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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.

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Marina · 19/01/2006 18:44

willow, I am sorry. I should think the Cromwell is a far nicer place to be than most, but I wonder whether some Jo Malone cologne to spritz her pillow or curtains, or touch on her pulse points, might lift both your spirits just a little.
Not much of a comparison really but when I was bedbound and really quite poorly after an elective a couple of years ago, the Occitane Lavender water that some Mn pals gave me always managed to make me feel a bit brighter.
Hoping for a reasonable night for you both and better news tomorrow.

willow2 · 19/01/2006 18:51

Marina, they wouldn't allow anything like that in the ICU - ok if you are in your room/ward, but not there where everything is so clinical (and critical). Mum is lying there, out for the count, with numerous lines and pipes coming in and out of her - it's like spaghetti junction - so would be terrified of spritzing anything that might get on/in to the tubes. We have to use alcohol wash on our hands when we come in and when we leave - it's hardcore.

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willow2 · 19/01/2006 18:51

Couldn't put anything on her pulse points either - too many holes...

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SorenLorensen · 19/01/2006 19:07

willow, I've only just seen this. I'm so sorry. It's so hard to know what to say (if anything) when you visit someone really poorly in hospital. I used to sit there when my Mum was in for a long time and not know what to say, and she had nothing to say either because she'd been in hospital for weeks. We're never lost for words with each other but visiting someone in hospital is always strained and awkward.
You must be utterly exhausted - physically and emotionally.
My thought are with you - and I hope she shows some improvement soon.
(It's marthamoo, btw)

Flossam · 19/01/2006 19:07

Willow, on our unit we use lavender scented oil heater machines to help aid sleep and err, cover any odours. I'm sure if you asked the nursing staff would be more than happy to spritz her bedlinen with some kind of essential oils. Most of us like all that sort of stuff, and no-one knows about how strong our sense of smell is when we are unconcious.

willow2 · 19/01/2006 19:08

Flossam - I'll ask them tomorrow. Ta v much.

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willow2 · 19/01/2006 19:09

marthamoo - great new name by the way

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Flossam · 19/01/2006 19:10

BTW, should make clear, I doubt they will have the oils, you would need to take that in themselves. Also take some hand cream and massage her hands and feet, some evidence this is soothing and also will save you feeling you are just 'sat' there. Again if you are uncertain, talk to the nurses. They are there to support you too.

bundy · 19/01/2006 19:10

or you could take in fresly laundered muslin squares, with a little of something nice sprayed on.

Flossam · 19/01/2006 19:10

themselves/ yourselves.

Callmemadam · 19/01/2006 20:26

Willow, I am so sorry to hear this. I had to sit in the London Bridge ICU for 3 weeks with my mum, and at the end went down with flu and was ill for weeks myself. So what I am trying to say is be there for your mum, but for God's sake look after yourself with rest and good food because otherwise you will be ill yourself. The ICU nurses told my dh that my bad 'flu was not unusual in relatives. Look after yourself as well: I'm sure she would want you to. Thinking of you, though.

Marina · 20/01/2006 10:31

Oh willow, that is grim. I hope Flossam's and bundle's suggestions might be looked upon kindly by the staff in the ICU. Thinking of you both.

willow2 · 21/01/2006 13:23

She's still sedated etc etc have decided against smelly stuff - they don't want her to cough so think anything that might irritate her lungs/make her sneeze is probably best avoided for now. They are going to try slowly bringing her round over the next few days and decreasing her ventilation - will let you know how she gets on.

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Marina · 21/01/2006 19:21

They say hearing is the sense least affected by very serious illness willow - if lovely aromas are off-limits for now, is there a way you can share music with her, or the spoken word (am thinking of anything read by Anton Lesser, whose voice is like light honey).
Thinking of you - give us an update when you can.

willow2 · 25/01/2006 16:59

Just to say that things are on the up - they stopped sedating mum at the weekend. She wasn't really with it until today, but when I went in this morning she was the best she'd looked in weeks. That's not to say that everything is hunky dory - she's still critical and in ITC, but everyone seems to have dropped down one stage from the "PANIC" level of a week ago. She knew what I was saying and managed to communicate a few things that she needed - more my inability to lip read than her inability to mouth words - so just keeping fingers crossed that she stays clear of further infection and things continue to improve. Providing there is no change, tomorrow her lovely nurse is going to give her a pamper day - from what I can gather that basically means that she'll get her hair washed for the first time this year!

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bluesky · 25/01/2006 17:44

Glad things are on the up Willow2. Hope you are looking after yourself too. x

bundy · 25/01/2006 17:48

oh willow that's lovely news!

FrumpyGrumpy · 25/01/2006 19:38

Willow, have been thinking about you and yours. I'm so glad to hear this. I'm sure you'll still have good days/bad days but this is the first step and it really makes you feel alive to see a chink of light. Glad for you.

winnie · 25/01/2006 19:48

good news Willow, I hope things continue to improve.

willow2 · 25/01/2006 20:05

Knew I'd spoken too soon - seems she now might have shingles as well... God almighty, as if she didn't have enough to contend with. They've started her on medication but are waiting for lab tests to confirm. Might, just might, be a reaction to one of the other med's though.

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FrumpyGrumpy · 25/01/2006 20:15

Its always one forward and one back isn't it. Sorry to hear that, fingers crossed.

AlmostAnAngel · 25/01/2006 20:19

[hugs]and angel dust** hope shes much better soon,and also agree with look after yourself ,i know its hard but just be gentle on yourself

Earlybird · 25/01/2006 20:43

Don't know how I missed this. I'm so sorry, and know this is impossibly hard for everyone.

Who's looking after your ds while you sit in the hospital? Hope you've got good support in place - though even the best support isn't enough in times like these when you long for things to be "normal" again.

WideWebWitch · 29/01/2006 21:23

willow2, just thought of you and wondered how you are. I hope your mum is continuing to improve. x

willow2 · 02/02/2006 19:30

Well, so far so good. She has been making constant progress - still in ICU on ventilator but doing more of the breathing herself. Having lots of physio, getting absolutely knackered by it (she's just wasted away and can't even stand up unassisted) but spirits ok at moment. She is communicating by writing and her words are very much "her" - if that makes sense. Feel we are no longer at panic station level, but still a long way to go and have been warned to expect set backs along the way. Fingers crossed and all that.

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