My poor Stacy is still in Watford General Hospital and it's now 3 and a half weeks! If you remember it started with a Crohn's attack and a chest infection almost 4 weeks ago.
Larry and I have been ill since last Tuesday so that was the last time we saw her until today. We have spoken to her every day.
We still aren't well but she was really fed up and I could tell, because she texted me yesterday not to phone so I got really upset and didn't sleep at all last night. I tried everything to get to sleep but it just wasn't happening. I texted Stacy but no answer. Finally I phoned around 10ish and she sounded absolutely awful.
What did I do? I thought sod it just go there and spend 5 minutes with her but don't get close. Also to take up my Kindle because her one has stopped working even though it's only a year old, if that.
So we both got dressed and Larry took me because he hates the way I take off and put on the wheelchair from the car and the new hoist is so slow it's like a turtle and I'm not very good at it to be honest, but I'm only telling you guys. Larry NEVER reads FB he thinks it's terrible and he never reads my blogs either, so I'm safe so long as YOU don't tell him.
I went in and Stacy was hooked up to two new drips and was totally out of it. She is also nil by mouth which further concerned me as it means she isn't taking any of her medication.
I asked the nurse what was going on and if the Crohns team had been to see Stacy, because Stacy told me they were coming. The nurse looked at me like 'and who do you think you are?' So I said to the nice nurse 'I'm her mother'. The nurse stepped back and apologised and said 'Sorry, I thought you were her sister.' I can take that. Don't know how Stacy would feel about it. Does that mean she looks really old or I look really young. I'll go for the second option, but really don't think I do.
The nurse told me that the surgeon and his team were coming tomorrow to discuss what to do as Stacy was still in a lot of pain. I really didn't take that well at all. I told her that under no circumstances could they possibly operate because she has, apart from everything else, PVOD. The Nurse had absolutely no idea what this was. Surprise Surprise! I explained the basic ins and outs of it but am still not sure she understood me. She gave me the phone number of the ward so I, Larry, could phone in the morning and let the day staff know exactly what is wrong with her and to warn the Surgeons that if they operate they will kill her.
Stacy was sleeping this whole time except for when I tried to wake her up by gently shaking her leg and she opened her eyes and I left her an Apple plug and my Kindle, which I can manage without because I have other ways of reading - like my phone which is fine to read on. But I'm not sure she will remember I was there.
When Stacy is awake she really is fed up with being in hospital and I certainly don't blame her. She isn't well and has spent most of the last 5 months in one hospital or another. It really sucks!!! And I really feel for her.
The whole thing is truly heartbreaking. I so want her to be able to go on an unforgettable holiday and I so hope she gets better soon to be able to go. The pledges have stopped because my goal was reached, but I didn't think they would and I hate being greedy but as my son said I should have checked how much everything was going to cost before I put a sum up. I just thought of a number and away we went, regardless if the amount is enough or not.
Please get better soon my Stacy because we love and miss you, and if you were well we would be seeing you all the time but we don't want you to get sicker by catching whatever we have.
All my Love Forever
Friday, 4 December 2015
|This photo was taken 2 years ago when|
Stacy was better than she currently is.
Please help if you possibly can. Our younger Daughter, Stacy, has been ill for most of her life with Crohn's Disease which is debilitating to say the least.
However about 12 weeks ago Stacy was diagnosed with PVOD which stands for Pulminary Veno-Occlusive Disease. This disease is so rare it is rare even in the realm of rare diseases, and always terminal with a median time of 2 years from diagnosis. However Watford General Hospital knew she had Pulminary Hypertension last June, so we have no idea how long she has had this for. This disease is so rare that only 1 in 10,000,000 - yes you've read this right it's one in ten million people have this.
This has been really awful for all of us, but especially for Stacy, and all she wants is one last holiday with her family, but we don't have the resources to give this to her as we are both just Pensioners on the State Pension.
One night when I couldn't sleep I suddenly thought of Crowd Funding by Just Giving so I have made a page for her where you can donate anything from £10.00. Every single donation will be so gratefully received. Here is the link to our page.
Thank you so much for even reading this and we are really grateful for everything donated.
American by birth and MOUTH
but British in every other way