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My mum is critically ill...

93 replies

willow2 · 15/01/2006 18:57

Excuse the rambling post, but my head feels as though it is about to implode.

We were away over Christmas and NY (Oman, staying with friends, unreal holiday). Spoke to my mum on New Year's Day - she had a bad cold but was otherwise ok. The next day we went camping in the desert, so were completely uncontactable until the 4th. As we drove back I turned my phone on to find various rambling messages about my mum. Finally, I managed to get through to my brother and found that my mum was now in intensive care. Fortunately, we were flying home that night anyway - so I went straight from Heathrow to the hospital. And I've been there every day since. Mum was heavily sedated and on a ventilator - she'd burst her lung through coughing and the other lung had collapsed - but still in a terribly distressed state. Spent the first two days trying to stop her pulling her ventilator out. Then they operated on her lung to seal the holes. She made it through the operation but the surgeon found her lungs were in a terrible condition - turns out her "asthma" is really emphysema, but then that's probably not something you admit to your family when you are a heavy smoker who has tried everything, including Zyban, to give up but, actually, don't really want to stop. Plus she had double pneumonia. Plus she had another infection.

For about five days she was out cold - heavily sedated, ventilated and, at one point, on dialysis because her kidneys failed too. (They seem to be working again, but who knows what's around the corner.)

Now, nearly two weeks after being taken ill, she is still in intensive care, still on a ventilator, still not free of pneumonia or the other infection and still in a terrible state. She is now conscious - well, kind of. She's very confused and, I imagine, absolutely terrified. I know I am.

Yesterday, because she'd had been intubated for so long and was having such a dreadful time coping with the tube going through her mouth, they did a tracheotomy - so now she has a sodding tube going into her neck to make sure she can breathe. Supposedly, it's temporary. I bloody hope so - apart from anything else, she's not the sort of woman to enjoy doing Darth Vader impersonations. Not that she can even do that yet, she still doesn't even have the strength to breathe, let alone speak - and that's getting to her too, understandably. To be honest, she was in a foul mood today - annoyed that we couldn't understand what she was trying to say (she can't write anything yet - she's too weak plus she has such dreadful odoema that she can't really hold a pen as her hands are too puffed up) annoyed that I wouldn't let her guzzle down glasses of water (because if she drinks too much, too quickly, she'll be sick. Not a good idea when there's half a yard of garden hose down your throat.)

I understand that this is all part of the "healing" process - if she wasn't getting upset and depressed it would be more worrying - but it is so hard to see her going through all this. I know that she is making small improvements in the right direction - but she is still so terribly ill that I can't relax for a second or take any strength from these tiny steps. Everything happened so fast two weeks ago and I'm just petrified that she'll get another infection or something. (Die, I suppose.) She's only 64 - and she's a massive part of my life. We are best mates and I'm terrified for her (and for me) that if she does make it through all this that she will be a pale shadow of the person she used to be - hooked up to a bloody oxygen tank or worse.

I'm spending all "school hours" at the hospital. I'm not alone - my lovely step-father is there as are my aunt and uncle. Plus my brother, sisters and step-sister are in and out too. We kind of have this shift system going where we take it in turns to sit with her. But I daren't voice my worries to them, least of all my step-father who would be lost without my mum. So I'm going to put them here - if that's ok with you lot.

OP posts:
hunkermunker · 02/02/2006 19:31

Oh, heart in mouth when I saw you'd posted on this thread again - so glad to hear that she's stable and "herself" x x x

willow2 · 16/02/2006 13:45

Day 46 in the Cromwell Hospital household...

all tubes etc are out and she is getting out of intensive care today. She can talk, can now walk about ten yards (using a frame) and is in good spirits - as are we. Hopefully, she'll be back home by end of March. Fingers still crossed, but not as tightly. x

OP posts:
Marina · 16/02/2006 13:51

My turn to have heart in mouth Hunker.
Willow, that is good news Hope all proceeds smoothly towards the end of March.

FrumpyGrumpy · 16/02/2006 14:10

Willow2 thats such great news. I've been wondering how its been going. I'm so pleased for you all.

blueteddy · 16/02/2006 14:19

Excellent news, willow2.

willow2 · 17/02/2006 16:15

We had our first phone conversation today since Jan 1st

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Aero · 17/02/2006 16:24

Lovely to read that willow.

WideWebWitch · 17/02/2006 16:27

Oh I'm so pleased willow.

Earlybird · 17/02/2006 21:50

It must be a huge relief to see tangible progress after such an endurance testing ordeal. Glad to know that things are so much more positive.

willow2 · 31/03/2006 21:40

Just wanted to say that my mum has been home a week or so now. No tubes. No medication. F'ing miracle. Still very frail though, but slowly getting stronger and more able.

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jura · 01/04/2006 00:38

This reply has been deleted

Message withdrawn at poster's request.

ToujoursMarine · 05/04/2006 09:22

Duh, just totally hijacked a thread about Louise Wener to try and find this out, and then it occurred to me to do a search.
Really pleased she has made such a great recovery willow :)

willow2 · 21/06/2006 21:03

As most of you know, my mum has made a pretty remarkable recovery. She's ended up back in hospital twice with infections that needed watching over, but she's home again now and has even been away on holiday.

That said, her system is fucked. She's very prone to infection but also now appears to be allergic to most antibiotics - something she never was before this happened. Plus, and I know this is what distresses her the most, she still has an incredibly sore mouth and her tastebuds are completely out of kilter. So it hurts to eat and food tastes horrible. She has been to see numerous people about this - including the country's leading expert in oral "trauma". There is no obvious reason for the problem - no infection or visible signs of damage. In fact, the only thing that people can come up with is that she was orally ventilated for a considerable amount of time, some of which she was conscious for. (From what I can gather, most patients are unconscious when ventilated and, if not, end up with a trachaeotomy a lot faster than my mother did.) So one possible cause is that, as ventilation is so horrific (imagine having a rather large garden hose down your throat for a few weeks and being so thirsty you would kill for a glass of water) her brain might have literally "switched off" the messages from her mouth as a way of coping.
Anyway, the reason for this long post is has anyone ever heard of this happening - or, as traditional medicine seems to have drawn a blank, have any suggestions as to what complementary therapies might help turn things around?

OP posts:
willow2 · 22/06/2006 09:44

bump

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ScummyMummy · 23/06/2006 13:27

I don't know, willow. Sounds like a hard one. I expect it'd be very important not to push her and to give her lots of time. Could some kind of counselling help perhaps? Maybe CBT?

Or what about stuff that is sensual in other ways? Maybe massage or aromatherapy would be good- eating is partly about touch and smell after all so maybe doing something pleasurable along those lines would help "rewire" her brain. Even if it didn't your mum might find them pleasurable for their own sake?

Hope things improve with time. She's been through such a lot, your mum and you've clearly been a rock through it.

willow2 · 24/06/2006 10:15

Ta Scummy - anyone else? What about you dentists out there? Has anyone heard of this???

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milge · 24/06/2006 10:23

cranial osteopaths have really helped my SN dd - they seem to be very good at dealing with things that conventional medicine has failed at - its a bit like laying on of hands but could be worth a go. Their website is here

Saggarmakersbottomknocker · 24/06/2006 10:33

Your poor mum - she must be so fed up Enjoying food is such an important thing for us.

My dd was on a vent for quite some time as a 5 month old - then went on to have an ng tube for over a year. She suffered a degree of 'oral aversion' which I believe was related to both these things.

I can't really help with a resolution I'm afraid, for us it just took a lot of patience - allowing her to have as much control of what went in her mouth as possible. She still does have extreme reactions to certain textures and tastes and has a gag reflex to be proud of.

I hope it starts to settle for your mum very soon. Is she managing to eat enough to stay healthy and keep up her healing?

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