My weekend!!!

[Heady]

Hi, had a "lovely" weekend!!!! S woke me up on Saturday morning, managed to get out he was in pain. Gave him some painkillers, hoping that would work. Didn't appear to touch the sides. Rang the rapid response team, (who are meant to rush out, ha ha ha!!!) they told me to ring 111, after a couple of questions the ambulance was dispatched. A wonderful paramedic arrived reasonable quickly. Both of us presumed it was S's catheter playing up, an infection or something. Finally ambulance arrived 2 1/2 hours later, three hour wait in a bloody freezing corridor. I ask you, who designs these places? It's a brand new hospital and the only place for people who come in by ambulance can wait, is right by the main door!!! Finally got S seen, X-rays on everything. His minor UTI, that I thought he had, turns out to be a bowel problem. First thought it was a floppy bowel that had got twisted. Apparently, this is VERY common, in people who don't move around much, (another worry for us, that nobody as mentioned!!!). Decided it wasn't that, mostly likely to be impacted upper bowel. Have tried an enema, which out much success. Put a tube up inside him, to see if they could get rid of any wind. Wouldn't stay in! Today they are going to shove a camera inside to see what's going on! His poor bottom!!!

I knew I was tired before, but oh, how little I know!!! Didn't get home from hospital until just before midnight on Saturday! Went in on Sunday, but once they said he was staying in, I went back to my sisters. There was a Mother's Day party going on, but I (for once!!!) took my own advise and went straight to bed for an hour, before I joined in the celebrations. Mostly just sat in a stupor, not really aware what was going on! Feeling a bit better today. I have my counselling session soon, then I will crawl up to the hospital, but won't stay long, if he is not coming home.

I have had to do this before, spend a whole day waiting around hospitals, without food or drink. But, oh boy, has it knocked me this time. I know I a bit older, the stress levels, while I didn't realise, must of been high. But mostly I have come to the conculsion, that I am so close to my limits, any little thing out of the ordinary, can really throw you!!! So my thought for today, "We must all be aware, that unplanned hospital visits, are GOING to happen, so there HAS to be enough gas in the tank, to cope with the extra pressure. None of us, must let ourselves run on empty, like we ALL do!!!!" Haven't a clue how to achieve this wonderful state. Any ideas????????????????????????

Lots of love

Heady

[jzygirl]

Oh heady i do feel for you.

We was very lucky when Brian got bunged up. Between the 2 older matrons and myself with help from mega amounts of laxido and a couple of emanama we got him sorted without having to go to the hospital.

Must admit that several times over the course of him getting cleared out i did wish him in hospital. His bowels were explosive and we never did time it correctly so that he was on the toilet for his explosion.

So at least someone else will have the messy job with S. Try and do everything in a relaxed manner so that you are not exhusted when he comes out. Big hugs Janexx

[Heady in reply to jzygirl]

Yes, I am glad they had that job!!! Waiting for the big guy to get back to work. I thought the weekend was Saturday and Sunday now and that the days of consultants only working three days were gone, but no! The old ways still rule. Still don't know what's wrong. Scan shows a blockage, but camera says different!!! Hey ho. Am trying to do things slowly, not spending hours on end at hospital, waiting for them to decide if to send him home. I made the desicion today, told them he either came home there and then, or wait until tomorrow. I was far to tired to look after him!

Thanks for the hug, needed it!

Lots of love

Heady

[Doglinton]

Oh, Heady, how horrendous !!

Last night I had a good nights sleep and recognised the major difference it made to me , and therefore to Chris. All much lighter. But we're not in control of sleep, are we ?

I dread the hospital emergencies. Each time I tell myself to have a bag ready like one does when pregnant, with food, drink , wipes etc. I still haven't, of course. Must do !!

Hope things are getting sorted.

Keep us in the picture.

Love, Jean x

[abirke in reply to Doglinton]

Good idea on a "Hospital bag" at least one thing one does not have to worry about. a long beach towel or small blanket would also be handy . One never knows what the temperature will be in those sort of environments.....

AVB

[Heady in reply to Doglinton]

Good idea. Water should be at the top of the list. Had to go from 1.00 to 11.00pm with nothing!!!

Lots of love

Heady

[jzygirl in reply to Heady]

I have got a hospital bag ready in the bottom of the wadrobe. In it i have got all the necessary for Brian ie pj's list of medication and a couple of days worth of tablets and of course toiletries . Also i have got a tote bag for me. It has got a purse full of change for the vending machines my spare phone charger and a book, wet wipes spare knickers and a travel toothbrush and tooth paste.

So all i have to do is grab a couple of packets of mini chedders and a couple of drinks dump my handbag in the top and off we go. So far it has saved my life and my sanity on several occasions.

Because i don't drive and we always ended up going to the hospital by ambulance and spending hours before he was assessed and then allocated a bed i always seemed to spend the rest of the night in a chair next to his bed or trolly.

Will say one thing our hospital has got a fantastic restaurant and i always dash in 1st thing to get a good cooked breakfast.

Janexx

[Heady in reply to jzygirl]

Does our life never end in learning lessons! I do have a list of his meds, in various places. The wash bag was packed, bar, I had nicked the shaving soap! What would be a useful addition, a list of telephone numbers. All the appointments I have had to cancel, so had to come home to get the numbers.

Did score serious brownie points, with a very nice young doctor. I had a list of S's fluid in and output for the last few days!!! Guess I knew this was coming.

Certainly going to try and get a bag together, when he is home.

Hope Brian is performing as he should, now!!!

Lots of love

Heady

[jzygirl in reply to Heady]

As i am smart phone (addict) owner i have got an app that is a planner (calander) and i do put all apointments in that. And i do include the who and where and a contact number.

I sometimes think i am ocd with being organised.

Janexx

[Heady in reply to jzygirl]

I do keep my diary on my phone, but until now hadn't thought of adding phone numbers. On my list to do!!!!!!! I know, I will take my manual diary up to the hospital and do it there!!! Thanks Jane. Another problem sorted!

Lots of love

Heady

[abirke in reply to jzygirl]

Smart all the way around, Jane!

[abirke]

Heady I so understand your exhaustion but as of late I also have understand the pain your husband is in......The pain I have experienced the last few days has been excrutiating....luckily I can solve my own problem......but I could literally feel the blood drain from my face as my stomach would harden as gas filled me up like a balloon.....my stomach on one side would actually be hard...like when we were pregnant! ohhhhhhhh...poor S poor me! so I talk about my own personal problems to give this message to S......AVB feels your pain dude, take deep breaths and focus on something else and try to relax. The more tense the harder it is to relieve oneself!

And remember people fart every 12 minutes or so....if you haven't in 20, start telling Heady there's something wrong....before there IS something wrong!

Keep your Sunny Side Up

AVB

[Heady]

That's one problem with the catheter. You don't notice the lack of wind, I suppose I should have been aware, I could breath a bit easier!!!

Lots of love

Heady

[Amilazy]

Heady Sorry to read your horrendous experience, hospital bag is fantastic idea, so far not had A&E visit since last year PEG episodes. So far this year things including ambulance visits have been resolved at home. But it does not stop me from hitting the wall, luckily sister in law arrived and ordered me to bed for 4 hours and then the same last week. As you have said thank god for family. Hope S is sorted out and meantime you get some well deserved rest.

Hospital bag suggested contents, blanket, water, chocolate bars and a book/kindle (mobile phone or iPad but only if wifi available). Already started making a bag but I think I am in for a bad night M already had bad choke, Botox does not seem to have worked and saliva very bad, I think the next time I have to call ambulance for her it will be A&E.

Best wishes for a quiet night Tim

[abirke in reply to Amilazy]

Poor Tim and M...what is A&E (hear in the US that's Arts and Entertainment channel on the TV doubt it means the same there, eh?)

I like the contents of hospital bag....definitely need a good book and something to eat...6 dollars for an old egg sandwich from the machine is just foolish...in more ways than one!

Well I do hope you and Heady have some time to sleep. Does M have a suction machine (sorry can't remember anything) B is still able to independently use his and the ohternight he had quite the episode....I Heimliched him but not very well ....I got him to use the machine and for the next twenty minutes he slowly removed crap from his throat.....he'd been eating crackers....a rarity as he won't eat anything, but he must have been hungry... I could hear him really going after them...and in the back of my mind warning flags are flyin' but I just ignored it tll I regretted it !

Stupidly Yours,

AVB

[Amilazy in reply to abirke]

Hi AVB, as I think you worked out A&E is (accident & Emergency) I think in US the equivalent is ER or was in the George Cluney tv series back in 80's. But like the idea of arts services might relax M better than hospital. I thought our sandwich machines were bad but $6 (about £4UK) is over the top.

We tried suction machine but M bit end off so caused a coughing spell so nurses took it away. Luckily she cannot get at food or she would try tasty things chocolate, cheese or biscuits(cookies) which would cause issues.

Not stupid at all just another learning point.

Best wishes Tim

[cabbagecottage in reply to Amilazy]

Have you tried glycoppyrronium for the drool it dries up secretions as well . It's the only thing I have found helps with the adverse effects 

[Amilazy in reply to cabbagecottage]

Hi tried Glycoperonpium for about 14 months.  Great initially but by March up to 8 tabs a day with little effect, seems body or saliva glands builds a tolerance to it over time.  Great as first call, now on Botox and Pro-banthium ??? Sorry in nursing home so no access to correct name no where near as affective as early Glycoperonpium doses but does provide small respite periods from drool.

[Hidden]

Heady here's another big hug from me. As I continue to read the posts on here I realise how lucky we were in terms of Chris' care as he was never hospitalised. you are always telling people to look after themselves so now it's my turn to tell you. Get as much rest as you can while S is in hospital. Sleep, sleep, sleep and more sleep till he comes home. Love. Pat

[Heady in reply to Hidden]

Thanks Pat. I am trying sooooo hard to practice what I preach! But it's made very hard. If only they could give me an idea of how long he will be in there, it would help. This constant, " well the doctors haven't made their minds up yet, it could be today!" Is driving me mad. It is impossible to rest, as I don't know what I am doing. Yesterday, they said that at 3.30pm, so I told them, it was now or tomorrow! There was no way, I was staying all evening, waiting for them to decide! Any way, had a good nights sleep, taking it easy this morning, then I will go up to see him.

Lots of love

Heady

[Katiebow]

Oh dear Heady, what an awful situation, I do hope he is more comfortable today. I haven't had to call the ambulance for Ben yet but know it is going to happen, will take the advise given by folks here to make things a bit easier when it does happen. I do hope S is more comfortable today, quite a 'Mothers Day' for you. At least you were with family who understand your situation and can support you to an extent. I never dreamt that this horrible illness would impact on life quite as much as it does, it's relentless and cruel to all concerned. Love Kate.

[Heady in reply to Katiebow]

Hi Kate, it's so draining isn't it? If only the goal posts didn't keep moving. Every time, I think, "it can't get worse than this, can it? The reply is always, "OH YES IT CAN!!!!"

Lots of love

Heady

[Doglinton in reply to Heady]

Oh, Heady. I see my future !! Thought present was bad enough. You're right, it is continually adjusting to new unacceptable !!!

Hope you manage some relaxed calm before the storm !!

Love and hugs, Jean x

[Mnd0vrmnky]

Sorry you've been having a hard time mate. I just had colostrum delivered and it may be what you're looking for. It's not that cheap though. It's taken from cows the first few hours after they give birth. Its filled with all sorts of goodness and is supposed to help heal/treat gi tract problems. It smells like an ingredient of milky bar chocolate.

I have immune tree colostrum 6 and have yet to give any to pops cos they've been on a cruise the last 12days. I'm about to have some in a cup of coffee though. They are saying it heals any gut leakage so I wish this was one of the first things I'd given him. One theory is bacteria leaks from the gut into the spinal fluid right?

raysahelian.com/colostrum.html

Peace

[NanBabs]

Sending you hugs, Heady. Just when you think you`ve done it all and things have settled down .... that`s when it all goes wrong.

Chin up.

xx

[Debbieann]

Sending you hugs, so sorry you had such a bad weekend! Hope all is well with you and S now, I think Katie and Jean have said it all, nobody other than the lovely people here really tell you the truth about what the future with this disease holds

Lots of love

Debbie xx

[Heady in reply to Debbieann]

Thanks Debbie, S home now, just! Nearly told him exactly what I thought, when I was trying to dress him in the hospital and he started hitting and kicking me! I know I have said this before, but I must have been a VERY bad girl, in my previous life. Never knew until today, exactly how bad. Oh boy, am I being punished!!! I am only trying to help, you would think I was stuffing a pillow over his face. Hey ho, another wonderful day with PSP!

Lots of love

Heady

[Doglinton in reply to Heady]

I feel sorry for you having him being resistant. I feel angry enough about it all and C is really appreciative and co-operative. When he just does things I find it hard to really believe he can't help his behaviour, so I don't know how I would cope with your problems.

Sometimes saying its just PSP doesn't really work, does it ?

lots of love, Jean x

[Heady in reply to Doglinton]

NO!!!!!!!!!!!!!!!!!!!!!!!

Lots of love

Heady

[Yvonneandgeorge]

Oh heady hope you have a good night, thinking about you, this bloody illness is so hard to deal with. George has had another urine infection, been a stressful few days, he keeps saying he is not comfortable, he bottom is so tiny, I think he is suffering, with sitting on it so much, feeling helpless, he keeps saying he is going to die soon, he says he is not well. Feel so sad when I look at him, he looks so tiny and fragile. He has been coughing a lot, and chocking, he tries to eat his dinner so quick. Good night all I hope you all get a decent night sleep 🌹🌹🌹🌹🌹🌹🌹xxxxxxx

[cabbagecottage in reply to Yvonneandgeorge]

Have you got air mattress or air cushion.  We have the mattress and it s big help . Still waiting for the chair cushion . 

He complained so much about the discomfort in his buttocks I removed a topper which was on the single bed we have and cut a piece out to fit his chair .  

Goes on the seat and up the back in one piece. He hasn't complained since .