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The UKFibromyalgia Forums • View topic - Lucy - sunday 30th



Lucy - sunday 30th

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Lucy - sunday 30th

Postby princess » Sun Aug 30, 2009 5:55 pm

Dear Fiona

We are home! Thank you for forwarding all the e-mails. Although Lucy is home, she isn't well enough to go on her computer, so I shall carry on printing off the e-mails.

The paediatrician decided that as the gastroentorologist is away on holiday, and he is the only consultant with paediatric training, that we should come home until his return. I had a crash course in the use of feeding tubes, using the feed, flushing the tube out, giving her the medication she is currently on through the tube etc. I don't know who was more frightened about being left in charge of Lucy's nasal tube - Lucy or me!!!!! Just as well she trusts me.

Lucy was brought home from the hospital by ambulance as she is still too weak to make it back through our front door. We didn't get home till 5 o'clock and her feed had to be started immediately. They sent us home with all the equipment we needed, but they are not allowed to send a stand home, so I had to rig one up made of a broom handle, a garden umbrella base and a bent coat hanger over the curtain pole. Crazy. Vicky and I then had to dismantle my bed and move Lucy's electric bed into my bedroom as her wheelchair doesn't fit through the door into her bedroom. We then had to move this makeshift stand, the feed and Lucy upstairs. She was exhausted poor kid - and frightened because though she is stronger, she's a poorly little girl.

The laugh of all this is the way the system works. Originally the hospital wanted Lucy to come home during the day, but return to the hospital each night. I said that was impossible, she couldn't cope with that because we can't get her in and out of the house and they couldn't keep sending an ambulance to ferry her. So we have left the hospital under the care of the Paediatric Community Nurses. We didn't get home until 5 o'clock so it was too late for them to visit Lucy unless it was an emergency. But this is what makes me laugh, they are not visiting now until Tuesday because it is a bank holiday weekend - no one has any idea whether I am feeding Lucy correctly, using the equipment correctly, giving her the right medication nor whether the child is alive or dead!

Anyway, that's my moan over. We are coping quite well and I feel more confident with the use of the tube. The dog was thrilled to have Lucy home. We have no answers yet, but lets home they will come up with a solution for this over the next month. In Lucy's hospital notes there is a photocopy of part of a medical book about Ehlers Danlos and they have highlighted a section on this page which says that people with this syndrome often have swallowing problems. That could be why they were so quick to want to put a peg directly into Lucy's stomach. If that is the answer, then we'll deal with it, but I would like to rule out anything else first.

What a beautiful cat you have. Lucy is resting at the moment, but when I next go up to her, I'll take a copy of her.

I hope you are in reasonably good health at the moment. Please thank everyone from Lucy and me for their messages.

Love,

Kate xxx



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Re: Lucy - sunday 30th

Postby miajane » Sun Aug 30, 2009 7:40 pm

Thanks for posting princess,
At least she is home for now, but I'd thought they would have more support.
My heart goes out to Kate, Lucy and the rest of her family, wishing them all the best and hoping that they are able to get some answers soon. :hugs:
Mia xx
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Re: Lucy - sunday 30th

Postby princess » Sun Aug 30, 2009 7:52 pm

AS you can see Lucy suffers from Ehlers Danlos syndrome - thats a type of Connective Tissue disorder, lets hope she can get some help soon. She is in great pain and they cant seem to get any medicaton to ease her pain, so fingers and toes crossed they can get things going forward and help both her and Kate.
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Re: Lucy - sunday 30th

Postby shazq » Sun Aug 30, 2009 8:06 pm

Thanks for mailing the letter to me princess. :hugs:

I have been thinking about lucy and her family.

I hope everything runs smoothly over the weekend.

I bet Lucy is glad to be in her own bed at home with her family all around her, hope this picks her up a bit.

sending you all my love. :grouphug:
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Re: Lucy - sunday 30th

Postby smiler22 » Sun Aug 30, 2009 8:34 pm

glad to here lucy is at home for now. it must be a godsend for her to be back in a familar settings. with her beloved family. take it easy lucy and im sure your mum and family will continue with their love and care for you. lucys mum sorry for a moment i have forgoteen your name. i know doing peg feed etc can be daunting as i had to do them daily for many of our residents i looked after as a senior carer. there was many different types and lots of different conditions that our patients had. from swallowing difficulties to storkes to comatose etc....... i know it will be something hard to get used to doing but believe in yourself im sure you are doing it correctly. its one of those things that when you are showed how to do it you take it in so quickly as you know it is a procedure that is important so i feel our brains take notice of it more than other things....just a wonder if the broom thingy doesnt work have you got a hat stand. or a wal plant hanger that you can fix the bag to underneath.
live life to the full as life is what you make itxx
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Re: Lucy - sunday 30th

Postby Mr.A » Tue Sep 01, 2009 5:58 am

Again, my best wishes to Lucy and her mum.
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