This is as much to keep me sane like therapy if you will, If i put it down on paper it helps to make sense of them, 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
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 down; got given a bag with her dressing gown and slippers and shooed 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 my other brother Phil wanted to come up too but i just wanted to be left alone with my own thoughts if i am honest.
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.
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 subsidise 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.
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
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
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 organised 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.
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!
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.