It hasn't been a great week

We've had a bit of a set back this week.  Tuesday and Wednesday Mark was in severe pain again but he didn't think it was operation pain but more the same pain he's always had. As you can imagine, that scared him, thinking the operation hadn't done anything after all for the pain he's been suffering.

He rang the consultant's secretary and she said he had to ring his Doctor, the Doctor had to have a quick look at him then ring them back.  On the basis of what the Doctor said, the consultants side kick (an Egyptian whose name I can't even pronounce let alone spell) suggested Mark should come back down to Mr Flints clinic. They arranged the appointment there and then for the next day - Thursday. So we get up early, I get Mark ready and when the carers arrived they helped me get him in the car, I would get some help to get him out when we got to Birmingham.  Off we set.

Half way down we get a call from Mr Flints secretary saying she'd just spoken to Mr Flint as he'd been in surgery all morning and doesn't want you to come down, it's too far to come when he had no intention of admitting him and all they would do is a CT scan and take a blood test to ensure he didn't have an infection. They won't do anything for the next few weeks, he has to just wait it out and see if it settles down. So we turn around and come home again and arrange for a blood test at our doctors. That was done on Friday, we await the results. We were both p****d off, tired, worried and not a little dejected.

His pain has eased a little, the feeling in his hands has changed, not better, not worse, just different. He's having different feelings in his neck and has the weird feeling that he could just stand up.  When he pushes as if to get off his chair and stand up he's got tingling down through his hips and at the tops of his legs.  He's never going to stand and walk again but these are very different feelings than he's had before.  He's obviously going to go through a lot of settling down after that op.

The sun was actually shining today and he came out into the garden with me for a while. The sun felt good, but made him depressed knowing he wasn't ever going to go back to a life with more sun. It's difficult some days.

Home sweet home

We're home. After a nightmare four and a half hour Friday afternoon journey. We were both knackered.  But we're home and that's what matters.

We did have a bit of a hiccup last night and thought we might not get out of the place. We were downstairs in the hospital having a Costa coffee and all of a sudden Mark couldn't breath properly and his chest hurt. We hot footed back up to the ward, put him on the bed. I suggested calling a nurse but he didn't want to straight away.  Five minutes later when he hadn't improved he thought it was a good idea. The Sister put him on oxygen, checked his blood pressure, which wasn't too bad and put a call in for the Doctor.

It took an hour and half before the Doc came.  Long explanation from Mark and the Doc ordered an ECG for that evening - it was after 10pm by this time and Mark's breathing had calmed down a bit. So we settled down to watch a movie thinking it could be more than an hour before they came and did the ECG. And it was!!

Anyway the long and short of it, it was OK and they couldn't think what could have caused it so they've basically just put it aside.

It took hours to get discharged, what a protracted system and the worst bit, a Doctor, not just any Doctor but has to be senior Doctor, has to sign the discharge and when the Nurse went to find him to sign it he'd gone into theatre - bugger - he could be there for hours......... and he was!!

I hope the next update will have some positive news on how Marks pain is really settling down, it definitely isn't the same as it was, it's different but not good yet, so sadly I can't report that it's all good yet.

Definitely moving forward now

The lumbar drain came out today and the stitches come out tomorrow and they've told him he will probably come home Friday ..... thank goodness.

His only worry at this point is he's lost a lot of strength so he's keeping fingers crossed and saying a prayer that there hasn't been any further nerve damage from the op because loss of strength is the first sign.  He's only just noticing it as he's been able to get up. Hopefully it is just a by product of such a big op and will cause no lasting problems.

Definite improvement

Mark had a good day yesterday, they got him dressed and he got up into his chair in the morning for a couple of hours, he can't actually go anywhere because he's still got the stand holding the drain bag for the lumbar drain (I'm not there so I couldn't push it around for him) but he was pleased with his efforts.

He got up again at tea time and ate his tea while in his chair.  He was up for another hour and a half. He was absolutely goosed by the time he got back into bed but satisfied that he had been up.  More importantly, the pain that he's been plagued with over the last 18 months wasn't there.  He was in pain but more operation pain than anything else.

When I rang him at 9pm he was in a deep sleep from all his exertions and thought it was the next morning and nearly had a panic that he'd not remembered anything about the night before.  It took a while for him to come round and understand his time frame.

He's getting up again today and they're talking about taking the lumbar drain out in the next couple of days, after that they have to wait and see that it doesn't keep draining through the hole and if not he'll be able to come home. So fingers crossed nothing else happens over the next couple of days to set him back and he might be home at the end of the week.

What a difference a day makes

Mr Flint, Mark's consultant came in this morning and had a chat and he agreed with the Doctor that Mark really could do with some blood.

They hooked him up about 10.30 this morning and as more blood went in, the chattier he got and the more colour he got back in his face.

Although he's still in a lot of pain, he's brighter and we'll try and get him up for a while tomorrow.  The longer he stays in bed the more of a problem his blood pressure will be when he finally does try and get up.

So, for Mark a much better day, thank goodness.

Another day of ups and downs

Mark's day didn't start well, lots of pain still and very dehydrated .... it's a vicious circle, he's in pain so takes Oramorph, the Oramorph makes him sleepy, he sleeps and doesn't drink, that makes him dehydrated, then he has a headache from dehydration and his blood pressure starts dropping.

This afternoon they've put a cannula back in and put him on a fluids drip, took blood to test for his hemoglobin count and put him on hourly blood pressure checks because it's been as low as 65 over something this afternoon so they got a bit worried about that.

It's 8.45pm now and the first lot of fluids have gone in, his blood pressure has come back up and he's got a bit more colour and has eaten his dinner. However, the Doctor has just been in and said his hemoglobin level is only 7.3 - the cut off level for a blood transfusion is 8 and normal in men is around 11 to 13 so they've ordered a blood transfusion for the morning. Will it never end for the poor bloke.

The lumbar drain is still in but slowed down now and it will be clamped off sometime over the weekend and if it doesn't leak at the wound site again it can come out. 

At that point they may decide when he can come home but that won't be until next at the earliest.

He should be up for visitors if anyone wants to trail down here over the weekend.

Not a good couple of days

When they put the lumbar drain in they told Mark that the side affect of having it in was bad headaches if it was draining too fast. They can control the rate of drain on the collection device hung beside the bed. Yesterday morning he woke up with a headache and asked the Nurses if they would slow down the rate of drain to avoid the headache. A few of them stood around scratching their heads not knowing what to do to achieve this ...... I honestly do fear for the NHS the standard of care overall is rubbish.  There is an odd good person who seems to really care about what they're doing, the rest look like they don't want to be there. Mark had a word about the Nurse who left him waiting to be cleaned up the other night, but I guess nothing will be done about it.

The Doctor checked the wound on his rounds this morning and it is drying out and beginning to heal but they've not said when the lumbar drain can come out.

Now he's got another urine infection and that's making him feel like crap, his poor body is constantly spasming because something is wrong but obviously his brain can't identify it. He's slept most of today in between taking lots of Oramorph, so it's been hard trying to have a conversation with him on the phone (I'm in Bradford for a couple of days).

I'll be back in Birmingham tomorrow so will get a better idea of what's going on and update you.

Another day another small problem

The day started this morning with the sister coming to give him his meds to find that some idiot had put empty packets back into his locked med cupboard and he had run out of 4 of them. Half an hour later they finally located some more, that set the tone for the day looking back over it.

The Doctor looked at Marks wound this morning and because it was still leaking spinal fluid even though they'd put a couple more stitches in, he decided it needed a lumbar drain. This was at 9am, we'll do it later this morning he said. Famous last words, it was done at 6pm, that beats yesterdays five hour wait!! They did this in his room, they put him on his side, bought his legs up into as near a fetal position as possible with Mark, put a huge hollow needle into his spine, fed a very thin tube in, took the needle out and now he's got what looks like a piece of spaghetti wiggling around on his back under some clear dressings, connected to a collection device on a stand by his bed, I don't understand how this works even though I asked, but it does. Now the spinal fluid by-passes the wound and comes out at the bottom of his back. it only took about 15 mins. That will stay there for a few days at least then they'll re look at the wound and if it's drying out and healing it can come out, if if isn't it stays in for a bit longer.  So it doesn't look like he'll be coming home this week.

He also discussed with the Doctor, the fact that the wound pain is settling down but he's having pain again just like he's had before the surgery and he was getting worried about that as you can imagine.  However, the Doctor did say he needs to wait and give it more time to settle down before drawing any conclusions.  Mark is putting a lot of faith in this operation getting rid of the majority of the pain so I am really hoping it WILL settle down.

The Physios and me also tried to get him of bed this morning onto one their commode chairs to do his toilet, but they're tiny compared to Marks and he couldn't sit up straight enough to be able to actually stay on the chair so he had to get back into bed. Poor thing is having to do toilet in bed again, an undignified action he was hoping to avoid.  They started that process just before I left to drive back to up Bradford at 7pm and I got a text 2 hours later saying they hadn't come to clean him up yet ...... that's a disgusting way to treat people. he was not happy. It's just as well I wasn't there, some 'words' would have been spoken.

The physios also bought him up some therabands, stretchy lengths of thin rubber that they've tied to the side and top rails of the bed and he can use them to exercise along with a hand squeezy thing to exercise hands, wrists and forearms.  He doesn't want to loose too much more muscle power if he can help it.

So today wasn't a great day, but we spoke to Mike this afternoon on Skype from Dubai and that was lovely so it wasn't all bad.

Back to theatre

We've had a slight setback today.  Yesterday afternoon he had the drain taken out of the bottom of the wound. This morning after they had finished moving him around washing him it started leaking quite badly.  By 2pm his back and bed were wet through. He was thinking if he felt ok he might try and get into this chair but that went by the wayside pretty quickly.

They called for a Doctor to come and look at it and from then we've been waiting five hours for them to come back to put a couple more stitches in it. Five hours!!

It's just after 7pm and they've now taken him down to theatre to put them in under local anesthetic.

He's not been feeling so great today, a lot of pain and because he's had the morphine pump taken away he's feeling it a lot more.  Hopefully he'll keep picking up tomorrow.

A little bit better

I've had a quick trip home to make sure we've still got one, re introduced myself to the cat, sorted the garden and now I'm back with Mark.

So an update for Mark ......  Friday night after I left he didn't have a very good night, lots of pain but we decided it was probably from having been moved from one bed to another to go back to the ward, he said it was my fault he was in pain because I'd gone and left him.

Saturday morning he was still not good, having periods of dysreflexia (severe headache and raised blood pressure) which is a problem because most nurses and doctors don't know what it is or how dangerous it is. Once Mark's blood pressure gets over 120 it's really high for him, but the Doctor still wouldn't take any notice of him and that's a problem.  Luckily he has his secret stash of GTN spray so he can take it when he wants, but really they need to try and find out what's causing it and sort it out.

Saturday afternoon he seemed to rally round a bit more and had visitors .... thanks Flash, David and Sylvia ..... and last night he slept probably the best he has since he's been in here. Then late Saturday afternoon he suddenly thought the morphine might be giving him the headaches, so the next time he began to get the headache he refrained from taking another dose of morphine and it didn't get any worse. He asked if morphine could cause the headaches and raised blood pressure and seemingly it can .... he's got internet again now I'm here (using my phone as a router), so as soon as I finish this blog he's going to be reading up on it ...... you all know Mark, he'll know more about it than the nurses by the time he's finished!

Today they've taken the drain out of the wound area and turned down the dosage on his intravenous morphine pump. he looks and sounds a lot brighter than when I left him on Friday night and didn't take any time digging into the M&S Caramel Crispy Mini Bites I bought him down.

I'm staying in the hospital tonight with him so he better not snore or I'll be looking for a store cupboard to sleep in!!

Back on the ward

He's back down on ward 407, room 15 if anyone wants to visit over the next couple of days.

We had a few problems with blood pressure going up and down after they had been moving him this morning which gave him a serious headache, but that's sorted out. He's still on oxygen and his own morphine pump for now, he has a drain in from the wound and still lots of neck pain but overall he's feeling a lot better.

Arms and hands have gone back to the same amount of sensation he's had all along apart from the last few months when it was deteriorating more and more by the week.

I think I described his spinal cord as being crushed into a V shape in an earlier blog but I should have said a triangle shape. Am finding out more now as Mark becomes more coherent. I also said the surgeon removed lesions from the spinal cord but Mark has explained this morning that Mr Flint said he removed a considerable amount of cord tethering, which is what he thought he would find when he went in there.  Tethering is what happens when the cord forms scar tissue with the spinal column surrounding the cord and when there's movement it causes pain.

So all in all, so far it's looking good and he's asking for sweeties!!

Not much change from this morning

Mark still in ICU, still in lots of pain but got better colour in his face.  Staying there again tonight, hopefully moving back to ward tomorrow.  Another person who didn't know what they were talking about when they said he would be coming home in 3 days after operation ..... I think it will be next week.

Mark still in ICU, but looking a bit better

Have just been to see Mark, he's still in ICU, still in a lot of pain, but he describes it as operation pain not the pain he has been experiencing. He's heavily drugged still, but his blood pressure is better and fluids are better so his overall colour is better.  Because of the drugs it's difficult for him to tell me much because he's drifting off all the time, but this is what he has been able to explain .....

When Mr Flint was taking out the fixture he found one of the screws had been rounded off so the Allen Key supplied for the job wouldn't fit so in the words of the ICU nurse, Mr Flint had to employ his DIY skills to get it out. But get it out he did.

Once all the fixture was removed they cut the back of some (Mark doesn't know how many) of his vertebrae to see what was happening at cord level. What was happening was that the spinal column was squashed into a V shape by the vertebrae being compressed by the fixture and had nowhere to expand, Mark seems to think that was the case all the way up the fixture but he's not really sure about that. So it seems the operation in Greece wasn't quite as good as everyone thought.

Once they were at spinal cord level they removed a number of lesions, but at this stage not sure where or how many. But it seems Mr Flint feels the op was a success.

I feel three things very strongly now while I'm writing this ....... first I want to punch that consultant at Pinderfields who was adamant it was all in Marks head ..... second, why has it taken so long for someone to take any notice ..... three relieved on behalf of Mark that they've got to the bottom of it and the outcome so far looks promising.

They will be moving him to the ward later this afternoon so more then.

The morning after

Mark didn't get much sleep last night but he is feeling a bit better. His pain is being well managed so he's reasonably comfortable for now. He's being kept in ICU this morning, at least until lunchtime. The're still waiting for the doctors to do their rounds so I don't know any more about what else they did during the op right now.  I will be able to see him at lunchtime so will update the blog then. 

Update

I've just seen him, they're keeping him in icu overnight, he's in a lot of pain, dehydrated, v low blood pressure and generally not feeling too good -  most importantly though his hands and arms are still working just the same, thank goodness and he's happy about that.

They took the metal work out and the op went well but I don't know exactly what else they've done.  Won't know any more until morning now.

in recovery

he's out of theatre and in recovery, they're keeping him there because he's in a lot of pain and they're trying to sort it out

I can't see him I have to wait here in the room until he comes back - don't know how the op even went yet

Still in surgery

6 hours now and no news ...... am getting a bit anxious now

Still in surgery

He went down to theatre just after 1.30, it's now just after 4pm ........ waiting, could be another couple of hours yet.

Seems it's happening

Mark has had all the checks, seen by anesthetist, Registrar, physio and a few others and it seems we're all go. 

He should go to theatre about mid day and op should take about 3 to 4 hours.  Will let you know how he is this evening, at the moment he's smiling but nervous.