He is at this moment undergoing rehabilitation which should continue until the end of August beginning of September. I have been keeping a blog on www.lefkaslife.blogspot.com and that's why there have been no entries for some time on our personal blog. However from now on I will be posting Marks progress on both blogs from now on. This entry is the story so far .....
2245 Wednesday 8th June
From Maureen, late Tuesday
What is 'TWOC'? Don't read this while you're eating. TWOC is Try WithOut Catheter. It's the second stage in training the bladder to behave as normally as possible. The first stage was a tap on the existing catheter which was turned off for set periods to train the bladder to retain urine, then emptied regularly. The second stage is to remove the catheter and experiment with a sheath dranage system. The sheath is attached to the penis with a special adhesive and the end has a hole in it which can be connected to a drainage bag.
During this training period they are trying to find out if his bladder well retain a reasonable amount, then empty itself fully. Morning, evening and probably during the night to begin with, he will still have a catheter inserted to empty the bladder. Eventually Mark will learn when the bladder is full and will trigger it to empty itself normally.
This is Mark's chosen route because he feels it will give him the most normal bladder funtion and enable him to live as flexibly as possible. It also reduces risks of bladder infections and kidney damage. People with spinal injuries above T6 (Thoracic 6) can have a condition called Autonomic Disreflexia which happens with the bladder pressure becoming too high. It can be life threatening and even a mild onset can seriously impair the quality of life. It can manifest itself in different ways with different people. We think Mark's shivering is his body's way of telling him something is wrong.
This is quite a big step in getting back to as normal a life as possible so we're hoping it will be successful. As I mentioned in an earlier blog, getting into a chair is only the tip of the iceberg to returning to a life but in the meantime the indignities the poor guy has to put up with, you can't imagine.
On to something much nicer to think about... Mark is 90% along the way to transferring from bed to wheelchair which is the first of his transferring goals and he had his hands dyno tested again today. He has 2 to 3 times more strength more strength than he had 3 weeks ago. Don't get carried away and think he's nearly ack to normal, he still couldn't tear the top off a yoghurt pot but he can write again, use his phone, wash and shave himself, use the computer and use the telly remote. - what more does any man need to be able to do!!
He's also working with more weights in the gym and his arms are gaining strenth every day. We have a goal setting meeting tomorrow so maybe some of you can suggest something for the list - we look forward to your suggestions.
1130 Tuesday 7th June
From Maureen, Sunday 5th June
Bread and Jam?....Pinderfields is an unusual hospital in that it doesn't own the building. It was built by Balfour Beaty and it's maintained, cleaned and victualed by Balfour Beaty and weirdly many of the aspects of the day to day running are managed by Balfour Beaty. I'll give you two examples....they designed storage space into the building which nurses and doctors have to use for specific things, like sheets, blankets and everything other than medicines. Most of the storage isn't big enough and situated ridiculous distances from where it's needed. They're not supposed to store any patients specific requirements..eg night urine bags... at the point of the patient so the staff are walking miles everyday un-necessarily. If they break the rules the ward is fined!
The second example.....Mark has toast and jam for breakfast. One day he got bread and jam and was told by the nurse that the toaster was broken. After a week of this one of the nurses offered to go to Currys herself and get a new toaster. Oh no, that can't be done. It has to be a specific toaster supplied by Balfour Beaty and PAT tested before it can be used. That was two weeks ago and he's still on bread and jam!
Communication is probably Mark's biggest frustration. The consultant doen't pass down his thoughts or instructions to the doctor or nurses....the doctor doesn't always pass on thoughts or instructions to the nurses and it's not until Mark speaks to a nurse about something particular that his consultant or doctor has said that they then need to check back up the chain to get the right instruction. An example....Mark is going to begin the next stage in bladder management. When they start that he has antibiotics because infection is common when catheters are removed and inserted. His consultant started him on antibiotics on Thursday to begin the process over the weekend. Friday, his doctor came along and when Mark told him what the consultant was doing he countermanded that and said he didn't want it happening over the weekend as it can often make the patient feel ill and he didn't want Mark feeling ill over the weekend when staffing levels were lower. Antibiotics were stopped. So now he'll start them again during next week and begin the process again.
We had a meeting with the woman who is supposed to help us understand the benefits system and finished it with hardly any more understanding than we started with. She was supposed to come back the following week with answers to some questions we had but we've not seen her again. There's been no counselling offered for Mark or indeed us as a family. The only support has come from the Peer Advisor from SIA. and he's lovely.
There are positives as well. The nurses are lovely and work really hard and luckily the Occupational Therapy and Physio is very good and most of the time Mark comes out of his sessions very positive and feeling good. Unfortunately his physio is on holiday for a week and the woman who took his session on Thusday had him trying to do something that was just too far on from his strength and co-ordination that he didn't have a hope of achieving it. He came out of that session very down. It knocked his confidence and for the first time he felt depressed. His physio the next day was someone he has been working with over the past few weeks so got back on track. His improvement each day is very key to his emotional and psychological well being. The emotional tightrope everyone is walking there in terms of their rehabilitation is something no one other than those going through it can possibly understand.
On a day to day basis Mark is improving all the time. That is due mostly to his fierce determination to achieve the personal goals he has set himself. His left hand , which had virtually no movement after his surgery, is now as dextrous as his right. The strength and co-ordination he is building in his upper body you can almost feel on a day to day basis. Purely on an aesthetic basis he has put weight on and is beginning to look like himself again. His hair is growing and has almost covered all the scars on his head. In the next couple of weeks we will begin planning for his first home visit, which should be about 4 weeks away. That sounds like a long time but he's been here 5 weeks already! I'll leave you with a lighter view of our lives...for the first time in our life together I can beat Mark in arm wrestling and I eat more than him...can you believe that!. However, he can give me a cuddle and due to the strength he has in his arms now he can still squeeze me till I have to say stop!!
0900 Thursday 2nd June
From Maureen , late yesterday
Table Tennis again today.....I didn't fall out of the chair again you'll be pleased to know! Mark had improved considerably and managed to have actual rallies this week. He didn't last long though. He had worked so hard in the gym he was worn out. I think the problem with his bladder/kidney infection is also affecting him. They've started a course of antibiotics tonight so hopefully they will have that under control pretty quickly.
He has a phone in hospital now and can use it fairly well. His number is but please don't ring him all at once... he'll kill me for giving it out! Best to text him for now. It's another task off his goal list that he has to do every week for occupational therapy. He also spent time surfing the net the other day. that's something he really misses. Now he wants a laptop to play with. He'll want a Hi-Fi in the ward before long! He is slowly returning to the Mark we all know, wanting all his technology around him. Mike and I left him tonight talking engines and tuning with friends....he was in his element.
0900 Tuesday 31st May
From Maureen, yesterday (Monday)
We were thinking of you all yesterday and hope everyone had a great time last night. We're amazed and very, very grateful for all the effort put in on our behalf.
Mark is doing his part and working very hard in the gym. He's had a battle of wits with his physio (Dean). I think Dean is learning there's not much point arguing with Mark once he's made up his mind!!! Anyway, Mark has set a goal of being able to transfer into a car by the time he leaves. Dean thinks that's a big ask but Mark won't be put off and has bullied Dean into agreeing that's what they should be working towards. Poor Dean, he doesn't stand a chance!
Mark is still battling dizziness, even with the ephedrine to help. We've experimented with having a second dose in the late afternoon but that didn't work... he still has trouble around dinner time. Next option is to go back to bed for an hour after the gym and rest, then spend a few hours in the evening in his chair. We'll see how that goes over the next few days.
We still have the occasional hiccup, the latest, resulting with Mark having to spend Saturday in bed. He has a tap on his catheter which is turned off for periods during the day, stopping the flow of urine into the bag. This is to train his bladder back to a more normal working order. Friday night the nurse who put him to bed turned it off instead of on, stopping the flow. The result was an overflowing bladder causing trauma. By the time anyone realised what had happened Mark and his bed were soaked and when the tap was turned back on what was coming out was lots of blood. Poor Mark felt ill and really p*******d off most of Saturday. He gets very frustrated with these setbacks when he's mostly highly motivated to work. Sunday was much better and he was up to enjoy the Grand Prix and a bacon sandwich.
We had a meeting with his doctor on Friday and Mark was finally saw his xray of the repair to his neck. He's happy now that he has all the technical info and as normal for Mark, he never stops asking questions about his condition and wants to understand every little nuance and how to deal with it. I think the doctors and nurses are amazed at the detail he wants to know about. It seems lots of people don't want to know anything and live in a state of denial.....not Mark!!!
0745 Saturday 28th May
From Maureen, late on Thursday
Yesterday afternoon we arrived at the hospital, walking to Mark's room we passed the head of OT, 'he's playing table tennis' she said. WHAT! Mark and games. He hates games, especially hand/ball games. Anyway we go along to the gym and there he was waiting, ready to play table tennis with us. We also had to sit in a chair and we played for about an hour till Mark could hardly lift his arm any more. We did have a laugh, especially when I fell out of my chair trying to go backwards and forwards too quickly!
Mark's doctor has decided he has enough info about what is causing his dizziness - low blood pressure - to prescribe ephedrine before he gets out of bed into his chair. It has made such a massive difference to the way he feels. He knows now that he's not felt 'normal' for any of the time he has spent in his chair...he's always slightly dizzy and his eyesight is slightly blurred. Now, having had the ephedrine , he knows what it's like to feel normal again. Consequently, when he feels dizzy later in the day it seems even worse and it always comes on again around dinner time so he gets fed up and doesn't want to eat. He was told by his doctor that he can have more ephedrine later afternoon but when he asked for it today the nurses wouldn't let him have it because that's not normally done. They hadn't had the message from the doctors that it was ok in his case. Lack of communication AGAIN from doctors to nurses....it's really frustrating.
Anyway, we have a meeting with his doctor tomorrow and I think he's going to get his ear chewed by Mark about this lack of communication. It's great that Mark can fight his own corner now.. it makes him feel more in control and causes me less stress.
He's also got a mild e-coli bug which was causing the severe shivering a few days ago. He's had his catheter changed and been drinking masses of liquid to flush it out and seems to have suffered no lasting effect from that.
His hair is growing out now and with the weight he's put on he's almost looking his old self again, which is lovely to see.
0815 Thursday 26th May
From Maureen, yesterday:-
Mark is continuing to work hard in the gym and at occupational therapy. However, the last couple of days have seen him struggling with, sometimes, severe dizziness. It's obvious to see when it begins, all the blood drains out of his face and if someone doesn't tip him back in his chair or lift his legs quickly, he'll pass out. His description of it is 'the curtains are coming down'. It was severe enough yesterday to send him back to bed for a while. They've been measuring his blood pressure before he gets up, when he goes dizzy (yesterday it was 73/55 which is not good) then again when he's lying down, which is nearer normal. He's always suffered slightly low blood pressure. Hopefully, they have enough data now to decide to give him some medication to help stabilise it. They're careful about using blood pressure meds until they're sure it's always low as the meds raise it which could be dangerous if it was already high.
On a positive note his arms are gaining strength every day. He has attempted his first bed to chair transfer - didn't go too well but it was a first attempt. His hands are still continuing to gain dexterity and even we can see on a day to day basis small improvements. He can use the telly remote now - aah in charge of something again...it's a morale booster.
To our great friends in Greece, Mark read about the fund raiser you are putting on this weekend and as we enter the 'benefits nightmare' we both want to say how grateful we are to have such fantastic friends. It's difficult to find the words to really say how much that means to us - not just the raising of money but that everyone is willing to go to so much effort on our behalf. We love you all.
1000 Monday 23rd May
From Maureen :-
We've finally had a day with no mishaps. No dizzy spells, no shivering when he wen back to bed and hardly any spillage when he ate dinner tonight. He ate bacon sandwiches for lunch and watched F1 with friends (which went well apparently....I wasn't there).
He was back in bed just after 7pm, teeth cleaned, setting up for an evening in front of the telly before beginning work in the gym again tomorrow (Monday). It was a pleasure for him to have a calm, event free day.
We expect to get the lab results of the urine test back tomorrow to find out if he really has a bug or not. If he has, hopefully it will have been flushed out by the gallons of liquid I'm constantly pouring down his throat!
We received an NHS Continuing Healthcare Assessment pack. It's supposed to help you prepare for their assessment prior to discharge. It's 107 pages thick!!! No wonder they send it so early....you need a degree to work your way through it. Plenty of bed time reading for me then!
2345 Friday 20th May
From Maureen :-
Two steps forward and one back. Although Mark is making brilliant progress on a day to day basis we still get little hiccups that are disconcerting. Last night, soon after Mark went to bed he started to shiver as though he was cold.... and it became quite violent shivering to the point it was giving him serious pain in his neck which required pain meds. He's had mild shivers before but they soon go...but after an hour of this it was obvious something wasn't right. When they inspected his catheter they found it was partially blocked and required flushing. They also tested his urine and it had everthing in it that shouldn't be,,,, indicating he may have some kind of bug. It's been sent off for further testing in the lab.
Because Mark has no feeling in the majority of his body, his body has found a new way to let him know when something is not right. Unfortunately it's not alsways easy for the nurses to tell what that might be. It will always be a matter of trial and error. Like I mentioned in a previous blog, getting out of bed into a chair is only the tip of the iceberg for what Mark has to contend with from now on.
On a brighter note he is getting more movement and strength in his hands and arms. He had his hands 'dyno' tested yesterday and he measured higher on both hands than the occupational therapist thought he would. He's doing so well in the gym that from now on he's allowed to go in and work out on his own. He has explained to his physio that the closest he's been to a gym in the past is to pay MY gym fees!!!!!
0230 Wednesday 18th May
From Maureen :-
Mark got his new chair yesterday but it wasn't tuned enough for him so it had to have some modifications. Today (Tuesday) it was a bit better but is still not quite right so more adjustments to be made tomorrow. He is beginning to get around by himself a little now.....there'll be no stopping him soon.
He's having problems with low blood pressure and when he's in his chair he has spells of feeling faint. That's slowing his progress down a bit and causing him great frustration.
His hands continue to improve and we can see differences every day. His arms and shoulders continue to get stronger and they're working towards getting his collar off permanently, which will be another big step forward.
His appetite is slowly returning and he's asking for bacon sandwiches, pork pies, more curry and fish and chips. Tomorrow we're taking him a good hot chilli for dinner. Something to make you chuckle....Mark is learning how to use cutlery all over again. The other night we were eating chicken curry and he couldn't get a piece of chicken on his fork, so he had to use two hands to stab it. He put it in his mouth and when he tried to remove the fork his hand just slid down the handle....leaving the fork hanging out of his mouth. Assistance had to be rendered. We managed to laugh our way through all these trials and tribulations.
1915 Sunday 15th May
From Maureen :-
We've had a few really good days with lots more 'firsts'. Mark has had two sessions in the gym so he's had aching shoulders and arms from that...and believe me, aches from being in a gym is an amazing FIRST for Mark!
He's eating his toast himself. Mark, Mike and I had our first meal around a table as a family, with Mark eating himself.
Last night he had his sleep meds cut down. Unfortunately that coincided with a new person in his room (only 4 beds in the room) who suffers from Asbergers. He rang for a nurse every 15-20mins ALL night. So he was the first person Mark has wanted to punch!
Today he had his first shower, which he really enjoyed. This afternoon he had his first jaunt around the hospital in his chair with me driving - scary! This evening he had his first curry (he had a bit of a panic that he might not enjoy a curry because some of his tastes had changed - I thought that highly unlikely),, again sitting at the table with friends. Sitting around a table having a meal and chatting is such a normal thing to do but it seems like a lifetime since we last did it. Tonight he cleaned his own teeth. That was brilliant because it showed just how much more dexterity he now has in his hands. He has been working his hands really hard over the last 5 days and it shows in the day to day new things he can do.
Every new 'first' is a discovery and a great boost to his spirits....and his spirits are really good at the moment. His determination to work for himself is a real inspiration and a credit to his strength of character. I am immensely proud of him.
2345 Friday 13th May
Firstly an apology regarding the tardiness of this update...... blogger was having problems so I was unable to post...... now, apparently, back to normal.
From Maureen yesterday, late morning :-
Mark has spent two consecutive afternoon sessions in the gym and has been knackered after each session but can see improvements in balance and upper body strength from both sessions. It's really hard work for him but he's putting everything into it. Mike is getting him protein shakes to drink after he's been in the gym. We're still not convinced he's able to eat enough calories for the amount of work he's doing.
The dexterity in his hands is improving almost daily now...he's able to eat his toast, bananas, liquorice allsorts and a sandwich unaided. He still has a long way to go in terms of building strength in his hands but the physio seems pretty positive he will easily manage his chair and sees no reason why he won't drive eventually.
Along with all the positives we're also learning about the things no one talks about...like bowel and bladder management, pressure sores, skin management and general dangers to areas of the body that have no feeling. Getting up out of bed and into a chair is just the tip of the ice-berg to getting back to life.
We have a steady stream of visitors, which is brilliant for Mark and now he's building up time in his chair (an hour or more each day) we can move to areas of the hospital where he can take telephone calls as well. Keeping contact with the outside makes it easier for when we start planning weekend leaves from the hospital.
0845 Wednesday 11th May
From Maureen :-
Yesterday (Monday) was both momentous and poignant. Momentous because it was Mark's first time in a wheelchair. Poignant because although we had come to terms with the fact that he would be in a wheelchair, making it real like that really brought it home for both of us.
It was exciting and heartbreaking. Exciting because he is really moving on now and from today (Tuesday) he will have fixed times in the gym and with OT (occupational therapy). Heartbreaking because this should not be his life.
The contradictory feelings keep us in a constant roller-coaster of emotions....but all in all, yesterday was a massive step forward and that's the only way to go.
0800 Monday 9th May
From Maureen :-
Some lighter moments from Pindersfield.....
- the look of terror on Mark's face the first time I shaved him. I did say I had the little bits of toilet paper ready to put on all the nicks but that didn't amuse him - he survived and looked pretty good!
- we were chatting yesterday and Mark said his forehead felt tight. I said I bet they've given you a face lift when they sewed up the wound on his head....people pay thousands for the same effect!
- he was telling Mike a joke yesterday and was laughing so hard about the punch line to come he couldn't actually get it out. Mike was laughing just as hard at Mark shaking all over with laughter - I love my two men.
- Mark could pick up his own liquorice allsorts today and feed himself a banana without squashing it or stuffing it up his nose.
- The surgeon told us he could probably go home for a weekend visit in about six weeks. We reminded him that we were living on a boat so we had better sort out a home quickly!
On a more serious note... his hands are gaining a little more dexterity and strength every day. The slight pressure sore on his back is improving so he should be up the week and the first job is to get him feeding and washing himself.
Mark's spirits are good and he's looking forward to moving on this week. They think his stay there will be around 5 months. A lot shorter than we originally thought.
1120 Sunday 8th May
From Maureen :-
Days three and four. Had an appointment booked to see Mark's consultant on Friday afternoon. Phone call 8.30am to tell me consultant's secretary had booked the appointment without knowing he was somewhere else.....hellooooo, communication!!! At least I know before I actually leave for the hospital.
Mark still confined to bed with the slight pressure sore on his back. It's improving slowly. He's still being patient and felt better after a visit from a friend.
On Saturday we finally get to meet the consultant and have to say he is a really nice man. He spent the best part of an hour with Mike and I and went over everything we wanted to know....including the cock-up with Mark's meds. It seems a junior doctor who did the admission just decided to change his dosage of the nerve inhibitor without bothering to discuss it with anyone. The consultant couldn't even say why he would have done it!
He complimented the surgery and said it looked good on the x-ray and he had no concerns about it. He still thinks Mark will be up in a chair Monday or Tuesday and then the real work begins. Learning to feed and wash himself and beginning work in the gym. He's eating better but we're still not sure he's getting enough calories yet but they're keeping an eye on it. Never thought I would be saying Mark is not getting enough calories!!!. He had some liquorice allsorts yesterday so that shows his appetite is slowly returning.
So, we're beginning to feel a bit happier with the place.... we'll see what the next few days bring.
0115 Friday 6th May
From Maureen :-
A positive view of Pinderfields is still on hold...
Day two at Pinderfields. Mark did have his x-ray today (Thursday) but no feedback yet. They've found he has developed the beginnings of a pressure sore so he's confined to bed for another few days, being turned regularly but not lying on his back. He got to speak to his consultant this morning and they discussed the mess up with his drugs the day before and it was decided to take Mark off it. That's definitely preferable to any further mess ups. He shouldn't have any adverse reaction to stopping it, according to the consultant. Mark's spirits are pretty low with these setbacks but is trying to take it patiently.
So far no one has spoken to us to discuss anything about Mark, his programme, what's expected of us, what we need to provide him with, how long he's likely to be there, or anything else. I have had to chase up an appointment with the consultant (Friday) and the Liason Team (next Monday) to find out what we can expect to happen over the next month or so. It seems communication is NOT a strong point here. The only positive is that the physio is happy for me to continue working with Mark and is going to give me more exercises to do with him.
If I sound a bit miffed about our experience so far, you would be right....and I'm probably not going to take it so patiently! Please, please let our experience improve over the next few days.
2330 Thursday 5th May
From Maureen :-
Pindersfields, Mark's first day. He was seen by his consultant early in the morning and told he would have an x-ray and a touch and scratch test during the day....and from there they would start his programme. He also said Mark could sit up and he would inform the nursing staff of this.
Next, he met his physio, who he really liked and it looks like he will be Mark's physio for the foreseeable future. The session went well and Mark was upbeat and positive. He asked the nursing staff to sit him up...they said they hadn't had any feedback from the consultant so in the meantime he had to lie flat.....consutltant not available for the rest of the day!!
When we got there at 3pm, he hadn't had the x-ray but there was still time. He hadn't had the touch test but again there was still time. Most importantly he didn't feel he'd had all his medication and that was beginning to bother him. He had a visit from someone in the pharmacy during the morning and they said they were going off to sort out his meds.....he didn't see him again all day. We spoke to a nurse about it and she said he would get his meds at 5pm, around 7 hours later than he should have done. From 3.30pm he slowly began to feel really unwell and as the afternoon went on he got worse and worse. His arms and hands were losing feeling and he began to lose the ability to even talk properly...it was like he was heavily drugged up. A worrying time. After trying to talk to two different nurses about it and getting nowhere, it wasn't until the night staff came on and I insisted they come and see him and try to get to the bottom of why he was feeling so bad. After some investigation involving getting his med chart out from Airedale, it turned out they had changed the timings and dosage of the nerve inhibitor drug from 50g three times a day to 75g twice a day and it caused the side effects he was experiencing. They hadn't discussed the change or even told him it was happening. They agreed to go back to the original dose and timing. It took a few hours before Mark began to come out of the side effects.
So, my opinion of Pinderfields today is not very positive. We obviously expected it to be very different but there doesn't seem any excuse for basic nursing care to be that difficult.
Pinderfields is a brand new building. It's huge and quite impressive to look at and be in. However, at the moment it is entirely without any soul. Maybe that will come as the staff begin to create a community but it isn't that way at the moment. We have to learn to fight more for what Mark needs and keep him positive so he gets the most out of his stay.
Hopefully my next entry will be more positive. Keep your emails coming in for him......it really helps him.
0845 Wednesday 4th May
From Maureen :-
Today (Tuesday) was a big day.
Firstly, Mark's feeding tube came out before he ate lunch...so he really enjoyed his food for the first time. Hopefully he will be able to eat enough calories (can't believe I'm saying that!) to replace what was going through the tube over the next couple of days so he won't need it back in.
Secondly, we were waiting for someone to come from Pinderfields to assess him and give us a transfer date. However, after an update over the phone with his nurse at Airedale this morning, they decided he didn't need an assessment and he could be moved on Wednesday. Good, we're ready for that. Next thing we know, Pinderfields have rung and said there's a bed ready and he can go today - wow - suddenly we're packing up all his stuff and waiting for the ambulance to arrive !!
Mike and I drive over and get there as he's being admitted, then move to a ward. They are going to start all their assessments tomorrow morning (Wednesday) but in the meantime he has to lay flat on his back until they start. That feels a bit of a backward step but we understand that they want to make their own starting point and create his programme from there. So we've left Mark in his new ward, facing a big change and the start of the next stage in getting him back into the real world.
Next entry I'll try and give you a picture of what it's like at the brand new Spinal Unit at Pinderfields.
0945 Tuesday 3rd May
From Maureen :-
Although Mark continues to improve bit by bit everyday and over the last couple of days he has regained a little more movement in his hands, we still get the odd glitch.
Monday afternoon was one of those times. It starts by him trying to cough which then sends his breathing haywire. It was worse than previously, with him struggling to breathe in, with the result he had to be put back on oxygen and have some serious physio to clear his chest. He finally had to be prescribed more drugs to help clear the secretions and allow his breathing to return to normal. They x-rayed his chest and sent some of the phlegm off for analysis. If he is in the early stages of a chest infection they can prescribe antibiotics and get on top of it early.
When he's not struggling with all that, he's beginning to eat properly. When I say properly, the food that the dietician put him on is disgusting so I have been meals on wheels and provided soup at lunch time and made a shepherd's pie for tea, with strawberry fool for afters. We're trying to get him to eat as much as possible so he can have the feeding tube out.
Today, (Tuesday) is the assessment for Pinderfields. Not sure what it entails but hope it's positive. Mark is ready to move on to the next stage.
2345hrs Sunday 1st May
From Maureen :-
We've had a slight hiccup over the last few days. Since the 'trachy' came out Mark has had to learn to cough up his secretions... not as easy as it sounds when you have limited strength in your chest muscles. The first day he did fine and cleared it all. However, yesterday, after four hours of trying without success he was exhausted and had to have medication to dry it up. Luckily the medication contained a sedative and that finally calmed him down enough to relax.
Yesterday (Saturday) they have changed some of the drugs and one of them has a side effect that causes anxiety and he felt worse and worse as the day went on. He's supposed to be trying to eat as much as possible so he doesn't need intravenous feed but as he's feeling so low he doesn't want to eat. It's a real chicken and egg situation
Sunday and I can't visit. I'm snotty and full of cold so they have told me to stay away. I've spoken to him by phone and he had another problem trying to cough up secretions again over night. More medication to help with that but he didn't get much sleep. On top of that he's supposed to be eating more himself so he can have the feeding tube out but the food is horrendous so he doesn't want to eat it. Tomorrow I'm going to try and take him in sometyhing appetising to encourage him to eat.
So the last few days have been up and down but luckily these not so good days are slowly getting less. Tomorrow is another day and hopefully he will be feeling better.
2015hrs Friday 29th April
From Maureen :-
Yesterday Mark passed another milestone in that he had the 'trachy' out. He was so relieved to get rid of it. However, it did bring another tough side affect. Tetraplegics have no thoracic muscles to help with breathing or coughing. The breathing, Mark has under control but the coughing was another big challenge. Any loose phlegm he has on his chest he now has to cough up... so the poor guy spent hours coughing. It was exhausting.
On another positive note, he is beginning to eat pureed food and the dietician is reducing the tube feed, in line with what Mark can eat himself. The last intrusive process to get rid of now is the feeding tube and we hope that will be within the next week.
The last few days Mark has started to look like himself again and is taking great interest in what's going on around him and in his visitors. It's great to see.
Pinderfields have a bed available and are sending their assessment person next Tuesday and from then on we should have a date to move ...so things are rolling on in the right direction.
Please keep your emails coming in for him. We obviously miss our Greek lifestyle but it's great to hear what everyone is up to, here and in Greece.
New UK telephone number for me... . (If I've sent anyone a message with a slightly different number....what can I say...my muppet status has not changed!!!)
1615hrs Wednesday 27th April
From Maureen:-
They've finally got Mark's sleep meds sorted and he's had two good nights sleep...what a difference that has made to his overall spirits.
His breathing is good most of the time. He has an occasional hiccup and still has to be suctioned but most of the time it's good.
He's been playing with a glass (in practise for his first pint!) and his soft ball, exercising his hands and practising hand control. It's getting better and he's proud of himself.
His feeding tube got blocked and the nurse couldn't clear it so they had to replace it. He said it was the worst thing he's ever had done and it scratched his throat on the way down, so it's sore in a different place now. They x-rayed it to make sure it's in the right place..... 'too bad if it wasn't' says Mark 'you're not doing it again!'
Now Mark is talking properly we've had long team discussions about Stoke v Pinderfields. We've got pretty good information about both from our friend Stuart, who spends lots of time at all the spinal rehab units. Although Stoke is probably the best overall rehab package, Pinderfields is a very close second and has other benefits...one being location so friends and family can visit regularly and Mark can continue to build his own social network. It's a tough decision but Mark is determined to get the best out of his rehab and I think he will make that happen. We all sleep on it. Next morning Mark is still sure Pinderfields is a better 'team' choice. He hasn't changed his mind so I explain the situation to Mr Tang (consultant) and a referral letter was faxed straight away. There isn't a bed immediately so we're on the waiting list and they are coming next week to assess Mark.
It's been a difficult decision but now it's made we'll all forge ahead to the next stage.
1700hrs Tuesday 26th April
From Maureen :-
This update is mostly good news I'm pleased to say. Mark has now been off the ventilator for 96 hours as of 7am this morning (Monday 25th) and as of 11am Sunday, off oxygen as well. In other words he's breathing on his own day and night now. Saturday afternoon they put a cap over the 'trachy' which allowed him to talk properly. WELL....he hasn't stopped since. It was a shock to hear his proper voice after so long. He finally talked himself to a standstill Sunday evening.
We're definitely on the countdown now to move, just not sure where we're going now that we're in NHS bureaucracy hell !! Tomorrow will be a bit of a showdown when we assert our 'rights'. The long weekend has made things difficiult with so many people on holiday. We've done our homework though and we know we have the right to choose where Mark goes. It's just a matter of asserting it and hope we win. Keep your fingers crossed....or better still, if any of you out there is actually a 'BIG WIG' in the NHS give me a call..lol!
Although our lives are very limited there are sometimes lighter moments. Mark has a real fancy bed and it can be altered in many ways...and because they know us so well now, we are allowed to alter it for him. Thouse of you who know me well know just what a clutz I can be so my exposure to the bed controller has been limited 'cos Mark was convinced I would fold him up like a fajitas !!!
1830hrs Monday 18th April
From Maureen :-
'Apologies that the updates haven't been as regular but limited internet and many more hours spent at the hospital are the reason.
Firstly, the results from the CT scan were good, they're happy that the screws are in the right place and everything is as it should be.
The surgeon did a reflex test on Mark's legs...ie tapped the nerve point just under his knees.... and Mark thought he felt a 'weird' feeling somewhere in the back of his neck. It's easy to get over excited with something like that but we're taking a cautious view because the mind can play funny tricks for people in Mark's situation.
Friday evening they tried to take the staples out of the back of his head. They'd been in since the operation, ie too long. So they rolled him onto his side to begin the procedure. When he's on his side the lower lung is squashed and poor Mark had a panic attack because he felt he couldn't breathe. They had to abandon the procedure and it took hours for him to settle and feel calm again. It is the most heartbreaking thing to watch someone you love in such a vulnerable position day after day.
Saturday morning, they sedated Mark so they could roll him again and take the staples out. This time it was successful but he was under the effects of the sedation all day, which he hates. More drugs in the evening to help him sleep, so most of Sunday he was drowsy as well. The problem with being so drowsy is that he can't work as hard on his breathing when he's off the ventilator and he has to keep that up to keep on track to be weaned off it.
It hasn't been a great couple of days and Mark is getting really fed up with not being able to talk..... but it shouldn't be long now until he can... and heaven help us when he starts again!
Please keep the emails coming in for Mark... it helps us to pass the time with him.
1925hrs Friday 15th April
From Maureen :-
'Mark finally had a reasonable amount of sleep on Wednesday night. The surroundings he's in are calm and fairly quiet and I'm sure that's having a good affect on him.
We found out what 'the plan' was and basically it was the process of weaning him off the ventilator, which they had already told us but also they wanted another CT scan so they could see the placement of the screws in his neck. So off he went yesterday afternoon (Thursday) for his scan, which is a lengthy process by the time they've transferred him to a mobile ventilator, another machine that reads all his vitals etc etc, then onto a CT scanner trolley, then off for the scan. An hour later he was back but we won't have the results until some time today (Friday). Keeping our fingers crossed that they think everything is ok.
He has all the staples out of the head wound now and that's healing nicely. Stitches came out of his leg wound and that's healing nicely. Most of the other abrasions on his face, arms and shoulders are all slowly disappearing so he's starting to look like himself again.
Movement in his right hand has improved a little more in terms of dexterity and he has exercises to do himself to keep his arms working. Will have him using weights in no time!
Asked the consultant here what timescale we should be thinking of re transferring to Stoke - answer- about a week!! Went into overdrive and contacted our lovely friend Stu who has set things in motion for us there and today I will pass that info onto our consultant who will begin the transfer process from the hospital end. I didn't expect it to happen so quickly but am delighted for Mark.
Highlight of the day, other than the news about Stoke - Mark had his first cup of English tea. His spirits are pretty good considering.'
2000hrs Wednesday 13th April
From Maureen :-
'We had a speedy flight back to UK....3hrs5mins. The pilot was trying to make up the lost time caused by the fiasco of the Greek ambulance not turning up to the airport to pick up the English Doctor, the nurse and all their gear. In the end Mike had to go in our car to collect them! It took about an hour for the handover at Ioannina hospital by the time the doctor had looked Mark over, discussed his notes, got him transferred onto the stretcher bed that he would be travelling on then transferred to the ambulance and out to the plane.
After take-off we travelled north west to the coast then straight up the Adriatic, crossing Italy about Venice area, then an almost straight line to Leeds Bradford. Standing on the runway whilst Mark transferred to the ambulance for the final part of the journey felt like being plunged into siberian temperatures..... it was freezing!! It had been a traumatic trip for Mark but luckily fairly uneventfrul.
Mark was transferred to Airedal ICU and they took the next hour settling him in. When I got to see him he was fairly calm, felt a bit battered and bruised from the journey but pleased to be in a quiet room. The staff have been brilliant.
He has a new 'trachy', new neck brace and new drugs. He's been visited by the surgeons who apparently 'have a plan'. We were not let into the plan yesterday, hopefully today we will be. He was visited three times by a team of physiotherapists who have worked him over, given him posh, sheepskin lined boots to keep the tendons in the back of his legs stretched and also gave me instructions for working his hands and fingers. He's been given breathing exercises to help him build up his lung capacity and they told us last night they would be trying to wean him off the 'trachy' some time next week. They have told him his breathing is good and I think it's partly a confidence thing for Mark to come off it because he's had it in for three weeks.
They found what they thought was a bed sore but after we had discussed it, because of it's position, it's possible it's another small injury caused by the accident. However it has come about it's now being treated
The dietician also visited him and he will be started on solids in a couple of days....so things are moving in the right direction'
0930hrs Monday 11th April
My apologies to all following Mark's progress. I received the following very late yesterday evening but failed to check my emails until this morning..... so it's a little behind hand.
From Maureen :-
Mark is still struggling with his breathing. Due to his position in bed, fluid settles in his lungs and makes it difficult to breathe even when he is on a ventilator. His ventilator settings were altered today to encourage the fluid from his lungs and by the evening he was a little more comfortable.
He is slightly anxious about the journey tomorrow which is understandable but we're hoping it will go without a hitch. It's not every day you get to ride in a Lear jet.... it's just a shame it's under such circumstances.
So it's 'so long to Greece' for now but I will be keeping this blog up to date with Mark's continuing progress and hopefully, in the not too distant future, I will be able to regale you with tales of his prowess with a wheelchair. Think of me as well tomorrow..... I can't take anything on the plane except my handbag, so with much layering of clothes and 3prs of knickers on I will be looking like a miniature Michelin Man!!
Please keep your emails coming for Mark.... they are a real source of encouragement for him and me.
Signing off from Greece....Signing in from UK in a couple of days.
2245hrs Friday 8th April
From Maureen :-
This morning Mark's breathing problems came back with a vengeance. The problem is fluid on and around his lungs because he is mostly lying down. However, they sorted that out fairly quickly ..... then we had a problem with the air bed. It stopped moving the air around so they had to transfer him to a new bed. For the rest of the day he has been fairly comfortable. He was having soft meatballs for dinner tonight.
Our biggest piece of news is that he is being transferred back to the UK on Monday. It has all happened very quickly once Mark made the decision that he would prefer to be back where he understands the language and feels he will be more in control over his progress. At no time during our time in the University Hospital have we had cause for complaint about the care Mark has received but he feels very isolated in a place where he doesn't understand the language and it's very difficult for them to communicate when it is all lip reading.
We began investigating the possibility 3 days ago and we were hoping to get him into Stoke Mandeville or Pinderfields. However, best liad plans and all that......it turns out neither place will take him whilst he still has the tracheotomy in so we have to go back to an intensive care unit. For this first stage back in the UK we are going back to Yorkshire and when his tracheotomy is out we can begin the process of getting him into rehab at Stoke Mandeville.
The last three weeks have been a nightmare...a nightmare that none of us ever think we will have to endure. Every morning I wake up.... and I know it's the same for Mark... and think - surely this is NOT my life. Then the reality kicks in and you do the best you can to keep the spirits up for the person you love while all the time feel like you're slowly losing a grip on reality yourself.
Our lives will never be the same again. However, we know that we do have a future, a very different future from the one we envisaged but most importantly we know that above all we have the support of amazing friends and that has helped us through the last 3 weeks. For that we can't thank you enough.
I will be down in Lefkas tomorrow ( Saturday) to pack some things from the boat (mostly my thermals - it's 'kin freezing in the UK) so hope to see as many of you as possible before I come back up to Ioannina then on to the UK on Monday. There won't be an update of this blog on Saturday night.... I'll be busy probably having a few vinos and pretending for a few hours that my life is normal but it will resume again on Sunday and for as long as Tony wants to keep it going once we're back in the UK.
2315hrs Wednesday 6th April
From Maureen:-
Mark is comfortable this evening, still slightly sedated from having the MRI
The MRI showed that the screws put in during the surgery are holding the spine in a good position.
His spinal cord is good and not being compressed anymore
There is still some swelling around the area of the surgery which will continue to go down over time and may result in slightly improved movement in his hands
The medical team in the ICU are happy that if we want to take Mark home now, he is fit to travel....albeit in an air ambulance.
He is also now taking semi solids like Krema, it's like a weak custard and fruit yoghurt.
1545hrs Tuesday 5th April
From Maureen:-
The updates for Mark are minimal now due to there being little change on a day to day basis.
Today, Mark's surgeon gave me a letter which described his injury and subsequent surgery which is an initial report to send back to the UK to begin the process of organising his care in the UK at such time that he is able to travel back.
Here it is......
"Mark sustained a traumatic fracture and bilateral dislocation of C7-Th1 level with complete(ASIA A) quadriplegia at C7 level (due to a trauma to the back of his head, due to a downhill kart).
On 23/3/2011 he underwent an open reduction of the bilateral fracture dislocation of C7-Th1 and an instrumented fusion from C6 to Th2 with pedicle screws. Local autologous bone graft was used for the fusion.
Post-operatively the patient developed a better sensation, from Th2 level pre-operatively to Th5-6 post-operatively.
His motor funtion of his upper extremities remained unchanged post-operatively
Immediately post-operatively he was transferred to the ICU department for respiration under mechanical assistance."
The crucial words in the above information are "His motor function of his upper extremities remained unchanged post-operatively"....in other words Mark has no feeling in his body below his chest. He has movement in both upper and lower arms. His wrist on his right side is flexible and he can touch his thumb to his first finger and nearly to his second finger of his right hand and he has a small amount of squeeze between his thumb and the palm of his hand. On his left side he has flexibility in his wrist but no movement or squeeze in his hand, although he does have the sensation of touch.
Although we constantly hope that there will be further improvements in his movements and miracles can happen and re-hab can teach him how to use what he has to the best of his ability, we are all having to come to terms with the fact that what motor funtion he has now is what he will have to live with.
Mark remains in the ICU, breathing for some time each day on his own...but for the majority of time, still being aided by the ventilator.
Our biggest task now is keeping Mark's spirits up. Due to lack of sustained sleep and the fact that the ICU here has limited visitation times he gets disorientated and confused....so please keep sending your emails and cards. It really does help.
2215hrs Monday 4th April
From Maureen:-
Medically Mark is still the same....breathing sometimes on his own but mostly on a ventilator today
His mental status continues to be a worry both to me and to his surgeon. He's just not getting enough sleep and therefore is becoming more and more confused.
We really hope that will settle down ove the next few days
2300hrs Sunday 3rd April
From Maureen:-
Mark had a much more comfortable night last night after they sorted out the breathing with the ventilator.
He had physio on his arms today which made them feel a lot better. Unfortunately the amount of physio he gets is limited, which is a shame.
The biggest concern, apart from his breathing, is his mental state - he's the only patient in the ICU that is awake but he doesn't know whether it's day or night or have any idea what time it is and it's making him very confused.
It helps that I'm reading out everyone's cards and emails.... so I'd be grateful if people kept them coming.
Once again, I want to thank everyone who is supporting us. Although Mark can't see anyone it does mean a lot that we know you're all there thinking of him
2350hrs Saturday 2nd April
The stitches have been taken out of Mark's head wound and it's healing nicely.
Although he's breathing just air most of the time they have had problems with getting the ventilator set right for when he needs it so he can sleep. After a session with the doctor this evening that should be sorted and he will have a resful night.
He is able to give himself a drink through a syringe and that has given him some feeling of control...which is good for his mental well being.
1915hrs Friday 1st April
Mark slept much better last night and apart from problems with his collar and breathing this morning he is much more comfortable.
He is now being elevated from the hips up and is turned from side to side more often to help keep his lungs clear.
He is wearing very attactive DVT stockings to help prevent pooling of fluids and blood in his legs and feet.
The best news is that he has slightly more sensation lower down his chest and just a tiny bit more movement in his right hand.
His left hand still fails to cooperate in any movement below his wrist.
2300hrs Thursday 31st March
This evening Mark was sedated as they had problems moving him to change his wound dressing
His breathing is the same as yesterday.
His temperature is stable.
The surgeon is happy that the infection is under control and that the weeping that was coming from the neck trauma has now stopped.
1945hrs Wednesday 30th March
Mark's breathing continues to improve
His temperature is nearly normal but we're not sure of the state of the infection until tomorrow
He is still having problems sleeping but it is hoped to have that under control in the next 24hrs
He is in better spirits as his body is settling down after the operation.
1630hrs Wednesday 30th March
Nothing new to report.
1630hrs Tuesday 29th March
Mark's breathing has improved further and he is now breathing just air, albeit still through the tracheotomy but it is another small step towards not needing it.
He has ice packs around his body to bring his temperature down which is working very slowly.... so they know they are winning the battle with the infection he has.
2145hrs Monday 28th March
Mark's tracheotomy tube has been changed and he is breathing more on his own and mostly air rather than oxygen.
They are continuing to turn him regularly to keep his lungs clear and it seems to be working
He is able to suck water from a large syringe and swallow with no problems
He has a little more movement in his wrists.
So today has been a good day in that there have been no backward steps.
2300hrs Sunday 27th March
The fluid has been drained successfully and he's out of sedation.
He is breathing more on his own, which is a big improvement.
He is breathing more on his own, which is a big improvement.
The fluid build up was from an infection and because he has been lying flat for so long.
The feeling in his chest has moved down a little more and he has a tiny bit more movement in his right hand. These tiny improvements have helped to raise Mark's spirits.
1350hrs Sunday 27th March
The news today is not what we were hoping for. Maureen has not been able to see Mark but the doctors have told her the followingHis right lung has collapsed and they are draining fluid from both lungs
His breathing is being assisted.
He has an infection in the operated on area
His temperature is up
He is heavily sedated
If all the 230 people who checked Mark's situation yesterday on this blog felt the need to speak to Maureen she would be inundated and I'm sure you wouldn't want that..... so please don't try. If you want to speak to someone then please ring Kevan & Linda Whittle on . You can, of course, send her an email onmaureen@options390.com
2300hrs Saturday 26th March
The following update from Maureen after visiting Mark this evening....
"Mark has passed the critical 48hr period after his operation.
His breathing is becoming easier as he learns to breathe through his stomach instead of his chest.
His head wound is healing well
They have begun to turn him regularly to prevent bedsores.
His blood pressure and heart rate are good.
The movement in his arms is back to where it was prior to the surgery, however, very little movement has returned to his hands.
We are praying there will be small improvements over the next few days."
1800hrs Saturday 26th March
Nothing new to report regarding Mark's medical condition.
Maureen would like me to pass on her gratitude to all those who very generously contributed to the cost of her accommodation up in Ioannina. It has relieved her of a big worry and will enable her to remain concentrated on Mark..... thanks very much indeed.
Maureen would also like people to write to her and Mark...... not the commiserations and get well soon type of stuff but amusing anecdotes about any other thing you can think of. Perhaps some of you have recollections of good times spent in the company of Mark. The idea is that she can share them with Mark with the hope that they will help buoy him up. You can write them out in good, old fashioned handwriting and send them up via Kev & Linda or Debbie and Jeremy or you can email maureen@options390.com . So to all the budding writers..... over to you.
1630hrs Friday 25th March
The doctors are happy with Mark's progress and all is going along exactly as they expect.
Maureen is able to visit and speak to him more often than previously permitted
Their son Michael arrived earlier this afternoon.
1300hrs Thursday 24th March
Following Mark's operation last night he is now comfortable and heavily sedated and being constantly monitored. He has been given a tracheotomy...not because he has a problem with breathing but when under heavy sedation there is a possibilty of difficulty in this area....so it is a precaution. There are no complications. It'll be a few more days before he has the MRI scan.
Maureen obviously has an enormous amount to cope with, not just emotionally but also practically..... so a mass of phone calls from well intentioned friends can add considerably to her load. Please ring Kevan in the first instance 6946 354 096.
For expressions of sympathy and support sending a text message or even an email to maureen@options390.com might be the better thing to do.......but don't expect an immediate reply or acknowledgement.
Weds 23rd March
Mark came out of surgery approx 2315
The surgeon said that although taking longer than expected there were no complications and all went according to plan.
We now have to wait a minimum of 48hrs to have some idea of how successful the operation has been.
Until an MRI scan has been completed, which is envisaged to take place on Monday nothing is certain.
More news when we get it!
Mark went into operating theatre 3pm
FACTS ABOUT MARK
From now on the latest factual information regarding Mark will be published on this blog and will be updated at least once a day.
As things stand at present Mark is in intensive care at the University Hospital in Ioannina. He is not on life support, nor is his breathing being aided.
His spinal cord has been damaged. It has not been severed.
He has a line drawn across the middle of his chest, below which he is paralysed.
Above that line he is functioning..... ie arms and hands are working. He can speak, see and hear and has all his mental faculties.
The damage to his scalp has been attended to.
He is due to undergo a lengthy operation this afternoon, with the aim of ensuring that he preserves the use of his upper body. It will be at least 48 hours after the op before there can be any sort of certainty as to the outcome of the procedures.
Mark is very ill and is a long way yet from being out of the woods
The best case scenario for the future is that he will not recover function below the line but will retain function above the line.
Mark and Maureen are both grateful and touched by the wave of support and best wishes from us all but understandably do not wish to have any visitors at the hospital for the time being.
Kevan & Linda and Jeremy & Debbie are giving all the practical and emotional support that they need at the moment.... and their son arrives on Friday.
