Where have we been for the last few weeks

The best way to describe where we've been is hiding. The weeks since Mark came home from hospital haven't been the easiest. Mark has had a day here and there where he's felt OK, he's even had a few days out.  He's been up for a short while while visitors are here but in the main he's spent a lot of time in bed in pain.

We had high hopes for the operation, we had a lot pinned on it curing the worst of his pain, the horrible pain that makes him reach for the oramorph and take to his bed for a few days at a time. We've waited patiently to see how the op had changed all that, but the reality is it doesn't look like it has. I haven't felt like writing about anything negative, living with it is hard enough. I really wanted to tell everyone that we've had a leap forward and Mark was suffering a lot less pain, but I can't. When Mark is not in the grip of that pain it is obvious that his body is still settling down from the op. That will take some time still and now and then he does feel different, so there's still hope, but we both think it's slim at this stage.

On top of that, he's on his second lot of antibiotics for a chest infection, they take a lot longer to clear when you're stuck in bed and he's on a course of antibiotics for a urine or kidney infection, they're not sure which it is. As soon as Mark starts on antibiotics it makes his bowels go crazy, so there's a lot of changing of clothes and washing going on - I'm sure I don't have to explain that any further, your imagination will do the rest!!

I have to finish with something good ..... my veggies are growing like mad and I'm starting to eat my early harvest, every minute of my spare time is spent in the garden and the work helps keep my slim grip on sanity. 

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.