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Irene
2nd April 2012, 09:04
Irene here I have just spent the last four days by Johns bedside in hospital.He as aspirated pneumonia again.He does have a peg in situ but could still eat a bit of soft food.He had a very bad choke last week and ended up with food in his lungs so it was a dash down the motorway with the usual blue light transport and into resus.He was so very ill for a while there and after 19 years with this damn disease I thought his time had come.Im happy to say hes on the mend again but wont be eating again.The time has come for full peg feeding.Hes been so reluctant to give up feeding because he saw it as another step back but now agrees he cant go on with it anymore .So instead of just top up feeds its full feeding.Earlier in the disease he used to recover more quickly but as the years have passed it takes much longer.The ward he is in is very busy and they like to get people out as soon as they can.They said he may be able to come home today cos I appear quite capable of taking care of him...........................I know my husband and believe me he is nowhere near ready to come home,each time they reduce his oxygen his sats drop into the 80s and they said thats satisfactory...................twice last night they had to get him on the nebuliser cos he was struggling to get his breath.So I think Im in for a bad time when he gets home.He has had a reacurring chest infection since January and all our doctor kept doing was trying different antibiotics,still wouldnt take him to hospital when it didnt clear up.The hospice nurses even said she should have been admitted.Sometimes I think these proffesionals must think lets just see what happens cos hes got mnd so whats the point.Sorry to go on for so long but I had to talk to someone this morning cos I woke up feeling so down and thats not like me at all.I always try to keep upbeat and have a smile on my face,today for the first time in a very long time the tears flow freely xx

Irene
2nd April 2012, 10:46
quick follow up just had a call from the hospital would i go over and get John washed and dressed they are sending him home cos i am more than capable of looking after him now with antibiotics at home x

Robyn Copley-Hirst
2nd April 2012, 11:50
Morning Irene,

Obviously we can't know or discuss all of John's details on the forum. I've had a discussion with our Connect team and they would encourage you to give them a call if you feel you need some support on this. They may be able to help you discuss John's discharge with the ward and the timing of this as well as his care needs, which may have changed during or before his hospital stay.

Their number is 08457 626262 and their offer to talk is there if you need it today or going forward as support for yourself.

Best Wishes and I hope today goes well for you both,

Robyn

pete
2nd April 2012, 17:17
quick follow up just had a call from the hospital would i go over and get John washed and dressed they are sending him home cos i am more than capable of looking after him now with antibiotics at home x

Hi Irene,

Sorry to hear of Johns problems but also very glad to hear he is on the mend again, and i think after the last 19 yrs you will no doubt be far more capable of looking after him than the hospital, So hope all goes well once he is back home.

regards

pete

Jeannie
2nd April 2012, 20:05
Hi Irene,

Sorry to hear John hasn't been well, but like Pete I am glad he is on the mend. Love to you both xx

Irene
3rd April 2012, 11:03
Thanks everyone after a 5 hour wait sat in the discharge lounge they finally fetched us 2 bottles of antibiotics and we came home.John had a very bad coughing fit about 10pm and it was hard to try and keep him calm because he was panicking I put him on the nebuliser and he calmed down a bit but it was still a bad night for both of us.I was up early but hes sleeping sound at the moment.So hopefully when he wakes he will be feeling rested.No one really gets much rest in hospital do they .Love to everyone xxxxx

computatec
5th April 2012, 17:34
It is a sad fact that hospitals are very ill equiped to handle MND patients and we tend to deteriorate rapidly if kept in hospital. I have been discharged early three times, once being, sent home in an ambulance at night, because the hospital thought I was safer at home with my own equipment etc. I am sure your husband will be more comfortable in his own home and recover quicker.

Irene
6th April 2012, 13:46
Thank you computatec he is so much happier now hes home but the breathing difficulties continue,and the uncontrollable coughing fits but at least I am on hand to see to him right away.I do agree with you,the hospitals dont seem to understand.When John went onto a ward from resus I had to wait outside till they put him in bed,I said I could help as John needs to be positioned right.I was told they know what they are doing.The nurse came out and asked me if John was always so stiff or was he being difficult..................I explained John had gone very stiff due to spasticity in his limbs but she said she thought he was just resisting them.I wasnt happy to leave him there at all.Each time I went in he had no call button nearby and always needed something doing as soon as I went in.For example he had asked to go on a commode at 10am and was still waiting at 1pm when me and our son arrived.We took him to the bathroom and sorted him out.I think the medical staff in many hospitals should be made aware of the needs of mnd sufferers along with other disabled people.John lost his speech many years ago and uses a lightwriter and the times hes ignored is unbelieveable.I hate to think what goes on while Im not there x

computatec
7th April 2012, 17:26
Irene, you have had a very bad experience. I have just been in hospital again to have a feeding tube installed. I was admitted to Addenbrookes, referred by the MND care centre there. I was admitted to a neurological ward where the care was superb. Fantastic staff and plenty of help with personal care, toileting and all those things we find so hard to manage. After five days in the ward I was still in good shape and had not deteriorated at all.

The best thing I ever did was to make contact with my nearest MND specialist care centre. They are a multi disciplinary team funded by the MND association and the NHS and they are able to make things happen for you. I live 50 miles away but they have mobilized all the services I need locally.

Clive

Irene
7th April 2012, 20:51
Hi Clive thanks for all your replies it does feel good to be able to talk.John had his feeding tube put in last august and feels a lot better having had it done.We have a MND care centre in preston which is around 25 miles from our home I do think its a lot better and in my opinion safer to go on to a neurological ward for any proceduere at least they seem better equipped and an understanding of ones needs.John is waiting to have a suprapubic cathertar put in due to problems with external sheaths and I do hope he goes into preston hospital to have it done.

computatec
9th April 2012, 15:47
Hi Irene,

Now we know how things work I think we have to be pro active to get what we need. You could talk to your care cenre coordinator and ask if they could manage Johns referal for the catheter and also get him into a neuro ward. If you don't take charge and organise this it will be in a general ward with no understanding of MND and our special needs. Go for it! You will be surprised what you can do.

Clive

Irene
9th April 2012, 17:55
Thanks I will do that.I am ringing his MND nurse tomorrow to talk about it,I need to know that he will be safe and well cared for by people who understand the needs of MND patients.I need to be sure of this for my own piece of mind.I am normally a very quiet person.....that is till it comes for fighting for things to make life easier for John then Im afraid this mouse comes out all guns blazing.I only take so much.I will let you know how we get on,thanks for taking the time to reply to me xxx Irene

miranda
9th April 2012, 20:18
Good for you Irene. Best of luck.

john
10th April 2012, 00:34
Just burying the flower seller.

John

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