Wednesday, 9 September 2015

So a title supposed to be here then

This blog was started so as to keep all of Sharon's crafting friends from around the world up to speed on her progress.
 
It is also as much to keep me sane in the days to come; like therapy if you will, If i put it down on paper it helps to make sense of it all kind of thing, it will also be useful to look back on once shaz is out as i am sure she will remember very little of the early days in hospital

So consider it a log or diary of sorts.

Please also understand that some of the below info is written as notes, snatches in time and may not flow very well. I am no writer or author and do not pretend to be

There will also be NO  pictures as shaz will not have any taken
(edit Saturday 19th now ok to post some)






Wednesday 2nd


The day of the surgery





Today is the day, arrived at a little before 7am went to the admissions lounge and waited outside until they opened up, not long after going in the woman from the genome project came over and took us aside into a side to do all the consent forms these took so much longer than we would have liked as there was people milling around in the corridor waiting for her, the anesthetist came in and quickly introduced himself to us, then the one consultant surgeon (Asian) guy did that we saw the first time that we saw Mr Radley. There was also an intern/trainee in the room with us and she was accompanying shaz into the theatre to observe the operation.


Before we knew it another woman (maybe a nurse) popped her head in to say they were waiting for Sharon. She was asked to pop on the gown and socks (I had to do the socks as they were ridiculously tight. Then it was a walk down the clerk to the theatre waiting room curtain bit. By this time we were both quite upset and shaz almost at full panic attack stage, she would have had one if she was not so numb. Neither of us was impressed at not having any time or privacy go hug or hold each other before being wheeled of on the trolley.


I gave her a hug made awkward for her being laid own got given a bag with her dressing gown and slippers and shoed out the room.


All this took until around 8:30/9:00 did not think to check my watch. And so the longest wait began, not helped by anybody giving any updates, Rob was going to be on his way soon but I just needed and preferred to be on my own for a while.


Family and friends had been texting as to how things are going and asking if I was OK too, but I did not having any answers about either shaz was in theatre and I was numb/scared/stressed. All I could do was wait out the 8 hours we were told it would take then start phoning for info.


Rob came around and was great, I can't remember who texted or phoned who to be honest but it was actually nice as he could take my mind of things, then later Tim, Curtis and Corbin popped in to check on things I don't recall what time they left. Robs car was parked on the woman's hospital car park up the road and we needed to go and renew the pay and display ticket at about 4oclock. So I paid for 3 mote hours to take it until 7 pm, I had phoned a couple of times but was told they was still in the theatre. It is 7 o'clock and Rob wants to stay longer but I insisted I was fine and I would update him when I knew something.


Another hour passed and I phoned again to be told they were just coming out of theatre now but I would not be able to see her until tomorrow morning.


A very long numb drove home once I had steadied myself and phoned everyone on the progress and lack of news, I remember having breakfast but don't recall lunch but not hungry so maybe I did eat dinner or lunch?


Time to phone and text round everyone and update on what little info I have.




Thursday 3rd



Not a great night’s sleep but didn’t expect it would be


Just of the phone to them they have reduced the sedation and the surgeon has been in to see her, they are happy with her. They need to remove the breathing tubes so I should be OK to see her about 11 ish, they don't need anything brought in as yet. So still have all her stuff in the car ready for her.


I have been in with her for the last few hours on and off, and they have only just managed to get her pain under control as the spinal block wasn't working very well. They dosed her up with loads of morphine etc but that wasn't enough. They have her settled now, they need to do an X Ray so they can see that the feeding tube is in the right place as they need to feed her through it but they could not see very clearly when they first tried it.

She is a little better this afternoon, one of the pain doctors was in lunch time and said (we had also read of it too) how you can end up with chronic pain due to the type of up that will improve once she is healed from the surgery but may not completely go away and will need medication going forward, they are not sure to what extent that will be yet though only time will tell.


Shaz is a lot more comfortable now; no pain just a little discomfort. I have just eaten some dinner (tell you what a whole meal for £3 is a bargain), they must subsidize it with the cost of parking.


Shaz was so high on morphine that she was hallucinating serpents and yet still in loads of pain.


Left shaz snoring so I am happy never thought I would say that I like hearing her snore as until now I hated it.



Friday 4th



Early start again got to the hospital for 9 in the morning lots of pain when awake luckily spent most of the time asleep. Major pain in the afternoon after being turned

They said that she would be in pain but everyone is different, and the epidural has to be in a specific place and dosage just right, also the epidural can only do so much. They have done a few top ups (larger doses) and liquid paracetamol, also morphine to help. We both desperately underestimated just how large this op was going to be. But she is a fighter. The other pain killer they have started her on can take time to build up in the system; they say about a month so that gives an idea as to how long she may need it for :(


Another bad day overall, hate seeing Shaz in pain and crying with it



Saturday 5th




Arrived at 10am had some funny looks from the oriental female nurse looking after shaz, granted visiting hours is from11am but that is only the recommended time it is not set in stone. I was able to have a chat with the plastic surgeon as he (along with other consultants) was doing the rounds about 20 past 10.


After viewing Sharon's flap (this is what they call the section they have taken from her chest to replace the section the removed, I believe it is the base of the spine that would cover the tail bone) he looked rather smug with the job they did on her.


He said that there is not many places that could manage to pull off a job of this scale!


Other docs round later not happy with the amount of morphine being given as can cause the tummy to not work properly. So stopped the morphine and the .2mg of ketamine. Just had a chat with the surgeon and he does not see Shaz leaving critical care for at least 4 weeks and due to all the pain control she has been given she is sleeping too much, this means her lungs are not getting enough work and neither is her stomach, this is why she is not absorbing all the nutrients she needs. They are going to cut right back on the pain relief so she is awake more.


The morphine has now been stopped but if needed they will need to get permission to give it her, they are happy with how she is doing but they don't expect her to be up and about any time soon, another 4 weeks of being turned side to side every 2 hours. The 12 weeks recovery that was mentioned at the start we both took as all healed up etc it is looking like that could be the stay in hospital :(


That could well be end of November if we are lucky.


Stoma was also checked today with me present, noticed it was now an end colostomy ,Sid has now lost an eye the remaining eye is larger so easier to manage. Mentioned the issue with irritation from some of the bags so went to the cargo get some of the salts ones.


Some concerns about the wedding rings left hand and arm is still puffy from the fluids and post op.

Shaz had been showing signs of discomfort and complaining about the back pain crying out help me Doug it hurts, help me Doug I am in pain make it stop, please stop the pain over and over again, so very hard to deal with when there is nothing I can do to help but try to calm her.

She was allowed a .2mg of morphine but that did little, she is still intense pain so another 2mg was given. This eventually took effect, later though more pain came back but this time the tummy, she did eventually settle but not completely I left at 9:30 at night went home and phoned everyone I needed to.


Today was the hardest day of my life by a very very long way



Sunday 6th


Much better day, shaz was sick during the early hours of Sunday morning around 3 am that helped with the pain in the tummy as the food that was being given via the tube was not being absorbed.


A bile bag was fitted to the feeding tube to help drain off excess stuff from the stomach, not pretty to watch it working (think runny pea soup)


No morphine had been needed since then. Still on the epidural 10mg and regular turns side to side.


Shaz is a lot better now able to chat normally, sounds a little more like herself again. Just short chats then off to sleep again. One of the awake occasion's she asked for her nicotine patches so I went to the car to fetch them. Not in the bag I had with me (adamant they was) actually in the case she packed.


Mark (not sure if he is a staff Nurse) nice really nice chap went and fetched some and organized a prescription of them for her.


Note this was after I went back to the car lol

Yay a nice nurse managed to get her ring off YAY thought it may need to be cut off if it got any tighter.


6:30pm they start to do the last roll/position change and I had an I thought bugger should have been keeping a diary of each day, so I am sat in the cc lounge typing this on my tablet waiting to go back inside. A little bit of pain before I went home but not as much, starting to time my leaving to just after she has been turned so I have peace of mind she will be ok for a few hours at least.



Monday 7th


I arrived at the hospital a little after 11am to find shaz heavily perspiring after a bad morning for pain. Shaz was awake enough to let me know why/what happened; but had very little strength so had to get her breath back a few times.


She was in some pain early this morning after being turned recently but was not very comfortable so asked to be moved again, had a cooling wash at about 5ish gown and sheets changed etc. Gave some pain killers but they had started to wear off before I arrived.


They started to give the feed again to try again at jump starting Sid again; she is also able to have sips of water. Oh and she has a hairy tongue now, can’t understand how the hospital can let a patients tongue look like that! Left arm and hand is a little more swollen than yesterday, glad they got the ring off as it would have needed to be cut off.


I asked for some damp wipes so that I cool mope the ole brow and hand so as to cool her down a little.


Sounded a little wheezy even after having just had the nebuliser on so had another dose before Paul (today's nurse) went for lunch, however after 5-10 minutes she started to feel a little sickly so I asked James (other male nurse) take it off for her. She felt better after that.


Was told that the epidural had to come out today as they can't leave it in longer than 5 days due to the risk of infection, they are not going to put another in either as they want to wean her off of it. Not looking forward to when it wears off, some harder times ahead I think.


Everyone keeps saying how happy they are with her; this is really reassuring to the both of us.


Around midday shaz was getting a little muddled, saying she wants to go back to the ward she is supposed to be on, she is sure she was in someone's house, and this was not where she is supposed to be. Tried to reassure her that she has been in the same bed and spot since coming up from the operation but she is having non off it.


Physiotherapist came in to see her again today, was able to do some breathing exercises, did well second time around.


Come back from lunch and she is still talking about not being where she should be and that someone is trying to get people to join a pyramid scheme? ...... A very confused wifelet indeed.


By 7:30 the doc had come over and gave the pain killer into the epidural, he said the patches they have prescribed are 100x stronger than morphine and they have different strength ones, they can also double up on them but nobody has ever needed to.


It is now 8:30 and still in loads of pain, slightly better when the bed was tilted up head end as the block was not working very well, kind of like a spirit level and the bubble needs to be in just the right place for it to block pain in that area.


Hopefully the new patches they give will help and be more effective as all I can do to help is talk to her, give her water and mop her brow. It does not seem enough there has to be more that I can do!




Tuesday 8th


Hoping for a better day today but I think they are just going to get harder until the pain is under control, hoping for a temperature drop. I had a restless night, got up later than I had planned had a shower to try and wake up.


I got to the hospital at just after 11:30. Shaz had had another bad night sick again. They had took the epidural out and the pay he's seem to be working OK. The CT scan had been booked for 2 o'clock, had an update from the nurse looking after her as to how she has been so far.


Shaz says she is able to have small pieces of grapefruit and pineapple to suck on to help with the crappy taste in her mouth.


Started to disconnect her ready for the CT scan, 13:40 the nurse or orderlies come up to fetch her. I volunteer to nip back home as I had forgotten my bag, with my tablet and battery bank.


Go home via tesco and grab all 3 varieties of grapefruit and a pineapple, some burgers and go home microwave a burger do a quick coffee and prepare the fruit and head back.


Got back to find shaz has had the neck line removed, had been in a little pain on her chest from holding her arms up above her head during the scan. It also seems that she may have misheard about the grapefruit and pineapple they was referring to juices not the actual fruit.


She does seem more settled now.


Couple of hours later and she is getting a little restless, and asks for a pain lolly and to be turned. So as it’s a little after half 5 I am off for dinner.


Mmm chicken curry and rice and an apple crumble and custard for pudding not too shabby!


Back from lunch and no change, talk of them popping in a feed IV line into her so. Also I asked the question that had been playing on my mind over the last few days as to what happens if the bowel does not start up soon, will it die back or something? But apparently this is normal and it won’t die back, it will just take time is all


Its 10 past 9 and I Just got one of those looks of tonight’s night shift nurse that is looking after her , and then told she was kicking me out shortly, then 5 minutes later she aid I would have to go


Definitely a better day today, right off home to Tesco as shaz wants the fruit I bought blended and more of it.


Took a Hour and a half to chop blend and sieve the fruit for a piss ant little bit in a bottle, then another ice age trying with little success to clean a sieve off of all fruit bits, wash the blender the copping board etc it is now one in the morning ffs, I am not doing that again; She will be having pre bottled stuff in future.



Wednesday 9th





Shaz will be very pleased to know that I did not forget her dodgy juice :) personally I won’t be drinking it and as a backup I also brought in some grapefruit juice.


Shaz is much better this morning up until the time that the physiotherapist came down. They wanted to stand her up if she was up to it.


There is also


Someone from the nutrition team came down to read her notes and come up with a plan to get some grub into the new arterial line they had fun and games getting in this morning before I got there.

So I stepped out for a bit to grab a drink (found that the restaurant had Aberdeen Angus burgers) so I had to have one as you do.



Came back down to find shaz in a little pain as they could not stand her up as her haemoglobin was a little low and there was a risk of her fainting. They had put her on a transfusion to top it up.
One of the plastic surgeons came around shortly after and made a point of coming round to speak to me and asked if I had any questions at all, I asked about the flap they were always talking about told him what I thought it was and he pretty much confirmed it, a very nice chap.I asked about the length of time the surgery took and he said that there was a little delay going in bit the amount of time was about what it normally takes

.
Basically when they removed the bowel and the tail bone they also took away the skin of the lower back that covers it. The skin or flap as it shall now forever be known going forward was made by taking a strip from the chest area all the way down to the navel , it will be a wicked scar.



I am sat outside the curtain while they re rolled her and taking the opportunity to catch up on this so far so good ☺

Still not as comfortable as she would like as she is lay on one of the air filled tubes that are in the air mattress so stepped out behind the curtain while they drag her down a tad, get pulled up by the staff Nurse for not leaving the ward while they do it.

Having strange fantasy regarding engineers making Barney bear face masks fentanol is some strange stuff, just had the nebuliser back on to help clear her chest

When i got there today they had put an arterial line in and started her on antibiotics. One if the surgeons was about today and explained a little more a out the surgery and how well it went. another came about an hour ago took a look at the wound as he calls in the tummy and said straight away that that was the cause if the infection, he sent the nurse to get the staple removers grabbed some long ear cleaner type things (about 9” long) and used them to poke in-between the staples to open the incision up and drain of the tummy , when she came back with the swabs and staple removers he proceeded whip out some of the staples drain the tummy and clean it out, add some gauze at a wick and told Shaz she needs to move around a bit on her own as that will help push out any infection. All done with me there, I thought he was just going to look at the flap or stitches and look smug like the rest of them.


As soon as he left the nurse looked at me and said I am going to have to re dress the wound and will have to ask you to step out. I am thinking after what I just saw lol a simple dressing is nothing, anyway just come up to the canteen and eaten a steak and veg pie mash n peas with a spotted dick and custard chaser ..... yup still have an appetite

Some pain this afternoon from being mauled and proper pocked about and the nurse is one of these that has to do things in a set way and won’t be hurried, didn’t go and get the fentanol lozenge (lollipop to us) until much later by which time the mild pain turned to major pain and shaz also needed some drugs into her drip to help. But they soon kicked in and she was fine by late afternoon early evening.

She was so well I left early for me at 20.50 I made the point of insisting that should there be any change they are to phone me, But if they are anything like shaz though they will just deal with whatever arises due to not wanting to wake me.

Not a bad day at all, that is 2 on the trot ..




Thursday 10th




Mini update on the juice I made.........it went down the sink; she tried the normal grapefruit that she drinks and it was too sharp, the one I made was a lot sharper so hey ho



I arrived to find the bed had been changed around now side on as a posed to end on, this now gives shaz a view of the ward now rather than just the curtain’s. She had had another night of discomfort down to burning up, they had gave her a few cooling Ice washes and within 10 minutes of me arriving they proceeded to give her another one.


She had managed to stand a couple of times this morning prior to my arrival and the effort has left its mark on her with how tired (worn out not sleepy tired) she now is.


As for the type of night she had after i left well it was a very miserable night as the fever was at its peak so plenty of icy water wipe downs were called for, got to feel for the night shift nurse's as she tends to get very grouchy when too hot . She is not as bad this morning, so it looks like they seem to have gotten on top of the infection as she is back down to her normal temp now and she feels fine.


They had left the bowel of cold ice water behind the bed so I cooled her down a little more, rivers of sweat in the cleavage can’t be comfy, it was a chore but I managed to cool her back down again.


I tried her on the lychee juice drink I bought from Tesco 2 days ago to try but she did not like it; I also bought some blueberry juice I will try her with that later.


She said to me just before the curtain was drawn around the bed for the turn and wash that she really hopes she is not left with this pain L all I could say was that I hope so too .


Back in and within about 20 minutes Mr Radley (Sharon’s main surgeon) takes a look at her bottom and is very happy with her, is happy for the last of the drains can come out, he is also OK with her being on her back for short amounts of time and sitting. I think the plastic surgeon may have a different opinion but I did not say anything.


A little later...


A lot more comfortable now she has been re turned and cooled again although she is drifting off a fair few times, not sure if they gave her something after turning her as she is hallucinating a fair bit and drifting in and out. On one occasion from what I could glean she was talking to the little people her eyes under her lid are darting about and there is huffing and mumbling’s a plenty.


About half hour later and is in a bit of discomfort and in need of a turn, so has that done while I pop of for a cuppa tea. Then the nurse would like to run a heart trace on her as the monitor had a few spikes on it, the trace was fine though.


New lolly as the pain was coming back; nurse warns that they can get somewhat dependent on them though!


She is back in for another scan again tomorrow, it would have been this afternoon but as she can't drink anything without it coming out the drain line the contrast won't stay in, so they have booked her in for tomorrow instead and they will IV the stuff into her but that needs to be made up.


The main surgeon (Mr Radley) who did the bulk of the op (the one we was referred to) came in again to check in her this time timed for while I was here I think. He is well happy with her and wants some of the drains taken back out to reduce the risk off further infections.


Just had one of the tummy drains out, must have been 12” of tube inside it is a wonder it didn’t come out her nose. The nurse is only taking the one out now was going to do the second but it started to drain again so they will leave it in for a little while, this afternoon she has been good, minor moment of discomfort nothing that a position change couldn't fix .


Been having some discomfort towards the end of the shift and did not want to ask Anna (this afternoons nurse) to turn her as she felt she had pestered her enough today. So just when she was going to get the night shift nurse to turn her after the hand over and he had hung the new feeds and solutions a new patient from surgery come out into the next bay he had to help to help set up. So this meant she was a little stiff by the time she got turned and that was about 22.00, I went back in half hour later gave her another cool down to help settle her but did not help much.




Got a feeling it will be a long night for the both Shaz and the poor nurses looking after her as Shaz will get all worked up ,this will make her over heat even more and there is nothing worse than a shaz when she is hot as irritable does not do it justice.





Friday 11th


Arrived at a little after 11:30 as I told Shaz I would set up the –pod touch with the latest audio books and albums for her to listen to. She wanted her 7” tablet but I know she would just drop it on the floor or face plant it, at least the iPod is in a relatively soft case and is old. Then she asked for some of the ones that she had put onto the 32gig pen drive I gave her for her stay to pop videos books etc on. As I didn’t get out of the hospital due to now she was last night until after 11 then drive home update the blog and have something to eat, wash-up empty the washing machine and put the clothes away ( as you can tell I am house trained ), I did not get chance to sort out the iPod until this morning. Well that’s my excuse for leaving a little later.


Anyway as I get let into the ward she is just getting ready to leave for her scan, she did not look impressed at all and called the night shift nurse some unpleasantries and off she was wheeled for her scan. Upon her return she proceeded to let me know as to what happened last night that wound her up so much. As I said she was toured just prior to me going home about 9:30 , well she complained about being uncomfortable an hour or so later and asked to be turned again the night nurse looking after her did not get around to doing it until 01:30 by this time she was well and truly stiff , the nurse would not listen to how she wanted to be positioned and told her how she needs to be, then left her in that position until the morning shift came in, at least that is what I understand happened .


There had been numerous attempts to get a line in her foot as her wrists are all pretty much exhausted, after many tries they went back to the wrist again, some jiggery pokery and it is in.


Another turn and she would like her lolly again more to help her sleep than for pain, but that made her hot and restless so she gave it back.


It is now half 4 and been a while since I had a drink so I am grabbing a quick drink.


Right back to it, spoke to Anna when I got back in and she managed to get hold of one of the plastic surgeons and he has confirmed the following Shaz is allowed to sit, stand or walk for a maximum of 20 minutes at a time but no more than that.


Blood pressure had been high all morning and into early afternoon as high as 200 odd now it’s around 160/80 still high but better than it was, they can’t give her anything to bring it down as they want to limit the amount of drugs that she is having to a minimum.


You can tell she is so much better as she is kicking me out lol. I said i was fine staying with her but she said she would be happier and feel better if i got out of there and chill out play games or something. Especially as she is in no real pain as the single patch on her shoulder is more than coping with it .


She is asleep now/well snoozing anyway and it is 19:00 so i am going home , her blood pressure is now 137/78 .


All in all another fantastic day.


Thoughts


She is loads better in herself, I can see it and every day i get in there, but oh so much more importantly she can feel it too. Shaz is getting stronger to the point that she is trying to pull herself up and sit up. There has always been a light at the end of the tunnel but it has been such a very long tunnel you could not see the end of it. I can clearly see that light now and it is not as far away as we thought. You do notice the temperature starts to get warmer in the hospital around 18:00 maybe it is to induce drowsiness, hopefully she will have a better night sleep tonight


Edit.




Just phoned at 23:30 to ensure all is well and shaz is still asleep :)



Saturday 12th


Another day another poor morning, it seems to the case whenever shaz has a male nurse as for some reason things don't go so well. It also seems to also be the case that whenever she has a male nurse that they have more than just her to look after. When she has a female nurse they tend to be one to one. The result means that she does not get turned as often as she needs or wants to be. Resulting in discomfort barely suppressed irritation and overheating, this then starts to spiral fair bit.




Where to begin ... I take one look at her and know that her patience has been tested beyond the normal breaking point. From what she told me she has been left uncomfortable and the nurse is just never about or tends to say i just have to do so and so, yesterday Anna was making sure Shaz was OK and doing the write ups (notes/paperwork) after she had made sure she was OK first. This nurse will do something then write it down; by the time I write this 14:00 he has been to her 3 times at most.


I understand that he is looking after another patient but he has next to no drive just barely doing what must be done sort of thing almost as if he is not on full money and won’t do more than he is paid for.


So what has been done?


Lines from her wrists have now gone as is the last drain as that was the cause of the leak on her tummy i noticed (see below) and her fentanol patch is now gone.


Right moan over ...shaz has had her roll, got the dressing changed I pointed out was leak from a dressing underneath onto her gown when I came in!, I also pointed out the oxygen mask was not turned on on the regulator (I only noticed as her blood oxygen was down to 94/95) I had asked her to do some more deep breathing to bring it back up to the 99/100 it had been but it would not budge. I then plugged in the mains lead as the battery warning started to go off on one of the infusion machines as he was on his other break (as he has worked so hard.....meow.) , another nurse came over just as i finished doing it . The nurse that helped him to do the turn had got some more ice water in a bowel so I have cooled her down all by 15:30 and re brushed and plaited her hair again.




Shaz has been comfy for a little over 2 and a half hours and a touch of the uncomfies coming on and would like a position change, so I asked him to do it for her when he can. I am getting rather hungry now so plan on going for lunch at 5.....


Mmmmm pork chops roast potatoes veg and gravy and a bread and butter pudding with custard as an old school pud :) and a cup of herbal tea (healthy option) to wash it down.


Back down and shaz is still asleep. She awakes on and off but mainly stays asleep until the nurse lets me know at 18:20 that he will roll her the last time of his shift. Gets rolled and is a little better but laying on her left side is not her most comfy one so I have to tweak her a little more.


20:40 and night shift comes in and it was one of the nurses that she had last week and got on really well with, she promises once she has done the handover she will turn her to her comfy side have a bed wash and make her all snugly so she can have a good night’s sleep.






Musings



I have to say Sharon's restlessness and irritability may be down to coming off of fentanol (she had an extra one that she obviously did not need and the same sort of thing happened then) , she was only uncomfortable at a few points during the day, I believe the only pain control she had had was having IV paracetamol. And the deal with the nurse may just be that she just did not click with him.




Not a bad day as we are still plodding on in the right direction, no pain or issues so all good :)





Sunday 13th


Well I arrived at 11 am to find that Sharon's was being turned over. Why they wait until the start of visiting time is beyond me!
Just tried to be let in at 20 past then again at 11:45 , this time a young nurse came out to say they was just changing dressings as one is oozing a little ,nothing to worry about and she knows I have buzzed 3 times but done worry. I asked her to give me a shout when it's OK to come back in wich in due time she did


In the mean time the visitors lounge had the TV on the Hochanda channel , the one shaz was talking about before she went in for the op. I don't know if she was aware but all it has been showing this morning for the past 45 minutes is teleshopping the same bunch of garden plants! My brain has just about turned to jelly now. I like gardening don't get me wrong but to repeat the same info for now 50 minutes falls into the boring category to me. I am sure shaz was lead to believe this was a craft based channel that was supposed to compete with the likes of Create and craft.


Ooo they are about to leave the set at 12:00 and promise to be back at 13:00 soooo looking forward to that!
Advert break and to be fair the many of the adverts shown would interest her even the gardening segments but the slots are tooooo long Imo it honestly began to feel like it was stuck in a loop and just went over and over about the same stuff!


The above is precisely why i do not watch shopping channels.



My morning moan/afternoon by now out of the way


Been in with shaz for just half hour and they are in need to do something I forget why now told you my brain is just about fried from shopping channel overload ha ha but anyway i get shunted out, as its half 1 i break for lunch. Minced beef pie, mash, carrots and gravy (no pud it looked nasty)


Today has been mainly about getting shaz off the drugs she had been on to stabilize her and when stable they are looking at getting her up onto a ward soon (Yay). But first they have to ensure her levels are OK, her potassium had been an issue but that is now ok.

So they are moving her round to by the window so her body clock can adjust itself back to where it should be, she had been in the corner with no natural light for the last 10 days. She will still be on the same area ward A; it now her bed number is changing from bed 21 to bed 8.


She is all settled in and didn't even wake her as they wheeled the entire bed round.



She awoke about 10 minutes after the move and needed a change again but within an hour she was restless again and had a numb buttock, I tried massaging her leg but it didn't help. So she was turned again and the nurse noticed the bed had deflated a fair bit as although the beds plug was plugged back in, the socket wasn't working so the mattress was almost fully deflated hence the numb buttock, she is very chatty and i ask the nurse if she can have her hair washed as she is desperately in need of it. She gets bed baths but her hair looks and smells like it has not been washed in all the time she has been in there for, i brushed and re plat it for her.




At 17:30 she has another roll and i am off for a break beef curry and rice with a cup of tea. There is talk of her maybe going up onto a ward tomorrow but nothing has been finalized as yet. As she had been having clonidine for the last 24 hours they are now weaning her of that as she can't have it in her when she goes upstairs, I assume it is something to do with the drains?



Am off home now at 20:10 as she is just about to have another turn and then settle in for the night.




All in all another super smashing great day, another step closer to coming home



Monday 14th



Awesome news , Sid woke up this morning ( tummy) with a vengeance and just as soon as there is a bed available she will be up on the ward she still has the catheter in and would rather have visitors when that is out. She has also a tube in her nose that they will be taking out soon. So very very happy now



Tuesday 15th





Shaz has been moved onto the ward now she is on ward 728 bed 20. She has the Tummy line out that was in her nose, she can eat soft food . just had a few fork fulls of pasta and the some of jelly and ice cream ( more ice cream than jelly) funny that ha ha. She is a lot happier now too. . no more tripping out either by the looks of it. I am of to the car to get her bags and a mocha on the way back for her.
a medium mocha is to much as she just manages a few sips so from tomorrow it will be a medium and a small than :)


All in a I so happy i look like a Cheshire cat :)





Wednesday 16th




Shaz has made huge progress today , before i had gotten there with the aid of a walker she got out one side the bed and walked all the way round to the other then back in .


I got her to practice with the lung exerciser where you suck into it and see how high you can get the float and this time she managed to max it out.
Then to top it off while i went for lunch she cleared it with the nurse to allow her (with my help) to walk to the other side the room to the toilet and freshen up , then walked all the way back again .
She is on a mission , so extremely proud of her :)




Thursday 17th




I reckon Marg could be right regarding training for a marathon as she had a walk part way round the ward this morning before i got there . She had also cleared it with Steve the mail nurse that i could shower her and wash her hair for her (still had not been done since she had been in) she once we had caught up that is precisely what went down. Organized some fresh towels and clean gown got her wash bag together and off we went to the shower cubical for what felt to shaz like a make over :)



She also asked me to take a picture of her flap so she could see it , i must admit this part i had been dreading as Shaz being shaz is pretty vain to say the least so her ass being so radically different i expected a mini melt down . but she surprised me yet again :)

I left her getting ready to snuggle down for the night as she was pretty worn out, she did go all soppy on me . You know that fuzzy contented look you see on your tother half's face when they are really really happy . That is the look i saw on shaz as i left to go to work tonight :)




Friday 18th




Well today shaz has mainly been silly and impressive.


Allow me to elaborate , I Had a text last night about half 9 to say she had had a nap and felt fantastic after the shower and thanked me; She also said she was starting to feel creative again and asked if i could bring in the notebook i bought her for Christmas so she could start making notes.
Then this morning I woke up at about 12 am , checked my phone to find not one but 2 further messages from shaz , first is to say that the bags she had been using have started to give a rash so could i take in the Salts ones, these she never has a problem with so i sort out a box. next message could i bring in another pair of slippers as these got wet in the shower and that i would need a bag for damp stuff!
I must confess to not having a clue what she was talking about as i showered her the day before and did her hair and i was very careful to ensure that her slippers and other things were out of the way from the spray of water.
Any way i texted her back and sure enough she had had another shower this morning with the aid of a nurse and she forgot to take her slippers off (i have to confess i laughed more than just a little at that) .
Now the impressive side , she walked with the aid of the nurse (no frame) most the way back to her bed. Stopped the last few paces shy off the bed and did the rest on her own. so the nurse has now confiscated the frame all together.


It gets better. 

When i got there she asked me to draw the curtain round and asked me to move the table out the way. She lowered the bed and slowly got out of bed and walked the 3 paces to me to give me a hug : ) i proper welled up :)

What a trooper.


Wait...........it gets even better


Then she said she had cleared it for me to assist her in going for another walk around the ward , we walked out the bay and past not one but two distance markers so she could weigh herself as she was convinced the amount the scales said she has lost the day before was wrong.
She then walked all the way back with just 2 pauses for steadying herself. I did have my arm under her arm pit in-case she went but it was not needed.


Then the she said as long as the bloods they took this morning come back OK she can have the last of the lines out , when we got back they popped in and took the arterial line out. I don't know if you have ever seen one of these come out but the line that is inside of her (and i am not jesting here) was at least 18" to 24" long , it was like she was reeling in a fish or something .


Not impressive enough for you?




Wait...........it gets even more better (i know poor grammar but it sounds cool)


You remember the surgeon that cleared the infection while i was there , well he has checked in on her a few times since she has been on the ward (as has others) and he is so impressed with her that he asked Sharon as to how long she thinks she will be in for , Shaz says maybe a week to 10 days dependent on her strength , he say no i reckon you will be going home next week.
Now this is just the one surgeon and not the lead one so things could change but .............

Impressed much? I am and so extremely proud of her


Does happy dance




Saturday 19th



Been a busy one today and a soppy one to.


I had a text this morning saying she has ok'd it with a nurse for me to take her out into the fresh air today for no more than half hour at a time due to sitting on a non air cushion, and that i needed to collect a wheelchair from downstairs for her as they don't keep them on the wards. So i get the bag i put together for her the night before, longer nighties , dark chocolate and dry slippers .



Did i mention before how far it is from the lifts to the ward, i don't think i did? Well i kid you not; ward 728 is about 150/200 meters away and the lift , and the lift itself is easily 100 meters from the entrance. Her ward must have the fittest staff and visitors is all i can say.

She had been to the loo to freshen up during the morning but that was about it . So off we go , the long walk to the lift then all the way back to the entrance to and out into the fresh air, i wheel her round to the outside tables and nip in for out drinks.
Then i see mini coffee and walnut cakes waving at me, Would have been so rude to not acknowledge them wouldn't it? so 2 of them and mocha's on a tray i go round and join her for some chill out time, the sun is out and we have possibly the best drink and cake in the world. Nothing could go wrong with that.


Well maybe if i thought about cake to go with drinks while i was upstairs i would have picked up Sharon's gnashers ha ha ha .
Mine was nice though, shaz ended up with a bag to go.


We were sat down wind of the smoking shelters and shaz said she found the smell appalling there was also a woman pacing back n forth behind us with one of the vaper ones and that smelt awful to her too.
Well i got her back a little after time (didn't get told off) nor did the wheel chair turn into a pumpkin which was good as i planned on returning it for my pound back.


To pass the time i manicured her nails applied hand-cream to her very dry elbows caused by the way she mimics a pterodactyl to manoeuvre her self in the bed.



For lunch the only thing Sharon ordered due to the poor choice of soft food was an egg and cress sandwich, side of chips and ice-cream, all of which she promptly cancelled when it came round. Since as i had the chair here still i took my wife to dinner in the restaurant where she had breaded fish , chips and peas:)
Then when i got her and her numb buttocks back (possibly been on them too long by now) she went all soppy on me for spoiling her, the vows i took state for better or worse , in sickness and in health etc well i stand by them.

A By the way


Shaz has a pile of cards in the house on our dining room table , but unfortunately there is nowhere to put them on the ward , beside s shaz said she would rather open them when she is home (which wont be long now by the looks of it) , Shoshi i did take the one in you asked me to and that is now on our book case.


Shaz says to say thank you all for them and the lovely messages 


Sunday 20th



Not much really to add today as i spent most of it driving one way or another ,we had made plans to fetch Sharon's mom and sister today for a visit as Shaz was well enough, which in itself is a half hour drive to get to where they live , then a further hour each way from where they live to the hospital.
Sharon's youngest Mikey and his fiancée KT also visited for the first time today so the ward has been a little busy


The visits went well i think they were impressed with how good Sharon looks considering what she has gone through, but it did wear her out, she said you can understand why they limit the amount of time and quantity of visitors due to how tiring it can be
Then once i dropped them off i went back again in hope that i could take Sharon down for dinner again. But i was too late , tomorrow it is then :)

so it feels like i spent the whole day travelling ha ha
I snook another picture , mums the word so don't tell her.


The bruising on her left arm the round one is from the line that went into her heart, the on in the crook of the arm from the number of times they had to redo the other lines .



Monday 21st



Apologies for the late update all and how short it is but i am doing this one during my lunch break at work at 2 in the morning lol

Got woken at 12 lunch time today by a text from shaz to remind me to bring in some more bitter lemon, and to bring a suitcase to take some of her stuff away in as they are going to be letting her home in a day or two :) the text was followed by an apology for waking me too by the way.


How frigging cool is that, i must admit that my stress level hit the roof when she said that, as while i would love to have her home we both know there is no way on earth she is up to tackling the stairs yet and she still has open wounds that need to heal from the inside out.But i have come up with a plan for that as her plan was to sleep on the recliner (not having that, she nap on it during the day but not all night) I will ask work if i can start a couple of hours later and do my full shift so as to finish later too. This will mean i can help her to bed and get her up in the morning just until she can do it herself.

She would also like to have a small mocha when i get there, i also need to remember a wheelchair so i can take her to dinner later :).

So with the back pack in tow with her clean nighties i get there cant find a chair for her so had to pop back down for one later on.

We both had a nice chicken curry and rice.

Will be nice to have the wifelet back home again 



Tuesday 22 & Wednesday23rd ( 2 Parter )

updating on Wednesday morning



I only managed a relatively short visit just 3hrs yesterday (Tuesday)due to being so tired that i didn't wake up until half three . I tried to do a full shift so left work at 06:15.


Had a text (most likely what woke me ) with orders to grab another wheel chair as the catheter was out now so i could take shaz down for costas then dinner again.


By the way shaz had cottage pie and i had had some weird vegetable pancake and chips that was rather nice.
spent a bit of time sorting out stuff she didn't need to keep at the hospital leaving only and would be easier to carry out in a backpack.


Shaz had said that the nurse needed to see that shaz was able to pee 3 times in order for her to be happy to release her to come home today.


around half six shaz says she feel like she needs a wee so off she tods to the toilet and i stand guard outside , couple of minutes pass and out she comes , saying well maybe she didn't after al.

Well i leave instructions for her to message me to say when she does her first pee (sad right lol) and off i go home to get ready for work



No message received by a little after 10 last night so i send one asking if things are ok and if she had peed yet.


I was busy at work as machines needed to be set, there was a big visit the next day and the next chance i had to check my phone was around half eleven ish (don't recall the time to be honest but i know it was pre midnight) as i felt like going to the hospital


At 10.38 i had had the kind of reply i didn't want,a reply that left me numb with concern at how Shaz must have been feeling, on top of which I went numb with how i was feeling too . My brain went into melt down.


Wednesday 23rd (Part 1)




Well they say things are sent to test us and in our case i would say we feel like we should be stood in the corner with a dunce hat on.


The text read as follows


Hi Hublet.may be a problem.Wet the bed Just. No sensation of full bladder or weeing.was just about to text you and saw your message.may end up not coming home tomorrow.I'll let you know what the doc says in the morning , followed by a lot of crying emoticons.



Well i went back into the office and looked up the phone number for the ward she was now on ( didnt need it before had the one downstairs) and found a quite spot where i could phone the ward to speak to the nurse looking after her, Shaz was asleep at the time so i asked if i could come in outside visiting hours in the morning? to be told i would need to phone at 07:30 to speak to the sister in charge that will be on next.



I left work at 2 am so i could be at the hospital in time for the doctors rounds at 08:30/09:00. gets home and sleep/snooze on the recliner ( yes hypocrite right) with the alarm set for half seven. The nurse passed the message on for Shaz to phone me but would not allow me to visit as they are too busy.


Shaz phoned me at 08:10 to say the doc thinks she has a water infection , it may have been introduced when the catheter was removed , that kind of makes sense as one of her wounds that needs to heel on her belly weeps a lot from the infection she had. She asked for her nighties to be took back in along with her dressing gown.

So want to hug her right now! 


will update with part 2 for today later at some point.

Wednesday 23rd (Part 2)


 


The above phone call to say she is feeling better and not as disappointed as i expected her to be, she is being pretty level headed as she knows that there was no way she (or I) would have been able to cope with the level of pain she was in had she been at home. She sounded pretty beaten/deflated underneath the morphine . I told her i wanted to come in and that i had phoned last night, then again at 07:30 after the shift change but was not allowed to do so.


A little later she called me back to say she had cleared it with the nurse for me to come in and see her for 1pm and hour and half before official visiting starts, and to bring in more lemon squash an icelolly as they are trying to get her temperature down as it was above 40* but no costas or chair as she had been throwing up all night.


She also cleared it with the nurse for me to give her a bed bath of sorts , this didn't happen as i was falling asleep and needed to get back to get some sleep before night shift tonight.

She had had an X-Ray as she was also having some breathing difficulties but they were happy with the results.


Felt so good to be able to give her a hug when i got there , as much for me as her if i am honest.


There is talk of her coming home once the urologists have seen her, The catheter is back in by the way so the pressure pain is no more now. They may send her home with another bag for the pee until the bruising and swelling on her tummy is down, then try again with the removal..


She will be home just don't know when though.

Thursday 24th



Sharon's temperature is back down to normal, but her haemoglobin is low again (borderline) so she may have another transfusion, she is happy about staying in as she said if the infection had took hold while she was at home she would have been in all sorts of trouble.


She has also had another change of scenery as she has been moved to a room of her own (room 23) on the same ward.


So she has her own toilet, sink and shower (so I plan on giving her a shower tomorrow) as they needed the block of 4 for the new patients from theatre today.


She still isn't eating much due to the tummy shrinkage, but then she is not impressed with ward hospital food so she tends to leave it most the time, the restaurant food she is fine with so i will be taking her down there every day just so she can have a decent meal. Incidentally I brought in a cheese and ham panini today along with the costas coffee as i missed breakfast and she managed a little of that so i will be getting 2 tomorrow :).


All in all she is happy, she knows that in maybe a week she will be home either with a catheter; hopefully without, but she will be home soon.


There is talk of the staples coming out Monday , but i am concerned that there is still some leakage from the flap area, so maybe staying longer is for the better.



Friday 25th



Should have known Shaz was not happy today as the house tends to play up, I came down stairs to find the the air-wick air freshener in pieces on the floor in her room next to the book case, batteries and refill in a pile.


As foretold the day didn't start so well for her, the catheter came apart at some pint in the night and sids bag leaked leaving her in a mess, a nurse was asked to help but no help came straight away, the nurse shaz asked to help popped her head in to say she is busy and will be back in a bit, an HOUR later shaz spots Maddie one of the nurses we know who practically drags another nurse down to clean her up and change the bedding, she also had to have a shower .


She still has no appetite a mouthful and she is full even then she feels like she is forcing the food down .


While having a room to yourself can be a great thing for privacy and own shower etc, it can also be the loneliest place when all you have is 4 walls and your own thoughts of not doing very well.
Anyone that knows shaz will know just how Stubborn, self sufficient, Independent, so not being able to do as much as she wants or used to is a very bitter pill to swallow.


With the set back from not coming home, the second infection leaving her weak so it is even more of a struggle to anything, then waking up to a soiled and wet bed it was inevitable that things came to a bit of a head.



So after a mini melt down and many cuddles i convinced her that we should go out for a walk of sorts , see what is out side.


The talk and fresh air worked wonders as she was loads better once outside. when you have been with your partner/better/other half for a while 25 years in our case you see into the soul when you look in there eyes, you recognize there pain/sorry/anguish and the flip side .


Today i saw both sides and for now at least.


Shaz was happy again





Edit

may be coming home either Tuesday or Wednesday next week


Shaz was happy again



Edit

may be coming home either Tuesday or Wednesday next week

Saturday 26th


Not a bad day truth be told, Shaz had a very busy one visitor wise . Her eldest and daughter inlaw came n the morning and some friends came not long after i arrived in the afternoon so soon wore shaz out .


Did manage to shower her but didn't manage to take her out anywhere as time was getting on and she was feeling pretty cold and worn out


She was complaining about being cold , which is not normal for shaz as she never normally feels the cold, but to look at her you can see she has lost weight, even if the scales does not reflect the amount the my eye says has been lost, her hands and face is very thin.


I was aware that she had staples removed in her tummy that the docs placed a bag over to help drain the infection I was not aware that more than one bunch of staples had been removed to aid the removal of the infection, The white tissue that is coming out of the holes (each must be the size of a 10 pence piece) is not a pretty sight i can tell you.


She managed to eat a small amount of rice pudding while i was there but didn't fancy coming down to the restaurant when i went down for dinner.


More than just a little concerned at how little she is eating cant get stronger without eating anything, and i can see sooner than later the need to another TPN drip being used to feed her before long :(



Sunday 27th


The difference 24 hours can make.....



Got there today with 2 bottles of lucozade a bottle of ribina squash and 2 bottles of robinsons apple and black current squash as she was running low, and in fact she had drunk the whole bottle of lucozade and her black dressing gown with snoopy on it to keep her warm on our days out.



So what has she been up to today then? Apart from..... 


 



Walk  ALL the way to the exit of the ward and back on her own 

Eat at ALL of her breakfast Eat 3/4 of her dinner and ALL her pudding.


And


Then for those not on facebook i will fill you in, I took her down to costas again today before our walk/push call it what you like but i know one of us had the short straw and he is busy typing this.

To go along with her mocha I bought another cheese and ham panini and she even managed half of that too :) while i took the healthier option (ignore the fact i just had the other half of last nights mammoth 12" pizza with a cheese filled crust for breakfast) , i shall just gloss over that :) we then walked round to where the owl was then turned right to do a bit of a circuit then back to the main entrance of the hospital , which just so happened to be ALL up hill.




Came away a little earlier today as i need to get some sleep so as to be able to shift my sleep pattern forward for nights again as i didn't get much sleep last night as i had a bit of a late one as my two brothers came over for a quite night in with a few bevies and a some music.

I do believe Shaz is back or at the very least is making a concerted effort to get back.


Does a happy dance ..............then sleeps a bit




Edit


Got up in time for the eclipse and took a few snaps












It is not easy not to feel a little deflated after such a great day yesterday...






Monday 28th



Shaz felt cold , not to the touch but she was actually shivering while in bed snuggled under the blanket, so i didnt take her outside today.
She ate most of her breakfast and almost all her dinner, but her appetite was gone again by lunch time. I think partly down to the penicillin she had been on this last week causing food to pass straight through her so they had started to give her some stuff to thicken things up. resulting in Sid sleeping for a couple of days as he has had little to do, either that or it has gone the other way.


Anyway One of the sisters came in to take a look at the dressings as they needed to be changed again and as soon as she took the dressings off she said that's not right it smells off and offered me to have a sniff and sure enough the one hole smelt kind of odd


Not the most reassuring thing to say when there are two rather large holes in the tummy; one just over the size of a 50 pence piece (level with the solar plexus and at least an inch deep) the other the same depth but the size of a 2 pence and located just below where the belly button should be (she no longer has one so jokingly says she is an alien) incidentally the holes are linked by a windy row of staples that that continue down past the navel.


She flips shaz over to look at the flap and is not happy there either s the seams have come apart on two sections either side of it



Swabs have been taken and a new water sample taken , results from the swab will be back tomorrow but it looks like she has another infection again as she did a test on the water. But they checked her vitals and her blood pressure was up as was her temperature by a degree at 37.7


I think i actually feel more deflated than Sharon does as she is resigned to the fact that she will not be out until the weekend at the earliest, but we will see.


Really hoping they are on top of things tomorrow ........



Tuesday 29th

Where to start.....The beginning seems like a plan.



To say i was concerned as to how i was to find Sharon as in did she still have a temperature, did they start any antibiotics etc was doubled when i say the red hair dye on the pillow as that is normally a sign of either washed her hair (didn't look like it had been washed) or been sweating a lot, add to which Shaz was fast asleep.


paranoia can be a cruel passenger at times as it niggles.


So of i trot to find a nurse or sister to fill me in on things, but the Sister was busy and said she would pop in and see me shortly.


True to her word she did , loudly and woke Sharon, it turned out that the morning had been eventful for a number of reasons, firstly her staples have been removed all 57 of them (not including the ones that were removed to leave the open wounds discussed yesterday) so probably around 65 in total.


She had also almost fainted when she went to have a wash and had to get a nurse to help her back into the room , and they removed the catheter bag and put a tap on it.


They did the rounds and while her blood (haemoglobin) is still a little low (not quite borderline) they were still happy with her. They would have actually let her go home today had she not almost face planted the floor.


Anyway regarding the catheter tap......


We were lead to believe the point to it was to let the bladder fill to the point where you feel like you need to go, well she had been waiting this for a while so by 6pm Shaz decided should give it a try as they wanted her to practice using it to see how she gets on.


Well with me there for support if needed she got off the bed and trotted off to the bathroom to find the bed she left was wet. It would appear that there had been a leek...

It would appear that timing needs to be key as as yet she can not feel when the bladder is full so it simply works its way past the catheter tube.


Anyway they are going to do another blood test first thing and as long as the levels are fine i get to take my wifelet back home, i have spoken to work about having a couple of days off and they are fine about it as i still have 2 long service days so I will be taking those this week finger crossed.


Happy Dance Time

Wednesday 30th



When i finished work this morning i spent a couple of hours doing housework before i went to bed , cleaned the floor downstairs and put some things away in preparation of Shaz coming home

What i would love to write is how i went to the QE for the last time to take home my wonderful Wife, but that is now what happened today unfortunately.


You see 2.5 hours after i went to bed i get a message from Shaz that reads....


Morning Hublet,looks like a change of plans and i wont be coming home today after all.


Bloods came back still showing signs of an infection so they want a CT scan to figure out if its my tummy "Hopefully" it will be today he said, then they have to decide what they are going to do about it , so it looks like a few days yet, :(


Will need more lucozade and squash .XXXXXX.


So that is where we are, She has had 2 lots of IV antibiotics (had to put a fresh line in)



Doing a not so happy dance again ;(

Thursday 1st




Just a quick update as break is almost over



Shaz had her scan and it came back negative, they were looking for anomalies that could be pockets of pus etc but they were happy with them so will be investigating other avenues.


Shaz is well in herself but i can see the strain in her eyes of the prospect of another week in hospital so i am preparing for another crash that will no doubt happen sooner rather than later.


Must come up with a cunning plan to cheer her up to try and head it off......

Friday 2nd


Well not much to say today other than i was a little late to get to the QE as British gas were due out for a service on the boiler that i had forgotten about.


So i phoned on the way to ask her if she wanted anything but she wasn't hungry.




So i grabbed a panini and a mango cream cooler , just after i finished eating she decided that she was hungry so i went down to fetch her a toasted sandwich that Costa managed to over cook/dry it out a bit. Tomorrow she wants me to stop off at a snack van on the way and get her a sausage ,egg and mushroom sandwich on crusty so she cant be too bad :)
I managed to take her into the shower and this time do her hair as well, a clean bird tends to be a happy one from past experience. Well we are half way through this lot of IV so not long now ......I hope



Sharon's youngest son Mikey gave me a little snoopy last night to give her, so picture is included :) 
















Saturday 3rd


Well I said i would grab a sandwich for her and i did , she managed almost half f it too (was not a small one i can tell you. we chatted for a bit and as it was not a very warm day out i decided to see shaz stroll for myself. The times we go out side she stays in the wheelchair so the furthest i have seen her walk is to the bathroom and back.


With the destination of the the exit of the ward as the target (the same point she made it to less than a week prior) we set off, this time she made around 25ft before being exhausted and needing to turn around and come back. While this may seem a set backwards i can't say i expected to see her managing further, You see she has basically stays in bed of late and doing very little, she can lye on her back if she wants and while she has a chair she seldom uses it. She will improve now that she has to get out of bed to use the bathroom now she has a tap on the catheter.


But boy does the effort involved drain her physically, As she says it is a confidence thing as her left leg feels sort of numb most of the time as does her buttock.


So to get a grasp as to what she was talking about i got her to lay on one side and ran my finger from her waist to her buttock and in the direction of the flap and asked her to say when she could not feel it any more. I would say from half way down her but to the base of her thigh neither the skin or muscle has any sensation at the moment. I got her to turn over and repeated the process her right side . This side is better as it is fine on the back until you get close to the flap, then it has to sensation of being touched. while lay on the back the top of the left thigh is fine while the right hand side lacks sensation.


I dare say that she has a lot of healing to do still and a lot of the feeling will eventually come back but for the moment walking is a challenge that she will need to adapt to.



So in the mean time i need to make some changes at home, first of is hand rails on the wall down to the kitchen. while it is not many steps she will need something to hold onto to get get down there.


second is i am going to see if i can fit brackets to the top of the book cases so she can use the fixed middle shelf as a steady on the way through the dining room.



We have also had an update on the IV she is on, that finishes on Monday and shaz is adamant she is coming home then as she has well and truly had enough now!


Lets see what the docs say on that score, i would not want to be the doc that says she cant.


Oh and she wants a Mc chicken sandwich and small fries tomorrow and a very small milkshake .

Sunday 4th


Well I got up early (for me considering i am a night shift worker) and went off to BnQ for a hand rail and hardware for them (needed to make two short lengths) crikey the hard ware is not cheap!


When i get back i have my saw horse all set up and have made my cuts attached the hardware , realised that i left the battery in the stud detector and it have elaked all inside not only that but my spare would not work either even when i swapped out the battery with a known working one. So i had to go back out and get another . cant be drilling into walls of a house this old without checking first.


when i got back Shaz phoned, Her day did not start so well, She went to the bathroom with both hands full an over night bag for her catheter in one hand and sids bag of supplies in the other. She over reached with her right leg so all her weight was on the other and it gave way.


No real damage done thank god a light graze on her right knee and a huge dent to her pride and ego .

I think she is starting to realize that she is going to need help with things in the short term.



I read an interesting article regarding nerve regeneration in Sharon's case it is classed as Peripheral nervous system regeneration and those can regenerate. In some cases you wont get 100% back but you will get a lot back, so all being well given time she should get some (if not most) of her feeling back in her leg and buttock and tummy.


We still have no news on if she is coming home tomorrow as that will be down to the doctor to decide when they do the round, I know how much shaz wants to come home and while i do want her back is am concerned as to how immobile she is. If is going to be hard i am not going to lie but damn it will be great to have her home again after almost 5 weeks.

On a lighter note she damn near wolfed the M'cDonalds down this morning leaving just a small bite and has said she may well go with the same again but will text me to let me know.





On the left is a
picture of said hand rail over the stairs i build not long after we moved in you can see just how steep they are, the kitchen floor is ceramic tiles so you know that will not only hurt but could cause some serious damage.


The stairs could do with stripping back and a fresh coat of varnish now, the right hand picture is from the kitchen.
i will be moving the plant just as soon as i find a more sensible home for it.



Thanks for the heads up regarding changes as i am sure she will really benefit from a wet room as at the moment we have a shower over a bath setup , I bought a chair last week so she can sit and i shower her as her being able to shower herself is at least a month or two off at least.

Lastly i would like say a huge thank you for my card from Debbie rock from somewhere in Scotland.


Sharon has just two so far One from Shoshi that she left instruction for me to take into her, and one from Shaz in Oz as it was sent one to the ward :) she would like to open the rest when she gets home,

All the cards are all very much appreciated, Just as soon as shaz is up to it i am sure she will be blogging about her stay and how you have all helped her cope with this.


Thank you
XxX

Monday 5th

Had a text at 8:30 in the morning to say that she wont be out before Wednesday at the earliest as they want to do an ultrasound scan on her left kidney as they think there may be a blockage in there causing the infections, she told him that she wanted to come home So the doctor said he would try and get her home for Wednesday and change the scan to an outpatient one but he cant promise, she thought about it afterwards and passed a message back saying she may as well just stay put until after the scan.


The docs also confirmed what i found about the day before regarding the nerve damage so we are both very pleased by that, apparently they grow about an inch a month so it will take time is all.



Break time is over so I may update it a little more when i get home




Back home again now,

The McDonalds is a nightmare, it is only 3 mile from the hospital but off different roads unfortunately for me it actually steels almost 50 minutes from the time i have for my visit, as i get there order wait then drive to the hospital traffic that time of day is dreadful, but she is worth it ha ha
anyway where was I... Ah yes there was a physiotherapist in with her and she was just getting Sharon out the bed for a walk, i carried on unpacking the cans of coke i brought in she wanted and new magazines ; not forgetting the all important almost cold by now McD's. and was ready for when they came back into the room.
The physio did a similar check that i did with her as shaz commented on the numbness and said she would pass on the findings to the docs.



I think that about sums it up for now.

Sleep time for me.
Just a heads up, i have changed the comments box to the pop out type as shaz said that sometimes helps with the ones that cant comment, let me know if it helps please.


Tuesday 6th



A confusing start to the day as a lot of the time Sharon's phone sends duplicate text messages so i had taken to just reading the first one if they look the same, well today will teach me to do a better job of skim reading them. I get one text to say the scan is now booked for tomorrow not Thursday and that the plan was to scan her then send her home.

So with her coming home i sorted a place for a bar stool for use in the kitchen and a place to store it out the way and organised what i needed to take, went to tesco on the way out to get her some coke both normal and caffeine free

so all was well and shaz was coming home tomorrow; that was what i had in my head when i left to get her mc'D , however when i arrived she had a blood transfusion going, turns out the other text was sent 20 minutes after and the plan had changed again, this time another 48 hours of antibiotics plus 2 units of blood followed by a day of observation if all is fine and no repeat spikes then she can come home Friday/Saturday.

The urologist came in to see her while i was there and was saying about how the left kidney is not functioning properly and how the one way valve isn't closing allowing the urine to flow back into the kidney, he thinks this is the cause of the infection. there is talk of draining it of via a tube inserted through her back. But he is going to wait on the ultrasound to make a decision. (stents were inserted to keep the valves open but have since been removed).

As for how she is doing , the strain is well and truly showing...on both of us now, she had it in her head she had been in 6 weeks but it is 5 (feels longer i admit) she is starting to get quite upset by how little progress she feels she is making as something else keeps going wrong.
she is also upset that she may not be home for our wedding anniversary Saturday and got quite teary over that, telling her we will have many more and many other special us days in the future and i will be here Saturday didn't help much.


She was a lot better when i left but un-shed tears were still present in her eyes were still there.

Got a text later when i got home to say she was a lot better now and that she loved me etc , so she probably knew i could see them as i left.

It is hard , really really hard . we so need a break but that will be long way off.



Wednesday 7th


Had a text to say she has had her scan , the actually scanned both (i assume the right one as a reference) not had any feed back yet , she also had her walking stick one of the wooden ones with the crook handle and it helps a lot.


You cant beat a sausage, egg & mushroom sandwich with red sauce on crusty bread........Mmmmm heaven, a well known fact that it is the food of the gods so it is. (mine also had rashers of bacon on it)

Especially when it is hand delivered piping hot as i am using the fridge .

She had been for a walk with the stick and is a lot more confident going for a walk now, the physio was happy with how she was using it too and didn't need any instruction for its use either. I suppose when you need one it becomes instinctive?

The sister mentioned when i arrived that she was concerned that Shaz seems to spend most of if not all of it lay in the bed and that she needs to try to be sat out more and encourage her to go for walks etc

Anyway once lunch was consumed (all bar the crust's but that tends to be normal when you are getting full, eat the good stuff lol) i let it settle down and encouraged her to go for another walk, she almost made it down to the exit this time and back with just a slight pause along the way back.

within 10 minuets she had her breath back, so you can see she is getting her stamina back a lot quicker to be honest than she ever did before, its amazing what coming of the cigarettes has done for her.

Around an hour later (about 5 ish) i suggested going for another walk this time the other direction to the nurses station, she looked at me as if i was mad ha ha but she did it with ease in fact she carried on past it for about 20 yards then came back this time no stops. It also gives the sister and idea as to how she is doing.

It goes without saying that I would never push her into doing anything i know she is not up to doing.

Another good reason to motivate her is so we can build her stamina back up as she will need it once she comes back out. I mentioned to shaz somewhat the sister said when i arrived when we got back from the second walk and she was surprised as she had been told all along that she couldn't sit out for more than 30 minutes at a time due to the flap.

Thursday 8th



Just a quick update as i have to go to sleep now, urologist had a different scan done a Mag3 this morning before i arrived so they could see the kidney in action, results were not good.


results came back this afternoon so we had a visit from one of the urologists . Just 24% is working so they are going to perform a procedure in the morning (Friday) to drain it as it is swollen and if possible add a stent (if the valve is shut) or clear the blockage in order to save the kidney.


Shaz is in full on panic attack mode as this is being done under a local so i have just finished work and grabbing a few hours sleep so i can get there to calm her before they take her in.


I am fuming as the first infection was 3 weeks ago now she is at risk of loosing a kidney, i know you can survive with just the one as my brother had to have one removed but surely it should have been checked for performance before this!


anyway rant over need to calm down ready to calm Sharon down in a bit.
The straw that broke the camels back was part of a bale this time!
Friday 9th


Well i finished work at 2am grabbed a few hours kip and got to the hospital for 9.30 in the morning,Shaz was sleeping when i arrived. She was a lot calmer today than i expected (probably calmer that she expected all things considered).


And so the long wait began for them to take the blood test the urologist wanted before they took her down to drain the kidney.


11 o'clock came and we reminded the nurse that bloods were needed as the urologist said that yesterday.


12 o'clock comes and goes and shaz says to me i bet come 5 o'clock they say they cant do it and come up with some lame excuse.


1 o'clock comes and goes so i go up to the desk and ask what is going on lunch time has been and gone and shaz is still waiting, they say they are waiting on the urology department as no time is still showing as to when they are going to perform it. I tell them the same thing again, the male urologist that came in to see us yesterday told the both of us that they will be doing it around lunch time.


One of the military Doctors pass a little after 2 and shaz calls him over and explains to him that she has not had a drink or any thing to eat since last night and nobody seems to know when she will be being taken down and she still has not had the blood test done. so off he goes and gets the gear for the blood tests and does them himself . Then promptly marches off to find out what is going on , It is almost 3:30 by the time he returns and says the urology team are waiting on the imaging team and that it is a case of the left hand not knowing what the right hand is doing and to leave it with him. Sharon repeats that she is thirsty and hungry as she has been nil by mouth since 6am but not had anything since last night, he informs her that the rule is a maximum 30mil s she can wet her mouth is she needs to be no more than that.


At 4.45 ish a lackey from the urology team comes in and says it will be Monday or Tuesday as they have to have someone from the imaging team present and they wont be free until then.


How either of us remained calm and didn't rip his head off is beyond me, I simply said well i am sorry but that is simply not good enough , why was sharon and I told it will be today and lunch time to be specific ? I pointed at the board behind the bed that said NILL BY MOUTH FROM 6AM and said that there means we was ready and that Sharon has had to starve and have nothing to drink all day you need to do better, I even booked a half days holiday at work to be here before she goes down.


Off he trots to call someone.
Shaz asks for a glass of coke, drains it and has another
When he comes back ....Sheepishly i might add there is no change.


Fuming again to say the least , i thought they were supposed to be trying to save the kidney , now they are not going near it for the entire weekend.


So off i get to find a wheelchair (ask the nurse on the way back if i can bring flowers in but i cant bring real ones in) we go down to the restaurant for dinner, vegetable moussaka , twas very nice

I leave a little calmer but dumbfounded at the inept communication between departments as it sounds like the urology department didn't book someone from imaging.


Getting wound up just writing this.


Anyway on a happier note the forged rose i ordered for her arrived today it weighs about 1kg, and its length is around 50cm

Saturday 10th


We both had a lovely day today and didn't give yesterday any thought at all.


got up early again for me and swapped out the socket faces we have either side of the bed for some with dual 2amp usb ports built in like the one below, i also have a couple spare so will be adding one to her craft room for phone charging so she doesn't need to plug it into her pc any more.




Shaz requested another chicken sandwich and large fries this time :) she also wanted the manicure set and the bottle of the Sally Benson hard as nails as her nails needed doing again and also her 10" tablet as she was struggling navigating the web with her 7" .

Also in the text i got from her this morning she had managed to walk almost as far as yesterday again

So i grabbed the the stuff, some more cans of caffeine free coke and went to get the maccies so i could feed the bird (in joke) and set off and the forged iron rose.


After feeding the bird i manicured her nails did not use the hard as nails stuff just in-case as they don't normally like you having anything on your nails as they can use them as an indicator as to how you are. She didn't need it anyway as her nails are pretty hard.
Besides they buff up well once i polished the ridges out that had grew into them as a result of the treatment, that was some work took well over an hour to flatten them.


I then washed her hair and dried it with the hair dryer and re plaited it to stop the tangles and took her down for a mocha and cake as an anniversary treat :)


I so need to re dye her hair when she comes back out as she has lost a lot of the colour, still looks pretty good though and the health of it is improving after each intense conditioning it gets :)


Yup had a lovely day :)

Sunday 11th


Had a pretty restful day today, shaz went for a walk to the exit doors and back before i got there .
I fitted another socket this one in her rook for charging mobiles & tablets etc  without the need for trailing wires from the front of her pc.
 Got got us another Mcdonalds and she also managed another walk to the entrance this time rather than the exit which is further just like we did yesterday. She is starting to feel stronger and can see how much better she is doing, I am very pleased that she can see it too.


 We still don't have a time for the kidney drain n camera thing they need to do or if they are doing it tomorrow or Tuesday yet so i may well be getting a call early in the morning ......or not. Not impressed about that one bit as i could plan my sleep pattern around it but I cant now.



By the way, text colour and background changed by request to make the reading easier

 By the way 2

 I came up with the suggestion of pimping out Sharon's wooden walking stick at the crop as she is determined to make it. IT will be a nice take away for her, so pack your ink, stamps and pens, So spread the word please.



Monday 12th

Today started as it tends to these days with a text update of Sharon's morning, this morning being no different, today's indicated that she had been put on nil by mouth again that was at 8am, no time given yet but had the bloods done again , they cant get a time slot until the bloods were back.
 A little while later she came back with a time of 10.30 the next day. And the urologist don't actually do the procedure it is the radiologists that do it. so at least we have a proper date and time at last.
Also asked for the same mc D as yesterday.

Shaz seemed OK when i got there but you could see she looked pretty broken inside (head wise) or at least I could see it. She had not been out for  walk but did have something to eat lunch time (missed breakfast due to the nil by mouth).
You in nature programs and movie's know when you can see the signs of a tsunami because the tide goes out and the birds bugger off , well I could see the signs were there and she desperately trying to hold it together.  It was just a matter of time and just as she was about to get up so we could go for a walk it hit, it was not a major one , no upturned cars or buildings knocked down, that one is still on the way and she is trying hard to hold it in check.

I get it I really do, If it wasn't for the urinary problem she would be home and she would have had no set backs, and her strength would be greater than it is now. These set back simply should not be there, there was no mention of no bladder control or not being able to feel it being full.
The what if they had operated 12 months ago instead of going through the chemo and radio, then chemo again when they had to do major surgery anyway, it may not have as big an op as it turned out to be now and she may not have been having the issues she now has.
But we play the hand we have been given and strive to control or change what is within our power to do so, In Sharon's case she can and will get stronger, her nerve damage will eventually repair itself (maybe not all of it) but enough.

Take the possitives for what they are, as lets face it things could have been a lot worse.

  • She could have had chronic pain.
  • She may not have been able to walk.
  • After almost 6 weeks of being in hospital , may not have lost any weight (yes I went there.)
  • They could have said there was nothing they could do.
We went down for a coffee before I came away, she was still a little quite but then i think in all fairness she is handling this better than i would have if truth be told.
A little later i check my phone and Shaz sent another text.
Hello Hublet, I've got my head sorted out better now, I'm just going to believe it will all get sorted out and work properly in the end. Might take a while, but it will all get fixed. Just had a drinking chocolate  off the drinks trolley, then will go to sleep. I love you my  Hublet, very much. You keep me sane when my head gets all screwed up .......I'll let you know when I'm back on the ward tomorrow.

I plan on trying to be there though.

Tuesday 13th

Well I didn't manage to get there this morning as i was at work until 4 am , I think i may have been kidding myself if truth be told. 
But shaz told me that she would be fine as she had gotten her head round it yesterday.

I got my morning wake up text about 20 past 12 to say she was back on the ward now and that it actually took about 40 minutes not 10. Totally painless, never felt a thing.
They got the stent down to the blockage so all should be well now. Got a tube coming out my back ( a drain) and has no problem peeing. Can come out tomorrow, see you later , Ill have a chicken legend today.


My first reply to that was in response to the no problem peeing bit, i asked if the catheter was out (got my hopes up) but no it was still in.

They told her she had to have 4 hours bed rest then an hour sat in the chair in case of bleeding. There was also  ops done every 15 minutes for the first 4 hours then two last checks 30 minutes apart.


So with the order taken off i trot to retrieve lunch and go in for the visit.
Sure enough she had a wee bag with blood in it , a good sign in my opinion as it means that kidney has to be draining as it got punctured with a needle hence the blood.

She was in good spirits if a little sore from the needle/camera especially as although they gave her pain killers while they did the procedure she had missed her normal drugs round as she want on the ward. So a quick press of the buzzer and the nurse popped over with them.
She also had a  really numb left buttock so i rubbed some gel into it. It wasn't long before she was pain free again :)

Once she was settle we went for another walk again.

By the way shaz started to read the blog a couple of days back, I think in part to help her appreciate how far she has come.
 She has also opened all her cards over the weekend and yesterday so i will be making a list and thanking you all for both the get well cards, magazines, and anniversary cards when i can round them all up.
I may hold off on doing that though as i know once shaz is out she will want to thank you all herself on her blog.

I think that covered it all so i am back to work .

Wednesday 14

My wifelet is Home ...Nuf said ha ha 

Joking aside, Had a text this morning that read ....

      Hello Hublet, Don't bring a maccies in today -we will get a hot fresh one on the way home. Yes Birdie is finally coming home. All my discharge papers is being done right now, really felt like this day would never get here, so very happy right now Xxxxxx.
She was warned it was cold out side but i said she had the thick snugly dressing gown, but apparently that wont go with outdoor clothes so i had to remember her coat.


we played the waiting game for what seemed like hours as there was a little mixup with the medication due to how many times they was going to release her.  at first she was reluctant to get changed as she so didn't want to jinx it and they end up keeping her in.

But  we didnt care , shaz was coming home, you could tell there were good omens as there was a full rainbow out her window.
 

I had to do a couple of trips back to find a wheel chair ready for taking her to the car with, when i got down to the doors the rainbow was fully out .



Well we finally got out the hospital at around 7pm hit Mcdonalds for a celebratory quick dinner and got home for a little before 8 pm, 

A gratuitous shot of shaz on the couch ha ha




Well shaz managed to navigate the downstairs fairly well, need add a little step down into the dining room.
Out of sheer will power and a struggle she insisted on making her way al the way up to the bedroom.
Not entirely sure it was a good idea though as coming down will be a lot harder.
 Going to need to install some more grab rails in places too. The ones installed down to the kitchen made a world of difference as she managed them with relative ease.
Shall be making some phone calls today to see what we can get help wise.


Friday 16th/Thursday 15th

Thursday

Still finds it a chore to do the stairs, but finds it easier on her bum
We pop up to see the GP and give him the release notes, he is organising the OT to come out and he also sorted an appointment to see the nurse today at 1pm.
Booked a few carpet fitters to pop round to give us a quote for new stair carpet to make the assent and descent a softer experience.
Shaz was really struggling to get down the step to the dining room so I made a intermediate step to halve the height, now she manages it fine without help.

Went out for a meal last too, got quite numb as a result for the wait for the food though, even with the doughnut cushion . 
Friday
Both carpet installers have come out today, one has given us the quote just need the second one to come in now and a date for them to do it.
Been to see the nurse this afternoon to get the dressings changed , she has organised the community nurse to come out hopefully Sunday or Monday and has also organised the supplies for dressings to be delivered to the chemist .
Noticed the heating wasn't coming on so had to get the gas board to pop out, luckily the one the did the service 2 weeks ago left me his card as he was trying to sell us the new Hive heating system, he said at the time as the wife is in hospital he will leave me his number and also knock £50 off of it so it would be £200 instead of £250. 
So as i had his number i called him. explained that i would not have noticed it not working as i hadn't really spent any time here due to work/visiting or sleeping.
He was near us ,came over and sorted it off the record.  turns out the receiver was duff, funny how it worked before. So now he has offered the Hive for £ 150 as a break down  so i have gone for that as it will benefit Shaz.
Basically you can control the heating etc via a smart phone so if she is cold or hot she can turn it up or down from the comfort of the bed or recliner .

Going to do updates every couple of days going forward , that is unless of course there is anything major that needs sharing.



Not a bad weekend in all, shaz is now able to walk up and down the stairs as long as she does it very slowly, it is a struggle but is able to do it. She sleeps so soundly, Still has a dodgy foot/leg but have found a way of massaging it that seems to help,  imagine you have cramp in your foot the two middle toes tend to lock/extend it is that that she seems to suffer with hence why it is so difficult and I think if she had the full sensation in her foot she would be in an awful lot of pain from it; so mixed blessings there.
She can tell she is getting stronger and is able to do a little more than a few days before, she cant see daily gains but in reflection to a few days prior she can see that she can achieve more. 

Door bell just rang and a basket of flowers has just arrived ,at first we thought it was from work but it was from her mom Dot , they are beautiful.

She has actually used the hive heating controls on her phone already too so i am pleased about that , also had the last quote in so will give one of them the go ahead tomorrow to do the stair carpet :) 

Wednesday 28th 

Been a week since i updated this as I am really struggling to find the time to do the updates.
 As she is now blogging herself and has more time she is able to report how she is doing on her own blog.
  Shaz is getting stronger daily now, Sunday we went to Tesco as she wanted to see how she would get on with that.  I had been keeping on top of what we need anyway so we wouldn't need to spend too long in there , so with the right hand on the trolley the walking stick she made it all the way round and only sat down while i went through the self checkout.
 The new cushion I ordered for use in her craft room has arrived it will also come in handy this weekend when we drive down to Wiltshire Friday afternoon.
Shaz has now fully caught up on this blog (with the exception of this post of course) and now fully appreciates just how big an op she has had and the huge progress she has made thus far.

future updates can be found  over at Sharon's blog