I know it's been more than a couple of weeks since I last shared but Stacy has not been doing well. She has had migraine after migraine and hasn't really felt at all well.
It finally dawned on me today that, against what she has said, she has gained weight and I remembered, finally, that she wasn't meant to gain more than 1lb and she was supposed to weigh herself daily. I so bet she hasn't even though I have given her my brand new scales.
I feel like I'm fighting a losing battle with her determination to do what she wants despite the facts of this illness. I have made her promise to call the doctors at Hammersmith Hospital first thing Monday morning and no excuses tolerated. She is a woman and not a kid and I shouldn't have to phone up for her but if I have to I so will.
That's all really. No much else to say for now and no photos that's for sure.
I hope she starts listening to somebody soon or .....
Love
Pxxx
Saturday, 6 February 2016
Thursday, 21 January 2016
The Latest on Stacy ...
Stacy was in Watford General again, but you know this from my last posts. In their infinite wisdom they moved her from the ward she was on, in the main hospital, to this other word in what was Shrodells Hospital which was built as a workhouse in the 1800s and changed into an Insane Asylum in the 1960's. A couple of people have said it was a maternity ward but I only heard about it as what it was, but I could be wrong as I so often am.
I have to tell you it was the worst and dirtiest place I have ever seen in my whole life. She was put there for at least two weeks and was discharged from there a couple of weeks ago, only to be readmitted to AAU two days later with a blood infection she had picked up in Shrodells in which her legs really hurt her. She was put in isolation for a week and finally got out last Friday.
So she's home again now. Thank g-d for that and small mercies. They weren't allowed to let her out until some kind of care package was in place. So that's in place and now she is back in her little flat I'm delighted to say.
She has an appointment with her new Crohn's specialist at the beginning of February and we are going to go with her and see if there is some way when she is taken into Watford General they will transfer her to St. Mary's Hospital in Praed Street which is where Professor Orchard is based. Yes it it a much longer journey there but we feel that she will be so much better off there.
I have tried, without success, to get a no win no fee firm of solicitors to sue Watford General for all the crap that has happened to Stacy over the years but was told by two firms this week that there is nothing they can do. So, that's the end of that. No suing. No nothing. Surely they owed her a duty of care. But apparently that isn't enough and too much damage has been caused over the years. I would have loved to have sued that hip surgeon who left her hipless for 9 months and the Crohn's doctor who everybody raves about but it's not to be and I have enough stress without any more.
At least last night and the night before I slept all night despite having long naps in the afternoon. Guess I can blame the MS for this. But I'm sleeping again which is a plus and getting up at a really reasonable time - like 7:30 or 8:00!!! Yay me!!
Well that's all the news on Stacy for now. But at least it's way better than it was even a week or two ago I'm delighted to say, though nothing has really changed other than she is out of hospital but everything is the same insofar as her diagnosis is concerned though I really don't want to believe it.
Hugs
Patricia xxx
I have to tell you it was the worst and dirtiest place I have ever seen in my whole life. She was put there for at least two weeks and was discharged from there a couple of weeks ago, only to be readmitted to AAU two days later with a blood infection she had picked up in Shrodells in which her legs really hurt her. She was put in isolation for a week and finally got out last Friday.
So she's home again now. Thank g-d for that and small mercies. They weren't allowed to let her out until some kind of care package was in place. So that's in place and now she is back in her little flat I'm delighted to say.
She has an appointment with her new Crohn's specialist at the beginning of February and we are going to go with her and see if there is some way when she is taken into Watford General they will transfer her to St. Mary's Hospital in Praed Street which is where Professor Orchard is based. Yes it it a much longer journey there but we feel that she will be so much better off there.
I have tried, without success, to get a no win no fee firm of solicitors to sue Watford General for all the crap that has happened to Stacy over the years but was told by two firms this week that there is nothing they can do. So, that's the end of that. No suing. No nothing. Surely they owed her a duty of care. But apparently that isn't enough and too much damage has been caused over the years. I would have loved to have sued that hip surgeon who left her hipless for 9 months and the Crohn's doctor who everybody raves about but it's not to be and I have enough stress without any more.
At least last night and the night before I slept all night despite having long naps in the afternoon. Guess I can blame the MS for this. But I'm sleeping again which is a plus and getting up at a really reasonable time - like 7:30 or 8:00!!! Yay me!!
Well that's all the news on Stacy for now. But at least it's way better than it was even a week or two ago I'm delighted to say, though nothing has really changed other than she is out of hospital but everything is the same insofar as her diagnosis is concerned though I really don't want to believe it.
Hugs
Patricia xxx
Tuesday, 12 January 2016
I know it's been a while but ...
.... Stuff sucks!!!
Stacy was diagnosed with Crohn's Disease in her small bowel over 20 years ago. Because of the ineptitude of both Watford General Hospital and some of the doctors and a surgeon there she has so much more wrong with her it is untrue. Every time she was admitted whether it was a Crohn's attack or a viral infection she was immediately put on intravenous steroids. They just did it ad lib and never told any of us what the downside of this wonder drug could do.
Stacy was diagnosed with Crohn's Disease in her small bowel over 20 years ago. Because of the ineptitude of both Watford General Hospital and some of the doctors and a surgeon there she has so much more wrong with her it is untrue. Every time she was admitted whether it was a Crohn's attack or a viral infection she was immediately put on intravenous steroids. They just did it ad lib and never told any of us what the downside of this wonder drug could do.
Pat,
That is horrible! I am glad you are suing. We are suing too, for the birth injury. We are suing the hospital that we went to for non-stress test to make sure baby was ok. I hope that by taking a suit it will at least create change, even if we don't win. I bet you hope for the same.
So sorry your dear one has to suffer so. With Eleni I also wonder about if it would have been better for her not to live this life of suffering. I feel it has never been my choice, but it will be our choice someday, perhaps, if we choose to let her go when all hope is truly lost. Sigh. I do pray that God would take my girl quickly and without fear for her when the time comes. The other night when she almost died, she looked so afraid. It was traumatic for both of us. I hope for an easy passing for yours when the time is right. Please don't be offended. Sorry if I speak inappropriately.
Best,
On Tuesday, January 12, 2016 8:08 PM, Patricia Lessell <patreeshal@gmail.com> wrote:
Rachel
I am so sorry. I had no idea that Eleni won't live for many years. Do you know what caused it? Is there any way of this not happening? I know from what you've written that you are doing everything possible that you can for her. I just feel so bad for you and your family. It's so very hard. The only thing I can tell you is I had a step-sister who had a son and he was born with something wrong with him. Jackie (step-sister) said that had she known he was going to die she would never have put him through the pain of all the operations he had.
Stacy came out of hospital for 2 1/2 days last week. She had been in there one day short of 8 weeks. They transferred her from the main hospital to a very old wing that had been built in the 1800's as a workhouse and was converted in the 1960's as an Insane Asylum a couple of weeks ago. To say it was bad in there is putting it so mildly it's untrue.
It appears that she caught an infection in there and was admitted again on Saturday with terrible pains in her legs. They say that they don't know what has caused this but have taken loads of blood samples. She could only have caught the infection in there because she wasn't out long enough to have caught it anywhere else.
I was so angry that I called up a legal firm yesterday that does no win no fee. There have been a complete catalog of screw ups by the local hospital and doctors from that hospital, that have caused so many other illnesses that were totally preventable and she should never have got.
The person to whom I spoke yesterday at this law firm said someone would call me back in a couple of days. They called back today and they said they will take her case on. It is very hard to win anything against doctors in this country. A lawyer is calling me next Wto discuss it all.
Sunday, 13 December 2015
Nil by Mouth
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
Mum xxxxxx
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
Mum xxxxxx
Tuesday, 8 December 2015
Stacy is still in Watford General
What more can I say? It will be three weeks on Thursday minus the day she was sent home. She is fed up being in there and I've run out of things to tell her or say to her - boring old fart I am.
The only thing I have to tell you is that her father, also known as my husband, is ill too. So I guess we won't be going there tomorrow.
I have started up a Bucket List on my Pinterest Board which I am totally addicted to and I have on there all kinds of stuff like cooking and cross stitch and quilting and baking and now Stacy's Bucket List which only has one thing on it and that is a cruise liner.
Stupid me when I started the CrowdFunding page I never even thought of how much the insurance would be for her with everything that is wrong with her.
When we went away last year there was not so much wrong with her. Certainly she had Crohns, and Avascular Necrosis (that's where there is no blood getting to her hips so she needs new ones), Insulin dependent Diabetes and Fibromyalgia (have to buy those Gingerbread Thins from M&S - I was in there today and bought her fruit but forgot the Gingerbread Thins) which were the main things wrong with her then but this Pulminary Hypertension thing (PVOD) is a whole new ballgame because it is terminal. But it has to be declared along with everything else.
I never include Larry & my illnesses because let's face it neither is life threatening and if he has a hypo because of his diabetes it's no big deal he just takes these tablets that taste like that horrible sweet drink that I can't spell but it looks a sort of orangey yellow colour and is vile - but he likes it. With my MS nothing is going to happen and if it does so be it I treat it with the contempt it deserves.
So that's all for today and I guess we won't be seeing Stacy or the children tomorrow either. Saw all of them on Sunday and oh yes I'm going to collect Lily (12) from school tomorrow because she is practicing for her play after school. But I can't look after the two little ones on my own, wish I could.
The only thing I have to tell you is that her father, also known as my husband, is ill too. So I guess we won't be going there tomorrow.
I have started up a Bucket List on my Pinterest Board which I am totally addicted to and I have on there all kinds of stuff like cooking and cross stitch and quilting and baking and now Stacy's Bucket List which only has one thing on it and that is a cruise liner.
Stupid me when I started the CrowdFunding page I never even thought of how much the insurance would be for her with everything that is wrong with her.
When we went away last year there was not so much wrong with her. Certainly she had Crohns, and Avascular Necrosis (that's where there is no blood getting to her hips so she needs new ones), Insulin dependent Diabetes and Fibromyalgia (have to buy those Gingerbread Thins from M&S - I was in there today and bought her fruit but forgot the Gingerbread Thins) which were the main things wrong with her then but this Pulminary Hypertension thing (PVOD) is a whole new ballgame because it is terminal. But it has to be declared along with everything else.
I never include Larry & my illnesses because let's face it neither is life threatening and if he has a hypo because of his diabetes it's no big deal he just takes these tablets that taste like that horrible sweet drink that I can't spell but it looks a sort of orangey yellow colour and is vile - but he likes it. With my MS nothing is going to happen and if it does so be it I treat it with the contempt it deserves.
So that's all for today and I guess we won't be seeing Stacy or the children tomorrow either. Saw all of them on Sunday and oh yes I'm going to collect Lily (12) from school tomorrow because she is practicing for her play after school. But I can't look after the two little ones on my own, wish I could.
Thursday, 3 December 2015
Stacy is in Watford General AGAIN
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| Watford General Hospital is a 521-bed acute District General Hospital in Watford, Hertfordshire, operated by West Hertfordshire Hospitals NHS Trust along with Hemel Hempstead General Hospital in Hemel ... Wikipedia |
Stacy was released from hospital Tuesday afternoon. Yesterday afternoon Larry (her dad and my DH) went and picked up the medicines they didn't have ready yesterday from Watford General Hospital. No big deal honestly because she has so much medication it is totally untrue.
Then when he got home we got a call from the the Warden Assisted block of flats that she lives in to say Stacy wasn't responding again - all I can say is thank g-d for Beverley who is one of the Wardens there and is amazing.
We raced up there, thankfully it's only around a mile away from where we live, and she was sleeping on the couch and hadn't eaten anything nor taken any of her medication. She wasn't very responsive and when she was she was yelling to leave her alone. Stacy never yells and this just wasn't her.
It's now 22:11 (yesterday) and we haven't been home long, because I phoned up the doctors to get somebody to come out and see her and luckily enough for me the girl that answered the phone was a friend of mine. Instead of of sending out a doctor Lindsey had my favourite doctor call me.
Dr. Jo called and told me that the hospital had phoned the practice this morning and another doctor (who shall remain nameless but is very lovely) answered the call from the hospital who said that they wanted Stacy to have another blood test either today or tomorrow. Well did she let rip - I wouldn't have liked to have been on the other end of that phone. She wanted to know why they had discharged her without telling her and why they had discharged her after only being well for one day.
Dr. Jo said to leave it to her. She phoned up the hospital and told them in no uncertain terms that they had no right discharging her without a proper care package being in place firstly and secondly how could they discharge somebody so ill who had only been okay for one day after being in there for just under two weeks (one day under two weeks).
We followed the ambulance and stayed with Stacy from around 3 this afternoon until we left at around 8:15 this evening because Stacy had been sleeping for a while by then and Dr. Jo had made arrangements for Stacy to go back to AAU (Acute Admissions Unit).
Do you know I think I hate the NHS right now. They owe my daughter a duty of care and all they are worried about it is the shortage of beds they have and getting the people out of them as fast as possible. Well, if they hadn't closed down so many hospitals in Hertfordshire, they wouldn't be in the trouble they are in now. Watford General Hospital is the only hospital for miles and miles and it isn't big enough or have enough staff and no wonder it is under Special Measures which means, I think, they aren't doing their jobs properly. How can they be expected to.
Okay it isn't the NHS I hate it's Hertfordshire County Council for closing hospitals left right and centre, closing schools and building houses on the land - not them but developers.
According to Hertsmere's Statistics there are over 100,000 people living in some of the areas the WFG covers and they have 521 beds!!!!
The caption above, under the small photo of WFG, via Wikipedia says that Hemel Hempstead hospital is a General Hospital but it isn't anymore. They have closed down the A&E so anyone that goes to A&E at WFG and needs hospitalization goes into one of the 521 beds at Watford.
There is a CrowdFunding page here https://crowdfunding.justgiving.com/patricia-lessell
because all Stacy wants is a holiday with us. Watford General says she can't fly but Hammersmith Hospital says she can. So who knows.
Love Pxxx
Wednesday, 2 December 2015
The past two weeks
Stacy lives in a Warden Assisted block of flats, or apartments as they now call them in England. The Brits are taking all our terms now and just using them. And so says this Yank!
Almost two weeks ago one of the Wardens at the flats where Stacy is in Bushey Heath, Beverley, was passing Stacy's flat (look I live in England where they have always been called Flats) when she heard noises and rang the bell but there was no answer, so she used her key to gain entry. Stacy was sort of in her bed talking absolute gibberish. We were called and went to the local hospital to find out what was happening, this was on Thursday the whatever of November - not last Thursday but the one before.
We got there and the only things coming out of her mouth were gobbledy gook! What Stacy thought she was saying and what she was saying were two completely different things. But she seemed to get worse and harder for the doctor and nurses to deal with whilst we were there. So we left on their instructions. We went and bought her a new dressing gown (bathrobe) because she had burnt a hole in the new one we bought in August and had some lunch (I think), but I know we just stayed in Watford for around an hour or so.
We went back again and she was in the Resuscitation Ward which scared us silly (I would use a word like shit here but it might offend some people so I won't).
They next day she was moved to AAU which stands for Acute Admissions Unit and was in a ward, still not being understand. By this time they had taken bloods etc and now moved her to a single room because they weren't sure if she was having a Crohns attack or not and just to be careful in case it was an infection they thought as she was being so sick etc. she would be better on her own. The doctors ascertained she was having a Crohns attack so more steroids were intravenously administered and she had a chest infection so they also gave her intravenous antibiotics for the next week and she got remarkably better. So they moved her to the Crohn's Ward. All was going swimmingly until last Saturday, when she had been in for over a week, and Stacy said she really didn't feel well. She said she was getting pins and needles all over her body and everything was sort of tingling.
On Sunday, when she felt worse, they did more blood tests and an ECG (Electro Cardio Gram) and found out Stacy was lacking in oxygen and her level was down to around 82 instead of the 98 it was supposed to be. From the blood tests they found she was lacking in various minerals that one needs to live. Stacy now had two cannulas, one in each arm with two or three on each, and was given oxygen by that nose thing you see on TV, calcium, potassium and magnesium because these were the things she was lacking in her body. What a nightmare to be honest.
 |
| Stacy this past Sunday |
The lack of oxygen was from the PVOD and they performed an ECG and kept her on a heart monitor for two days. This really scared us witless and I really thought it was the end last Sunday.
Thankfully, however, by Monday she was feeling a lot better and the scare, this time, stopped. However she was still tingling and had pins and needles all over and this was due to lack of calcium still. She is now under an Endocrinologist, this relates to the Endocrinology Unit at Hammersmith, but in the meantime before we get back to Hammersmith next week, she has been assigned one by Watford General.
So that's all that has been happening. Not fun but hey nobody ever said that life was meant to be fun.
Until next time
Pat xxx
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