Driving Home For Christmas

Yes!........Roger has been given permission to spend some of Christmas day and Boxing day at home. He has to go back to the hospital to sleep, but hey!.....It's better than nothing!
Rob will go and get him at 10.30am. Everything's organised for Christmas lunch, and I'm so excited!

I would like to take this opportunity to thank from the bottom of my heart, everybody who has supported us in their thoughts, hopes and prayers. We know you are there for us and it really helps. Thankyou so much!

At the risk of sounding like the Queen....HAPPY CHRISTMAS TO YOU ALL!

Speaking in Tongues!

Our GP made a house call on Roger on Monday, to review the situation, as it was clear Roger was not thriving, and he has lost 6lbs of the weight he put on lately. GP faxed through to the surgeon's secretary to ask for an emergency outpatient appointment, and this was fixed for the next day at 10.35am. Unfortunately Roger wasn't feeling at all well the night before, so went to bed early, feeling sick. He started to retch in spite of being given an anti sickness tablet. We both had a dreadful night. Roger didn't dare drink anything for fear of being sick. He was vomiting again in the early morning and, as a result of this and not drinking, became severely dehydrated.

An ambulance, arranged by the surgery, whisked us into A & E. where once more the nightmare of finding a vein to cannulate began. Eventually after much unsuccessful prodding, probing and needle sticking, an anaesthetist was called down from theatre, and managed to cannulate in his foot. Desperate measures!

This procedure took so long that he deteriorated further and lost the power of speaking English. It is called dysphasia, and can apparently affect stroke patients and patients with a major infection going on. Basically it's damage to the left side of the brain that is concerned with language and communication. He had it once before on the ward, but he had a cannula already in then, so they could instantly give him intravenous antibiotics, and within the hour he was speaking English and making sense. This time because they hadn't managed to find a suitable vein the time lapse was greater. Therefore, so was the damage! It was very distressing both for him, and for me to witness.

He certainly had his 15 minutes of fame in that he was rushed through from A & E to Rescussitation and surrounded by senior doctors both surgical and medical. A doctor from ICU came to check him over, and take arterial bloods, which he managed to do gently and expertly. By this time they had both antibiotics and (I believe) plasma dripping into Roger, and he was improving in colour, and also became calmer. Then he was taken to XRay (chest) and then back into the 'hellhole' they call A & E.

We originally arrived there just after 9.00am and by now it was 6.00pm. There wasn't a suitable, available bed in the whole hospital (they said he must have a high dependency bed with constant monitering) so he had to wait. I asked the sister "How long will it be?" She told me that the guy before Roger in the same bay, had just spent all night there waiting for a bed in ICU and he'd just got one. I sincerely hope he was still alive to reap the benefit!

I had to get home, and so it was with very heavy heart that I left Roger at 6.15pm, still unable to voice his needs. Rang the hospital just before 9.30pm and Roger was still in A & E. Went to bed exhausted at 9.30pm and slept until 2.30am. Awoke thinking of Roger and knew I wouldn't get back to sleep before ringing the hospital. Eventually tracked him down to Lister Ward, which made me very happy, because he's been there before, so they know he is compos mentis and will quickly realise that it's due to dysphasia and not dementia, if he starts talking nonsense. Secondly I know they are attentive on that ward, so his needs will be met.

With this knowledge, I fell back to sleep instantly and didn't wake until 6.30am. By 8.00am I was in Waitrose doing a Christmas veg & grocery shop. Figured it best to keep occupied!

Got back: The phone rang, and it was Roger saying in plain English "Hello! It's me! I'm on Lister Ward! and I'm feeling a whole lot better!" He sounded great! He said "It's funny, but I can't get my head around one or two words!" He remembered nothing of the previous day.

I looked up dysphasia on the net and it stated that speech can recover to a greater or lesser extent with time, and the odd one or two words we can soon work on. He was more or less back to normal.

It is obvious to anybody that anything Roger eats or drinks leaves his ileostomy before any absorbtion takes place. Hence, he will never be able to get back to be fit for more surgery, by this route.

I told them in A & E that I cannot live through this again, and I'm not willing to put him through it either, therefore I insisted that Roger be fitted with a 'picc line' (a cannula that stays for weeks, possibly longer, wired in under a local anaesthetic) he can have both fluids and nutrients fed into it without going through the stomach. He can, of course eat and drink as well.

They said it was possible, and I must push for it, so I spoke this morning to sister on the ward. I told her that 1.) I am not willing to have Roger home unless he is fitted with one, and 2) I believe it is crucial to Roger's survival. She said she would convey that to the surgeon on my behalf.

I went in to see Roger this afternoon and, as we talked, a porter arrived and announced he had come to take Roger to have a picc line inserted. Hooray! This way lies success!!

Three Bags Full!

We continue to treat the abscess with antibiotics, and eat well, weight has increased by 8lbs but on Wednesday evening it all went wrong. The abscess broke the surface like a blister and it went everywhere! We replaced stoma bag after stoma bag, but could not get one to stay adhered to the skin for more than 5 minutes at a time.

We tried to catch a Stoma Nurse at 5:30pm by phoning the hospital, but they'd gone for the day. We struggled on through the night and then had the idea that in the past the West-Call Doctors (overnight service) gave me a jab to stop me vomiting maybe there was a similar jab to disable the bowel overnight so we could get some sleep and regroup the next day. No! there wasn't but he offered for the 'out-of-hours' Nurses to call. He said "They may be able to help with dressings or other stuff to get us through the night, or I could organise another admission." No! No! No!

(for those of you counting - that is very sad! - I've had a total of 11 admissions, 5 since August '11)

The Nurses arrived about 2am like 'Cagney and Lacy' and were very supportive but had pitifully little equipment, anyway, we had worked out by then what the problem was. Where the abscess had broken the surface it was underneath the flange of the stoma which breached the seal - hence all the blowouts. We cut a scallop in the side of the flange and the Nurses fitted it with an absorbent dressing.

By morning it was a mess again. It seemed that overnight the abscess had sprung a leak somewhere else, in a more helpful place away from the other bags so we could now get a good seal on both - Hurrah!

We waited for the District Nurse, Sally, who had the brainwave of trimming a bag and fitting it over the new abscess outlet, and it seems to be working - except I now have 3 bags!

After lunch our GP's locum popped in and got some bloods from my foot - not best place! but desperate times require desperate measures! She also added 'Metronidazole' to the other antibiotic I'm on. - let's hope we have a quieter night tonight. We are both exhausted!

Home Is Where The Heart is!

I stayed in hospital until Sunday (11th) CDU then 'Kennet' ward again. I had a painful swelling beside the stoma - infection! A very good Registrar, Simon managed to get a cannula in my hand, no mean feat! he put me on Anti-biotics intravenously, which are always better than oral anyway, and with my poor absorption, the best way.

I just 'cap napped' last night (Sunday), as the bag only goes 2 hours before it needs emptying - miss it by oversleeping and boy! will you regret it! - everywhere! I'm still staggered how quickly 2 nurses, or care assistants even, can strip, clean and remake a bed - with you in it! - you could hold your breath that long! and all the time they're smiling! It's the old tablecloth trick!!

(home now) Last night (Monday) I had a bad night - the bag leaked at 3am, cleaned up (half-an-hour!) and it did it again at 7am, no real idea why but added a 'horseshoe sticker' to the place where it went both times and it held.By good coincidence we were seeing the Stoma Nurse at 9.00am this morning, Rob and Connor took us in to the Royal Berks hospital. It was a very useful session, and we managed to 'bag' some useful spares for emergency survival kit.She gave me lots of encouragement, so I came home feeling more settled.Somehow amongst all this chaos Suzanne managed to get the tree AND put it up, decorate the conservatory, come and get me from hospital, cook a dinner and a million other things - she's amazing!

First the Good News...........

Roger has been doing so well lately, especially after giving him vast amounts of salt in his diet (on the advice of the consultant urologist) resulting in the disappearance of his breathlessness and nausea. The way the Ileostomy is constructed, there is virtually no uptake or absorbtion, rendering it virtually impossible to poison him with too much salt, as most leaves the system before absorbtion takes place. His stamina is such that he can now stand up to shave, a task which was hitherto impossible without collaspsing onto the loo seat and gasping for breath. That's the good news!

Unfortunately he awoke on Friday morning with a painful swelling around the stoma. The district nurse took a look and called the GP in. The GP took a look and said it was an infection (collection of pus) which will probably have to be lanced. The surgical team was consulted and the outcome was yet another admission to the Royal Berks Hospital. I will be going in to see him later on today to find out what has been done.

Those of you who know Roger well, will realise that he 'proudly' exists without a mobile phone, so I cannot contact him in between visits, which is a shame.

Trying to erect the Christmas tree for him to see when he gets home. If only I could find the Bl...y lights to go on it !!! The search goes on!

Third Day Lucky!

Since it was discovered that Roger was very low in salt, he's been having extra salt in his food. The result is that the retching has ceased and he hasn't felt the slightest bit sick in the last three days. He is also steady on his feet now, which means I no longer have to get up in the night with him, for fear of him falling when he goes to the bathroom.

The other good news is that he's gained 4 lbs in weight, which is the icing on the cake.

I hope I'm not living in a fool's paradise when I say I think we may have turned the corner now.

Like getting Blood Out of a Stone.

Roger has been feeling queasy for days. Nobody knows why. GP thought to repeat the blood test for potassium levels, which were high last time he was in hospital. The new results were raised it's true, but only slightly and not enough to cause concern. We were hoping this was the culprit, at least we'd know why he's feeling groggy. It showed sodium level to be low, so I'm putting salt on the food he will eat. Low sodium would account for him feeling woozy.

In spite of anti emetics he goes to bed feeling sick and wakes in the morning feeling sick......it's no way to live!

The phlebotomist has earned her money this week, getting blood out of Roger. She is very experienced in such matters, but she said he was the worst person for getting blood she'd come across in her whole career. He is now two and a half stones lighter and actually weighs less than me now. The quest for feeding goes on!