

Fingers crossed that is all behind me now!!

I also made a plea to my surgeon whilst I was there. I literally begged him, to never ever make me have a T tube permanently. He said he knows they are not very nice. When I said I was literally spending about 5 hours a day doing just nebulizers, just to keep it clear enough to breathe easily, he said yeah,but your tube is a bit unique and glued in in many different places using bits of skin to hold it everywhere.  Yeah, nice picture that drums up ha. But least he knows my hatred.


In other news, Bree has now passed fully. I said my good byes as best I could last week. She was declared brain dead and the life support machines switched off. At that point, well more so before then, I said my goodbyes type of thing. I knew that it was just a wait then, for her body to rest itself, but she was no longer Bree at that point. He soul, spirit and humor had already gone. Else, she would have had some way of making a lame joke along the lines of what you all moaning about, shape up. Rest easy hunny.


Oh also, I keep trying to comment on peoples blogs, but blogger is being silly and saying something like select profile first. Any ideas on how to fix this? Thank you

Is it a sign?

So, I was feeling pretty fed up the other day, but whilst a friend was here she looked out the window and exclaimed, 'Oh look, its a rainbow'

Its not very clear, but you can just see it coming down next to the London Eye.
Though, it was pretty dim and vanished within a few minutes.

Today, my mum has come to visit. Once she left, I glanced out the window and saw this.

Much bighter and bigger. But, it was almost a double rainbow, which you can see so much on the picture. There was the begining of a second rainbow underneath it. And of course, looking at a double rainbow I hear that guy from the viral video.



Which, even more so lead me to thinking of Pocket God (And yes, I still crack up everytime I play that game!) Pocket god, is on the iphone and is one of the first games I got years back. Its kinda like a sim game, but you get points for killing the people in certain/funny ways via a series of mini games. But they update it every month or so to keep up with trends. Really should get it if you havnt already.



Anyway, I went to effort of uploading the rainbow pics off my phone, so thought I would stick a load up at the same time. Come with me for a journey into the past week or so ha.

So, the night before surgery, I knew I wouldnt be able to eat again for a while, so i said i wanted something tasty and filling. I went to ZiZis yum. And ordered a Calzone.

Yeah, that thing was huge. And filled with tons of meat. Ermm meatballs, Bolognese, pepperoni, mozzarella, ham and tomato. It was a struggle but it did fill me for like a week ha.

So, the day I went in, the surgeons were busy and wanted me left till last, so I didnt go down till about 5pm. Want to know how I kept busy?

Cant beat a Disney colouring book. And yes, I do love Pro Markers, just wish they were not so expensive so I could get more colours. Black is the next one on my list.

And a friend called in for a natter while I was sitting around. She laughed at the netties the nurse gave me to wear for theatre. (Those who dont know what netties are, they are like disposable knickers made of net) I of course looked at them in discrace, like I usually do and declared that I wasnt going to wear them. So instead she decided she was.

I think they kinda suit her. Though, I think when she heard that super heros wear their underwear on the outside, she might have taken it a bit wrongly.

When I came around after theatre, I wanted to try and leave myself some messages ha, I wanted to jot down things such as what hurt the most and such so I could prepare for next time. Well as you can imagine, me + 10mg of Morphine + a touch screen= jumbled up letters that mean nothing haha. I realized they didnt mean much so instead, I took a couple of photos, hoping to kinda convey things. blah

I remember trying to take it, but I couldnt get my eye lids to go up high enough to see my eyes haha. Its strange though, as the colours seem right on it, but my hair looks so faded and washed out, yet it isnt anymore, its bright and its bold still (though i have roots)

This one was the same thing the next day

Its odd thinking back. Everything was so clear. Yet now, I only vaguely recall the first 3 days.

Yeah, I liked playing with my camera anyway.

Oh look, its dinner time. yum

I do have some more exciting menu pics, but I will post them up at a later date.

And the things you do when your bored. (though the nurses keep taking my pile of medi pots and putting themin the bin :( which is mean) Though maybe for the best, as I was wearing them as glasses last week on web cam to my dad.

Yeah, while I had no voice, my dad wanted to keep in touch, but his typing method is still find and peck, which is so painfully slow. So instead, we set up web cams and he was able to talk and i could type my reply. :)

Anyway, nuh night

I have heard there are troubles to come..

I had forgotten what it felt like to have hot, steamy water massaging your back, while surrounded by the sweet smell of soap. Everything forgotten, tension loosened and mind free.

Today, for about the first time in 8 weeks, I had a proper shower, standing up un-aided and without exhaustion.
Before today, I have been showering by sitting on the shower floor. I didnt have the breathe to stand and use my arms together and I couldnt tip my head back far enough to wash my hair without my airway blocking before. But today I stood, it felt good, normal. I didnt get out and collapse on my bed for a few hours. I managed to get dried and dressed straight off and comb my hair. In total it took about 30 mins start to finish. So much better than the 3 hours of previous.

My mind is whirling. Oh, the hope of being able to breathe. To take the kids the beach again in the summer, to run and play with them in the water,to sit on the sand without fearing of filling my lungs with sand. To visit London properly, to take in the sights, without having to worry about resting in between. To lengthy conversations, late night phone calls, singing away and having fun. Ordering drinks at bar without resorting to sign language and pointing. To feeling tired after a long day instead of a day of doing nothing.

I know this is not likely to be straight forward or a clear road, but this road has to widen at some point, it has to reach a conclusion. For now, I need to keep a future in mind. To top up my stores of hope. To have thoughts that bring a smile to face when I think back.

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!

Dare to Dream

I know that hope is one of the main feelings that can get you through a bad day. But if you get your hopes up only to be let down, is it safer to play each day by ear?

Yesterday I began to get excited. I went for a walk with physio and my sats stayed stable and high at 97%.  It felt great to be moving, at a decent pace and yet breathing at the same time. I also began to talk yesterday. I dont want to do it to much as I know that area of my trachea still needs to rest and heal, but it makes a huge huge difference.

I was torn, do I get excited? or do I wait and see. Inside, I know that it wont make that much difference as the T tube is still in and I have to wait till it comes out. But the hope was there. One of my favorite nurses came in for a chat before the end of her shift and we had a nice conversation. She asked me about the future and I replied that until things settle I dont feel able to plan my future. She was full of hope that this was going to work and I should begin to make plans. But I cant bear the thought of making plans and then having to cancel again like the last 2 years of uni.

I am glad I took this stand, as today, my body seems to be fighting back once again.

I have literally sat on my neb all day, yet still felt blocked at the same time. I even let the nurse use suction, which is a rare thing for me as I find it gross and dont like the idea of someone else dealing with it. But I let her, not that it got very far as things were still pretty stuck up.

Whilist my breathing today has still been good, it is nowhere near what it was yesterday and I have spent a large amount of time coughing my head off. With random nurses sticking there head around the door to make sure I was ok. I feel exhausted, even after sleeping most of the day.

So, here is to hoping that things improve once again tomorrow.

I am however begining to like this ward more now. I have gotten to know the nurses and I think they mostly trust me. Most of them are not that much older than me, if not the same age and I guess that makes conversation easier, though it dosnt stop me in my head turning it round and round doing the whole, that could have been me. But for now I am in good spirits.

One foot in front of the other.

Last night, I lost my temper on the ward, though it was more out of frustration than anger. When I get frustrated it wind me up and I find it hard to express my frustration at the best of times, but when lacking a voice its even harder. I feel like I am looking at people sometimes, praying with my eyes to them, to please understand what I am saying.

For the past 3 days, I had been asking the nurses nicely if they could clean and dress my neck dressing as it was hurting more than it should be at this stage and I was pretty sure it was infected. I had had my painkillers changed from ora morph to oxycontin but by the time i went to bed, even they were not cutting through the pain to allow me to get comfortable enough to sleep. I couldnt do my own neck dressing, as again it was to sore to lift my head high enough.

So at midnight, they came to put my night fed up. I dont need the night fed, I am eating and enough, but the rules are that it has to stay in use until a dietician says it can come out. So when they came to set it up, 3 hours after they were meant to, I told them were to stick it. I was kinda already tucked up in bed trying to get comfy, failing and instead crying. I said, I would rather the 10 mins setting up an 10 mins taking down, be used on something more important such as dressings as infection could compromise my surgery and get me sick real quick, where as the fed was just stupid.

She came back at 1:30am and offered to clean my neck.Oh how I could have screamed.But she did do a quick job on it and as a result, I managed to get some sleep.

It was handed over this morning that it NEEDED redoing. Felt like saying ner!
Anyway, docs came in, also said it looked abit 'mucky' but they were not sure of the plan till they spoke to the boss, but promised to have news by dinner time (yay)

Next thing, one of the nurses came in with my file and asked me to go down to clinic as the boss was doing out patients there and would see me.

The walk, although only a few paces, was hard work. I arrived literally gasping. Sat in the waiting room and then had to laugh, when a clinic full of people are sitting there waiting and the boss just comes out and calls me by my first name and strikes up convo with me heading into the clinic room.

He asked about the feed tube, I rolled my eyes and explained as I best i could. He asked if I wanted it out, then handed me a bowl and said, you want it out, take it out. I thought he was joking for a second but he sat there grining, as I removed my own ng. Its an easy task and i knew that, but I guess I just assumed someone would have to do it or have it cleared with them.

the next thing was the tube. He covered the trach and asked if i could breathe. I couldnt. Do he looked a little confussed, then said sod it, lets take it out anyway. There is a T tube underneath that should allow me to breathe. So he got a spare trach ready to shove in just incase, took the sutures out and took the trach out. It was a very nerve-wracking minute or so. He standing over me, with baited breath to see if I can breathe or he needs to act quick. I kinda took two slow breaths testing t at first then smiled at him and said yes, to which he grined back.

Cleaned the tube out and such, then had a look down with the camera.  Theoretically, I should be able to talk and direct breath through my mouth and nose. But, when he looked, there was too much swelling for me to use my upper airway.

The same below the tube, but more so, the arm of the T tube, would not stay outside my neck as it had gone to short. That was the next problem. He stood talking to me, with a clamp and other fun tools in my neck, holding on to this tube so it didnt vanish and get stuck or cut off my airway, whilst he issued out instructions everywhere of things he needed. He then got another surgeon to keep an eye on me as he wanted to find something. The other surgeon look petrified and warned me to behave and not go down haha.

Anyway, in the end, he put a ET tube (the more flexiable tubes used for intubating by mouth)inside the T tube and stitched  one to the other, bear in mind, this was all being done in my neck whilst I sat as still as I could. So yeah, a system was put into place to hold things together and he will review in a couple of days.

Do I think it will work? No. Well I guess it will, but it needs a little more tweaking and playing with.

I awoke from my nap, to find the end of the tube in my bed eek. So, with a little DIY work, I have used a set of trach ties and madea kinda holder for the tube, so I am hoping that it will hold it a little better. And the surgeons can review in the morning and decide if its safe enough.

But, coming out of the room with just the T tube in, was truly wonderful.
I was able to take a slow deep breath right down to the depths of my lungs, without gasping to get the breathe out quicker as I need my next breathe. It was wonderful and I found that I felt very dizzy for the first short while, due to my oxygen levels suddenly jumping. Wonderful wonderful feeling. I realize now, why things felt so wonderful last time I had this big op, as I would have had the same feeling when I got my trach out last time. And why it was so scary when it suddenly began to get bad again. But fingers crossed that this time it will work.


In other news, I have had some sad sad news about Bree. I dont know if anyone knows bree on this blog, but if you do, my thoughts are with you all. I will write more tomorrow.