Update Email - 8th May 2012

Wotcha Folks,

Today, Tuesday 8th May 2012 started quietly. 

The weather is a bit 'off', one minute it's very warm and sunny and the next there are grey skies and it's quite cool (although nothing compared to the UK I am reliably informed!). Over a simple breakfast I reminded myself that, as I was to be alone all day, it would be an easy day with visiting the Hubby and walking the local area taking pictures.

John was very quiet this morning, he didn't really do very much apart from drift in and out of sleep - minimal entertainment value it has to be said. During his morning wash and brush up he was sat up in bed, taken off the ventilator and breathed on his own for 10 minutes. After a very one sided conversation between us I trundled off for a couple of hours to see what I could see.

I returned a couple of hours later to a very sweaty Husband. His temperature is fine however they have put him on steroids due to the 'brain pain' I mentioned last night that is manifesting in his leg/arm. Another 'issue' is his pulse. It is fast and erratic and his rhythm is completely off kilter. They have administered more drugs to try and correct this.....as if he hasn't had enough drugs already!!!!!! When I visited him this evening his pulse was still not right and he is still sweating however he was communicative during his afternoon wash and brush up, sitting on the edge of the bed again and as I have said before, they are not all running around panicking so I am not hugely worried. Yes, I am of course worried (I worry about EVERYTHING!!) but I'm not seriously worried! I'm also not entirely convinced that he's not having an attack but the experts assure me that there are no indicators to give any positive diagnosis to him actually having an attack. They are the experts and I must respect them but it niggles.....

This afternoon, in between visits to Hubby, I received a call from Thunderbirds. Apparently my first choice of hospital is not in John's post code 'catchment area'. John will be going to Lewisham Intensive Care Unit until he becomes an inpatient for his Neuro Rehabilitation which is also within the same hospital so he wont have to move! When will he be going home?!?!?!?! Probably by the END OF THE WEEK!!!!!!!! They informed me that Lewisham is hopeful that they will have a bed tomorrow or Thursday. If this is the case he will be mobilised and taken by Air Ambulance to London within 48 hours of notification of the available bed. Lewisham Hospital is a 20 minute brisk dog walk from our flat, it's location is perfect and I am very happy.

I am riding the crest of a very happy positive wave at the moment. I have waited for today's phone call for what feels like an eternity and I am beyond relieved that there is now a bright light at the end of this dark, horrible tunnel that we have been stuck in. Finally, the man I love can come home and begin his recovery and therapy properly with all of us around him, willing him on.....today is a good day.

You should also know that Mr Ellis was again off his ventilator this evening at around 6pm and managed 30 minutes of breathing by himself, unaided. It did knacker him out and he fell asleep pretty much instantly but it shows just how eager he is for full on therapy to begin, he just wants to get on with it.....and in a couple of days he will be able to!!!!!!

In other news, the hens eggs at home have started hatching today! 

Oh, and in case you are wondering, the pictures I took were crap.....'must try harder'.

Night night from a very proud and happy Husband.

Johnnie & John

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Update Email - 7th May 2012

Greetings,

It is a very pleasant evening here in Bremen. 

The birds are singing, swifts are wheeling and diving overhead, the sun is setting and earlier this evening I said Goodbye to the wonderful, gorgeous Heather. As with the family and Zoo Boys before her I am going to miss having someone here, a shoulder, an ear, a hug. Heather and I shared some really special moments in the past 5 days and I am hugely thankful to her hubby Lawrence and our fabulous God Kidlings, Jemima and Ferdi for loaning me their Wife/Mummy......thank you from the bottom of my heart.

Tomorrow I spend the day alone. Not something I am especially looking forward to I must admit. But spend it alone I must. I have already decided that when I am not spending time with John I am going to grab the Nikon and go and 'shoot' the local wildlife, of which there is much, especially ducklings and moorhen chicks....they are everywhere here, it's like a little nature reserve. If I don't do something I will just sit and mope around and go stir crazy(er)!!!!!

What of Mr Ellis I hear you ask?!?! 

Well, after last night's marathon session he has had a very quiet day, a very quiet day I am thankful for. Yesterday, both the positive and the negative has knackered him and he is pooped. He appears to be experiencing pain in his right elbow and knee. My immediate worry was that he was having an arthritic attack, as he does now and again, and because he hasn't been taking his medication he was going to be in great pain, something that really did concern me. Today they took blood and tested for 'arthritic markers' and the tests returned negative....we can safely assume he's not having an attack *phew*. However, he is definitely experiencing pain and they *think* it might be neurological pain in his brain due to the infarctions that is manifesting itself in his elbow and knee. He obviously requires pain management and he is on a drug that, according to the google search I did is 100 times more powerful than morphine!!!!!!!!! He will most definitely sleep tonight methinks......

I called Thunderbirds this afternoon to get an update on the bed situation in the UK. There isn't an update because, due to the Bank Holiday they haven't been able to speak to anyone. I am and remain hopeful that we will hear something tomorrow and we can really start the ball rolling with his repatriation to the UK. As well as getting Hubby home, I am gagging to be in our home with our dogs, I crave familiarity and the English language and I need to see friends and family....I feel the need for a huge sob, cry, scream, shout, tantrum, major eppy which is not something I am prepared to do here so prepare yourselves London!

While we are on the subject of sobbing, the lovely, lovely staff in the Critical Care Unit presented me with a couple of pictures this evening as I entered the Unit to give my man a goodnight kiss. Earlier today, after they had washed John, they sat him on the edge of the bed and they took a couple of pictures. Tonight they printed them off for me as a surprise. I cannot look at them without crying but I cannot stop looking at them. There have been lots and lots and lots of tears and there will continue to be I am sure (you may have guessed that I am a tad emotional). I have shed buckets and buckets of tears of sadness, frustration, anger and of course joy for the positive steps he has made recently. Yes, there have been some shuffles forward and some steps back, this is to be expected and is completely normal (so I am told....I no longer know what the hell is normal anymore!).

Johnnie Ellis has been and will continue to be astonishing, of this I am sure......he just needs to learn a little bit of patience!!!!!!

Sweet dreams all.

Him & Me 

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Update Email - 6th May 2012

Good Evening my Lovelies,

Well, tonight's update picks up where last night's ended really....with Mr John Arthur Ellis being pretty flipping amazing actually......we are enjoying many, many kisses now that we can and it is wonderful.

Imagine mine and Heather's surprise when we entered the Critical Care Unit this morning to find Hubby lying there in his bed without his ventilator. Yes, you read that right, he was breathing on his OWN, unassisted, BY HIMSELF! On the first attempt, they normally let patients breathe on their own for 2 or 3 minutes to see how they cope. John did it for 10 minutes!!!!!!!!!!!!!!!!!!!!!!!! It did visibly tire him but it's just so encouraging to see him doing these things.

John's lungs are still in pretty bad shape due to the trauma that he experienced in the second operation because of the many transfusions he had to have, however to be breathing alone for 10 minutes so soon after he has woken from the coma is incredible.

We were also informed that during John's morning wash and brush up he was manoeuvred to the edge of the bed and sat up. He cannot do this unassisted but at least he is not just lying there anymore which he has been doing for over 2 weeks. While he was sat up he tried to speak (he can't because of his tracheotomy) and his nurse is convinced that he tried to say Yes when asked if he was ok!?!?!?!?!?!?!?!? I was almost envious and jealous that the nurse got to hear this and not me but his nurses are so lovely and they are all very fond of John, each and every day they smile and let us know of any milestones that he has achieved that we may have missed. I would have liked to have missed the enormous fart he did today - however this is another indicator that Mr Ellis is well on his way back to us!!!

This afternoon, after a slice of less than perfect cake (the cake culture here is HUGE!!!) we made our way back to the Unit to see him. What should greet us this time.....?! Mr Ellis OFF his ventilator AGAIN! He didn't manage 10 minutes this afternoon, he managed FIFTEEN!!!!!!!!! In one day he has breathed on his own for a grand total of 25 minutes.......it is astonishing, even his doctors and nurses are in awe of him. He is doing sooooooooo well. I am one very proud Hubby.

To bring us back down to earth for a moment, his blood pressure is high, his pulse races much faster than it should and his eyesight is still a worry - he doesn't focus yet although you can see that he is most definitely trying. I wasn't sure that yesterday's kisses were more when he felt me as opposed to seeing me, so we tried speaking to him, warning him I was closing in as it were and he did pucker up before I got to touch his face, so we are 'pretty sure' that his eyesight is there, it's just a struggle for him to focus at the moment......time will tell.

And that's another thing, time. He's only been in this position for just over two weeks. He has a long road ahead of him in terms of rehabilitation, therapy and recovery......but look how far he has come in just over two days......I don't think Hubby is going to let a minor thing like an aortic dissection, two heart and lung bypasses and damage to his brain stop him from getting on with his life....do you?!?!?!?!?!?!?! (He is an Ellis after all!)...

Today I started investigating a couple of things for me in terms of therapy (say nothing!) and support groups. Johnnie will be very well looked after, he will receive his relevant therapies in abundance and will continue to recover. Due to the life change that we are both going to experience, I think it's a good idea to try and get some 'help' for me. I am scared and dreading many things, most of them silly, but dreading them I am and will, I doubt I would be human if I didn't. I won't bore you with them here but suffice to say I would rather get help from the get go than have a dramatic meltdown and be sectioned!!! I don't think there has been a day I haven't sat and sobbed into my cup of coffee or worried sick about something as trivial as getting the dogs booster jabs booked (THANK YOU KAY AND JIM for sorting little Maximillian out on that one!!!!). I also cancelled our summer holiday in June......we'll just have to have it when he is fighting fit and healthy next year.....as long as I have him, I can wait.

So, I think that's more than enough excitement for one day, don't you?!?! Well, I think it's more than enough but Mr Ellis evidently does not. We returned after dinner this evening to check on him and he has had what I will refer to as a little shuffle backwards. He has done so many amazing and positive things that he is bound to have one or two set backs (and it wouldn't be normal recovery if all he did was positive stuff!). Tonight he had a high temperature, a fever in fact and they had to put ice under his legs to assist in cooling him down. His pulse was very high and his blood pressure (the one thing I am really obsessive over) was the highest I have ever seen it.......perhaps today was a little 'too much too soon'. 

The one thing that gives me solace and doesn't make me hysterical is that the nurses, who are all brilliant, did not go running around like loonies, they didn't panic over his condition and they didn't ask us to leave, etc, etc, they were cool, calm and collected as always. Had they done any of those things I would currently be pacing the corridors of the hospital, hoping, praying and waiting. 

Instead, I am here in my hotel room, updating you all whilst hoping and praying and waiting!

Johnnie & John 

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5th May 2012 - No email update

There was no email update one year ago today.

Why?

Because I sent a video link to family and selected close friends.

A video of John, sat up in bed, his beautiful blue eyes open.

We kissed.

A very special friend caught it on camera.

I will not post it online for anyone to see.

It's not appropriate.

It's so extremely precious to me.

I wouldn't denegrate John's memory by 'putting it out there for the masses'.

Instead, I will tell you about the tattoo I got on Friday.

A tattoo about Love and Hope and very happy memories.

Love isn't easy.

Sometimes it can (and does) really fuck you up!

The minute you start to love someone you accept the risk that one day they're not going to be there anymore.

But, with the heart breaking sadness of loss, it is incredibly important to treasure all the wonderful memories shared together, as a couple, as Lovers, as Soul Mates.

John Ellis, the man I married on 15th August 2009, taught me many wonderful things, most of all about Love and Life (and maybe a little smidging about birds too!) - about how exciting they could be and, ultimately, how heart breaking they are.

This tattoo, designed using the bird from our Civil Partnership stationery and with words that will always, for me, ring true, symbolises the fact that John and I will always be together. Yes, he will always be with me, but now he will always be a part of me. I will look at it and only ever think of one thing, the happiest day of my life - the day we married......I will see Life and Love not Death and Despair....always and forever.

It also represents a part of my broken heart - the first piece that has been taped up, sewn back together and glued back on.

Update Email - 4th May 2012

Greetings Campers,

Johnnie 'Michael Flatley' Ellis's manager here.

Yes, today has been another one of those "I'm wearing my trainers in bed so lets do a jig" days! This morning was quiet, peaceful and relaxed with hardly a twitch. However, it would appear that afternoons are becoming his time to 'kick off' and he does so in quite spectacular fashion. Today we had his pulse go over 120 along with a new temperature high of 39.2 - a small amount of sedation saw to his 'excitement' and he soon calmed down. And let's not forget that his blood pressure, which they'd like to try and maintain at a relatively low level, was up again....it happens everytime he starts revving up! I like to think it happens everytime I kiss him on the lips, but I can't take all the credit.

What news on the coming home front I hear you ask......?! Well, they're pretty much done with him here. They have brought him as far as they can and he now needs to begin the next phase of neuro rehab, which he can only do in a dedicated place.....which is not here.

The best option, and for me the ONLY option, is to get him home to London, into a neuro rehab ITU followed by inpatient neuro rehab care. I have spoken to Thunderbirds (International SOS) today and given my recommendations for suitable hospitals in London that they can approach to see if:

1. They have a consultant that will take him as their patient (although I have already given a consultant name that has been recommended to me by our fantastic neighbour).

2. There is a bed available.

We are currently waiting to see if there is a bed available and won't probably know until early next week.....as soon as there is a bed the rescue mission will kick in and Thunderbirds will arrange an air ambulance to airlift him to London. Once I know the date I will then try to get home before him and be in the new hospital to greet him and introduce myself to the new team that will be taking care of the man I love....they're going to be seeing A LOT of me over the coming months so they had better get used to my mug!!! That is pretty much it on the coming home front, there's really not much to tell right now, we are in yet another limbo....oh deep joy! Oh, by the way, if the bed takes a while then they have mentioned the possibility of starting his rehab in another hospital HERE in Germany. For me, this is NOT an option, I can assure you of that!!!!

Heather has been and continues to be absolutely wonderful to have around. I am incredibly grateful to her Husband and my wonderful little God Kids for loaning me their wife/Mummy.......THANK YOU CORNWALL!!!!!! 

She has put up with my jibberings (making note of many which is a worry!) and has encouraged my eating of cake - not that I ever needed much encouragement on that particular subject but one has to show willing, non? Heather has, as with all previous visitors to Johnnie's bedside, been subjected to my 'emotional state' on a daily basis, one minute laughing, the next sobbing. Tonight was no exception, I have felt it bubbling under the surface all day and I very nearly let the flood gates open, however I held it together as best I could and plodded on....you have to really.

I have such worries, concerns, thoughts, fears. They are many and they are all in my head. They may not be real, they may not happen, they may be completely unrealistic and extremely silly, but that doesn't stop them being there. Do not fear dear reader, I am not 'losing it', I am merely writing it down and trying as hard as I might to gain some sort of cathartic therapy from all this mess. I know that being in England will mean familiarity and home, but it is a familiarity and home that I will be doing on my own for quite some months. 

Johnnie will not be there when I get home from work in the evenings.

He won't wake up on Saturday morning and make a cuppa for us both and come back to bed with the dogs.

We won't be planning any holidays any time soon.

I won't be topping up his wine glass in the evening while we catch up on True Blood.

He might not like the window boxes I am going to prepare.

Who's going to remind him to take his pills?

Going out to friends for dinner will not be as joyous or raucous as it once was with just me - he is the effervescent one!

Cuddles.....I will miss cuddles.....and the obvious intimacy of a married couple who are very much in love.

.

.

.

These are just some of the hundreds of thoughts in my head right now.

Yes, I know that I can 'look forward' to all these things in the future when he recovers, but I don't want to. 

I don't want this new life. 

I don't want to say goodbye to our old life. 

I know I have to but I DON'T WANT TO! 

We had the best life, a wonderful life, a f*cking FANTASTIC life and I really do not know why we should have to start all over again because that is exactly what we are going to have to do. 

It's never going to be the same again. 

It can't be the same again. 

I am well aware that the majority of the contents in my head are speculation, what's, ifs, buts, maybes, I know that but at the same time I must maintain a healthy respect to the fact that some things are inevitable and cannot change or be changed.

Throughout all that has happened and all that is to come, the one unchangeable thing I know is that I am very, VERY much in love with Mr John Arthur Ellis. I just hope and hope that the new Johnnie that emerges from this nightmare loves me in just the same way as the old one. I could not want for anything more.

Guten Nacht One and All.

The Johns 

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Update Email - 3rd May 2012

Hello You Lot,

One of these evenings I am going to keep you all waiting and not do an evening update......but not tonight.

The day started quietly and leisurely enough.

Get there at 10am they said. 

You can see your Hubby they said.

We got there at 10am. 

We could not see my Hubby.

He was booked to have a CT scan on his brain today and they managed to get him in earlier than they thought so we literally saw him being wheeled past us and off into the distance to Radiology for his scan.

The scan results have brought no further issues for John, he is still doing ok on that front. Yes, I absolutely wanted them to tell me that the damage to his brain had miraculously been cured and had disappeared or that they were wrong and there was no damage, but alas that particular dream was dashed almost instantly. 

However, he has not declined and there are no further issues to challenge him......good times.

Previous updates have indicated that his movement, although it was there in some areas, was limited. We were also unsure of the extent of his movement. Could he move all his limbs, could he do this, do that, etc, etc.

Today we got confirmation from the Big Man himself that he CAN move ALL his limbs!!!!!!!!! 

After today's antics Heather and I have decided to call him John 'Michael Flatley' McEllis.....he was almost wriggling like a fish on a line, there was movement in every limb. In fact, when he was wriggling I asked him to move his left leg and he did, almost on cue.....it was just too coincidental to be coincidence so we don't think it was coincidence - did I mention coincidence?????

On a lesser note, but in the grand scheme of things it's nothing to worry about (considering everything else!!!!!!!!!), he has a temperature and his 'gammy eye' has a patch. The patch has been applied due to some water in his eye not draining and there is danger of infection so they've tried to sort it today. Hopefully in a couple of days it will be gone. 

At the moment he looks like a cross between Cap'n Jack Sparrow and Bonzo the Clown (with his big trainers on in bed) but I still think he's the best thing since sliced bread. I can assure you I don't have a pirate/clown fetish.....I think!

My focus today has been the sourcing of a suitable hospital for him in London.....I am soooooooo excited that we are bringing him home some time soon, I really cannot wait for this living hell to be over and be back in the UK. The people here have been amazing and lovely to us, I cannot fault them one bit. It's the language barrier that I have had enough of, I really need the English language, the familiarity of our home, our friends and family......and I cannot tell you how much I need our two little dogs, for restorative hugs and cuddles and unconditional love.

Well I think that will do you all for today, I must depart to bed before it all starts again tomorrow. After today I am expecting him to dance his way out of the Critical Care Unit.....I will report back.

Ich liebe meinen Mann so sehr!!!

Ellis & McKenna

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Update Email - 2nd May 2012

Good evening everyone,

It's a late one tonight.....I am tired and nearly didn't do it but I've got myself into this routine and didn't feel comfortable going to sleep without giving you some more good news........yes, there's more!

First of all, the gorgeously lovely Heather arrived today and was greeted by me turning into a blubbering wreck! The poor woman flew home from a couple of weeks in the Philippines only a few days ago and then came here today for the rest of the week....our wonderful little God Children will be missing their Mum, however even they have got into the spirit of things and send their Fairy God Father love and hugs and get well soon rockets!!!!! (That'll be our 3 year old god son, Ferdi who is also mightily impressed that John has his own helicopter).........John was flown here from the original hospital if you remember.

This morning John was awake when we went to see him and his eyes were open. He didn't do too much in the way of moving apart from the now usual hand gripping however when I was kissing him on the lips (something I am LOVING!!!!!) Heather said there was definite attempts at 'puckering up' or getting ready to receive a kiss which I have to say fills my heart with joy. His eyes are not yet focusing and are quite milky but this will improve as the days go on.

While we were there this morning the lovely Dr Loeschke (spelling!) asked if I had yet considered a hospital in the UK for him. Obviously I hadn't given it too much thought as we had been told it may be some time before he will be able to fly. So imagine my surprise when I was informed that he might.....MIGHT be able to return to the UK in a week or so!!!!!!!!!!!!!!!!!!!!!!!! He will need to go to a suitable acute neuro rehab unit and I have been on the case all afternoon with work and insurance, making calls, emails, you name it I have been doing it. Remember, it's not an absolute definite but we are now looking at coming home in the near future which will be brilliant, it really will!!!

John is having another CT scan tomorrow on his brain to check progress and make sure there is no further change. His Doctors will then meet with the Neuro consultant and they will hatch a plan for his ultimate return to the UK, so I should have some news on Friday, I hope.....

Johnnie also had a PEG tube today.....basically it's moving his feeding tube from his nasal passage to his tummy so he now has absolutely no pipes or tubes in his face and he looks just fine, handsome in fact......he looks like my Husband again and this too makes me happy.

Another good day in the world of Mr John Ellis......I can get used to these days......

I'm off to bed to dream about being at home with my dogs, my hens and ultimately my Man.

Lots and lots and lots of love

John & Johnnie

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