John in hospital

[2_DallasCowboys]

Hi, Yvonne!

I agree with everything Drinkboy
has previously posted.  Tryto get John to
move around as much as you can -

And plse take care of yourself

Anne

[jessup]

 
Dear mate
You truely are a wonderful carer
I admire your strength and ability to support and care for John
I hope John gets stronger so you can get to the renal clinic
I agree that it is heart wrenching and tiresome to motivate our loved ones
Drinkboy has certainly given you some wonderful advice and support
I have no words of wisdom but
I send lots of love and prayers to you both
Here's some flowers for you  too
 

[rose1999]

Yvonne I was just wondering, what does the nurse actually do?  I ask because the District Nurses have been asked to come and see Dad now he's home, well they came Thursday and were no use at all .  I was at work - they just turned up, but whatever Mum asked for in the way of help they said they didn't do!!  All they did was look at his foot and say 'that looks sore' - he either has gout or circulatory problems, I wanted him to see the GP but he was so convinced the nurse would sort it, well she's done b***er all!!  Now I have to try to get him to the GP on a Tues or Thurs (non dialysis days) and that means a day off work as our GP have very limited surgery hours.

Dad is always cold, he would lie in bed all day if Mum didn't encourage him to get up (or he has to get up to go to dialysis) I know his circulation is very poor so maybe that's one of John's problems.  I think poor circulation causes cold and also tiredness as the oxygen isn't being circulated as well as it should (just my theory).

I hope things improve for you 

[Yvonne]

Hi Rose, the only reason the nurse comes in is to redress John's wound.  Where they operated this time and last time (about a 10 inch cut running down his tummy) it will not heal, just leaking all the time. The nurse says that is good shows all the infection is coming out. I suppose she knows best, I'm not aloud to touch it but she asked me to pick up this cream from the chemist, when I read the insructions it says apply 3 times a day, she only comes in once a day !!!!!!!!  I asked her if she could take John's blood pressure and temperature but she said she's only allowed to attend the wound. I must phone up the doctor or try to take him to the surgery, no way John's not back on his feet yet.  As it was I had to cancell his renal check up that was for the 13th Feb. and are waiting for them to send me another. I wish they had transfered him to the Queen Alexandra hospital to do the big operation he has just had and then they could of kept an eye on his kidney function.
You know if the Dr. had taken note of us keep telling them how big John's Hernia was getting instead of keep supling him with different sorts of belts this would not of happened, he landing up nearly dieing with a strangulated bowel, if I had left him to the morning the Dr. said he would not of been here.
I do hope your Dad improves love and hugs Yvonne

[rose1999]

It's a nightmare isn't it, I've no idea why the nurse comes to Dad (he doesn't have a wound) as she too 'isn't allowed' to do anything and they never offer to get the GP to call or suggest any help at all. She's coming once a month,I suppose it's a nice trip out for her!!  We are in the same boat that if the GP had acted sooner (when Dad first went to him 8 years ago) we believe his kidney may have been saved, but we can't prove a thing and anyway even if we could it's done now.  All we can do is the best we can with the hand we've been dealt.
Thinking of you 

[The Wife]

Thanking about you and sending love...

[Yvonne]

Sunday 10.30am  The nurse came in again today to dress John's wound, she is not happy with it as it has now opened up in 2 places.  She's coming in every day to change the dressings. On Monday she wants to take some swabs and take a picture of it !!!!  She is also going to ask the Dr. if he will prescribe John some forty fide drinks, he was having them in hospital and is asking for them again. He is hardly eating at all and still sleeps most of the day and night. I managed to get him up for an hour today but he is so weak, and I am so worried about him.
Yvonne

[breezysummerday]

Yvonne, do you take John's temperature?
A rise in temperature would be an indication
of an infection. 

I can't believe the Nurse is limited to
changing dressings....I'm really confused about that.
I'm wondering why she couldn't draw labs too.

Now, as far as John not eating, maybe some low sodium
broth.  (You know the old saying about chicken broth)
A bit of apple sauce or gelatin, he needs to eat
to help him heal.

Oh my, please take care..... ...and keep updating

deborah
 

[drinkboy]

Yvonne,

I am not sure if this will help...I know for years my mom used Boost ( an energy drink ) and then she eventually went on a high protein powder drink mix, called Beneprotein.   That helped her get some protein and calories that she was missing from not eating much.  Maybe one of John's  doctors can suggest something like that and it could help?  In any case, I hope his wound heals and gets better because that is high priority.

I am looking forward to a good update soon   

[The Wife]

How about Ensure?  The nutritionist ordered and sent this for my hubby.  He can also add his protien power to it....seems to help on the days he can't eat much. 

Big hugs to you Yvonne.

[rose1999]

-. 

I can't believe the Nurse is limited to
changing dressings....I'm really confused about that.
I'm wondering why she couldn't draw labs too.

- 

We're having the same issues with nurses, whatever we ask they say 'we aren't allowed to do that' or 'we don't do that' ............it seems that they can change dressings  or remove stitches and that's your lot.  Perhaps it's different in the US but in the UK it seems the same story in many instances.  I can't see any point in them coming to Dad once a month as he has no dressings for them to change, I really do think it's just a day out!  And 2 of them come together, why? The only thing I can think is that they are coming into people's houses and need to be witness for one another, sad reflection on society if that's true.

Yvonne I hope things will take a turn for the better real soon. 

[Yvonne]

Monday 16th Nurse came in today and took swabs said it would take 2 days for results, it's opened up even more today, I'd be scared to move if it was me, but lucky for John he is lying down and can't see it. I had a call from the Dr. at 2pm to say come down and pick up a prescription for the Nutricia Fortijuce High energy drink. Off I went, gave the prescription to Lloyds chemist, the chemist man came out and said sorry we don't keep these drinks in they have to be ordered, so I took the prescription off to Boots the chemist and they said the same thing so I left it with them and I can pick them up on Wednesday. The only other drink I could get him is Complan. I have also asked the nurse if she could arrange some one to come in and do a blood test for his kidney function, but she said I have to arrange that myself with the Dr.
 

[rose1999]

Oh Yvonne isn't our system just so frustrating 

Dad had those drinks but didn't like them much, I don't know if you were offered them but they also do a type of dessert in about 4 flavours and he got on much better with those.  Again they have to be ordered in by the chemist so if you think John would like them then I'd suggest you get on to the GP for a prescription asap.

Life seems just one long battle at times. 

[Hilrose]

Hi Yvonne, you doing a wonderful job, but please look after yourself too.

I understand it must be difficult but please try and encourage John to get up moving around. When i had my transplant I was in hospital for sometime and I didn't get up much myself my blood count was so low, I was depressed and very poorly and because I didn't get up and move around enough I ended up with DVT and an pulmonary embolism.... but thanks to getting short of breath and getting to the hospital in time they managed to save me... so please I encourage you to encourage John to move about a much as possible, because you don't need more worry...

One Love
H

[Yvonne]

    I really am trying to make John move around but I'm turning into one big nag. He just tells me to leave him alone, says he will be alright as soon as he feels better. If he does get up it's just to sit in a chair and the longest he does that for is an hour and then it's back to bed. The nurse tells him he will get bed sores if he doesn't get up more. We should get the results of the swab today hopefully. He has started on his Fortysips drink the Dr. said he could have. We know what he really could do with is lots of eggs, cheese and milky food but that is not good for the kidney function, I wish we could get that checked out. I think that would put John's mind at rest.
Thanks every one Yvonne

[breezysummerday]

John might be in a bit of bodily shock from all of  the surgery
and his brain is telling him so.. That is a good thing in a way,
when you consider John's age and medical set backs.
Keep making him get up into the chair, tell him it's therapy, it's called dangleling.  "John, we have to
get up and do a little dangleling"...doesn't that sound funny?  However, it's so important.
Just sitting up at the side of the bed will
get his heart pumping and his lungs expanding..and hopefully engaging his appetite, plus
sending oxygentated blood to his extremities.

Now...

I wish you were my neighbor! ......Yvonne, you are doing an excellent job!

Truly comforting HUGS for all that you do   

[drinkboy]

Yvonne,

Keep it up..you're doing great.  At least getting John up to the chair for an hour is better than nothing.  As Breezy said, even sitting up in bed, especially sitting on the edge with legs hanging over for a little while is good.  Hopefully each day will get a little better, and when you get the energy drinks, that should help too.

I know it's tough to keep nagging him to get out of bed or sit up or eat, etc, but it's a necessary evil.  I know when my mom was going through this same situation, there were times when we had to back off a little but you still have to keep on them.

 Remember to take care of yourself too.

[The Wife]

You're doing a great job Yvonne.  I'm sending you lots and lots of love...

[Yvonne]

John woke up Wednesday morning being very sick and running a temperature. I left him for a while knowing the nurse would be here soon, but sods law she didn't turn up at her usuale time, so I called the Dr. to come out. I rang the Renal unit and they said it doesn't sound like kidney failure see what the Dr. says. The nurse turned up at 11.45am she didn't change John's dressing as it had not leaked through, but she said see what the Dr. says.  The Dr. arrived at 1.30pm examined him and scratch her head. She said she won't give him antibiotics because she didn't know what is wrong with him, she took a sample of urine, which I had to do because she had never handled a urostomy bag. She left saying she would phone back latter to see how he is. She did phone back at 5pm to say the results of the swab had proved he did not have an infection in the wound, but the urine results will not be back until Friday. The renal unit rang me back to ask how John was and said I must make sure his blood was taken on Thursday. John's temperature dropped as the day went on but he did not feel well enough to even sit up on his own. He had a good nights sleep and on Thursday a nurse came in to take his blood, she wanted to do it from his right arm but I said she couldn't because of the fistula she said she had never heard of that before !!!! anyway she tried to take it from his left arm and it took her ages infact the last sample , the main one for the kidney function she could only get a small amount. Poor John we had to put an ice pack on his arm after that to stop it swelling up. Away she went and then the other nurse came in to change John's dressing. Away she went and then a Dr. came in to check on John, all said they do not know why he had been so sick on Wednesday but I must call them if I am worried again. I have had to change John's dressing 3 times since the nurse came as for some reason the bags keep leaking, and the urine is soaking into his dressings. I will phone the Stoma nurse today to see if she had any suggestions as to what I can do, I'm feed up with all the washing of John's clothes and bedding that it is making.
John was a lot better on Thursday managed to get him to sit up shave himself, and then sit out for an hour. He badly needs a hair cut, hair wash and a shower, maybe next week. It's so difficult doing bedbaths.
I dropped a hint to the nurse hoping she may suggest a nurse could come in to do a bed bath for him. Oh well I'll just try and manage on my own. Yvonne

[rose1999]

Yvonne you have my sympathies.  Ask Social Services about the bathing, Mum asked the nurses and they said "we don't do personal care" [We are still trying to find out what they do do!!] "social services will have to arrange that" - but they didn't give Mum any contact details which was really useful 

No-one seems to care or to take responsibility for carrying anything through and you're very much left on your own.  Sendig you a hug because I know what it's like and how much you need one  wish I lived nearer. xx

[paris]

Yvonne,  You are such a loving, caring wife.  I am sure you are exhausted and need some time for yourself.  I wish so much we could all come over and give you some help.  We all think you are incredible and John is so fortunate to have you in his life.   Sending you love and good thoughts   

[Yvonne]

Friday, the nurse came in as usuale to change John's dressing, John made all the excuses why he wasn't going to get up, so I left him till dinner time.  Made him get up to eat a little dinner then soon after he went back to bed again, he said he didn't feel well, I said shall I get the Dr. he said no. 5.30pm the Dr. rang me to say she had the results of his blood and the urine and both are showing signs something is wrong. She is making arrangements for him to go back into hospital, she said it's not urgent but thinks we should try and find out why he is not healing and getting better. I felt a sigh of relief, I wanted him to go in on Wednesday as both John and I knew something was not right with his body, he has been out of Hospital for 10 days now and no sign of improvement. I'll keep you updated as to how he is Yvonne

[pelagia]

Yvonne, You are doing an amazing job of keeping up your spirits and energy during this trying time. That must be an enormous comfort to John even if he is not well enough to tell you.  I also hope they will diagnose John's condition soon.  It's infuriating when you know something is wrong but the medical team can't figure it out.  I've seen this with my own father. 

[rose1999]

Yvonne I'm glad John is going back into hospital, I know it's not nice to be in there but it really is the best place when he's so poorly. It will give you a bit of respite too, I know you will have to travel to visit but at least you can sleep at night and you know someone is keeping an eye on him, the responsibility of looking after someone who is ill is enormous. The days are pulling out and I hope the weather is improving with you (it is here, the sun is shining and it's almost spring like).

We all care about you and I know what you are up against with the NHS as we have a lot of the same issues.

Stay strong and let us know how you are when you can.
Rose xx

[paris]

It is good news that John is going back to the hospital.  You need others to help take care of him and maybe you can get a little rest.  Keep us posted.