Hi my name is Helen and 32 days ago my son had an accident which then led to a heart attack unfortunately by the time he was found and resuscitated there was some brain damage. He was placed in a medically induced coma for 5 days and were told that he would probably not make it. Once they woke him up and turned off the ventilator he looked quite peaceful and eventually he opened his eyes . I could tell straight away he was still there, but the doctors and nurses did not. The next day my brother-in-law and niece visited him and they phoned to say that they didn't want to build our hopes up but that there was some improvement and the doctors were going to do another EEG. The doctors said there was some activity in the brain but still he would probably get a chest infection and then pneumonia and then pass away. He was moved to a stroke ward for the past two and a half weeks he has been nursed on the floor on mattresses as he will not stay in the bed. He is six foot tall when he went into hospital he was 11 stone and now he is 8st 7lb. His swallowing has improved and he is now on mashed up food so he should start to put on some weight over the next few weeks.
We are currently waiting for him to be moved to a neuro rehab ward but the list is long and i am worried that this will take weeks before a bed is available.
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Hi, 2 years ago my Dad a suffered a severe brain injury following a cardiac arrest and so your experiences are familiar to me save that it must be beyond agony to see this happen to your child. I'm a mother too. I could write a book about our experiences with Dad but in short summary I remember we did go through a time when Dad was still on the strokes ward and we were anxious about whether he was getting appropriate care and whether there was a proper plan for what would happen next. I would suggest asking for a meeting with the consultant neurologist whose care he is under. Get them to explain what therapy is being provided at present and what is the purpose of that therapy. In the meantime, read all the leaflets that Headway provide, which are very helpful. I remember thinking at the time that Dad wasn't getting enough therapy on the strokes ward, but in hindsight, I think in those early stages his brain was so exhausted with trying to heal itself, he was probably getting as much therapy as he could cope with at that time. It was a big comfort to my Dad just to have familiar people sit with him. It was easy to underestimate quite how confused he was at the beginning. My best hopes and wishes for you,
thanks I think you are right he is very tired as he is constantly trying to get up and is confused when he is unsuccessful. He just wants to get up and walk but i think if he could he would be gone and he is not really aware of much at the moment due to the brain injury
Welcome Helen, Very, very best wishes to you and your son. Keep asking for what you need, lists may be long but if you keep on pushing your son should get the help he needs.
Welcome to the forum Helen. I can only echo what the others have said about pushing for rehab. And the point made about more resting/healing time being helpful even now, before rehab is started, is something you might consider.
Most of us have suffered the acute fatigue (among other symptoms) whilst our brains have been trying to recover, long after discharge from hospital, and it's now a documented fact that this delicate, complicated organ needs much longer than once believed to reach optimum healing. So you might take comfort from knowing that, unlike other organs, your son's brain is constantly striving to repair itself and will need lots of rest for many more months.
Keep talking to your son Helen, and touching and reassuring him and, if possible, give him short periods of his favourite music via earphones to re-connect him with reality. It can take weeks/months for brain injured patients to grasp where they are and even who they are.
I'm so sorry for the predicament you find yourselves in Helen ; I know I'd find it heart-breaking seeing any of my children in such a situation. My heart goes out to you and I dearly hope to hear some encouraging reports from you in the near future.
Sincerest good wishes for you and your son, from Cat xx
PS. Helen, please phone the Headway helpline on 0808 800 2244 (free call, office hours) for brochures which can fully explain your son's condition and other brain injury related issues. You'll talk to a kind & sympathetic person.
Please come back to keep us informed of your son's progress. xxx
Hi Helen I'm so sorry, what a terrible situation you find yourself in so unexpectedly. I do hope your son gets the correct rehab placement although it must seem like an age waiting for this to happen, as everyone else has said, keep enquiring about what his care plan is going to be until it gets sorted out. I'm afraid I spent time on a stroke ward after I left neurosurgery and can't say I much appreciated my time there. It must be really confusing for your son. I'd echo cats suggestion of familiar things, company and music to help him regain some sense of self. Sending you a hug
Hi Helen,
I'm so sorry that you're having to face such a terrible ordeal. I also echo the very good advice given by the other members here. I would add that you may want to speak to a nutritionist/dietition. Does your son normally have a high calorie diet? Some people just need the extra calories to maintain weight, I am one of those people. When I had my accident, despite eating the maximum I could get on the hospital menu, plus things brought in for me I still lost roughly a third of my body weight (from 9 1/2 stone down to 6 1/2) in a few weeks. The nutritionist/dietician prescribed high calorie milkshakes to take as a supplement which did help. Hopefully you can discuss a plan with the nutritionist/dietician to keep his physical strength up. Make sure he gets the extra supplementation, my sister did have to remind the nursing staff numerous times daily! Keep reassuring your son that although he's confused, he's very sick but you are there for him and he is being cared for by professionals. My thoughts are with you during this trying time. Make sure you look after yourself properly too. It's easy to neglect your own needs while you, understandably, put your sons needs first! x
thanks, it is very difficult as I work full time in the NHS as does my husband and although work is really understanding we still have to carry on with the day to day duties we are employed to do - My daughter has stepped up as has my son's partner and they have been there from 10am through to teatime making sure that the nursing team are on their toes as it were (they have done a brilliant job so far) as they are all so busy and the ward is full of elderly patients who also require a lot of support so its good to know that both girls are championing his case.
The dietitians have been great and have initiated Calogen together with the sip feed yogurt things and the sister on the ward was so fed up with the housekeeping sending him unpalatable meals that she requested more of a selection of mashed up food, which he seems to be enjoying more.
My son has just started to speak and has walked the whole length of the parallel bars with some assistance so he is on the right path and once he gets to the rehab ward he plus the family with be relieved.
Hi Helen, what an awful thing to have happened and such a difficult thing to cope with. A similar thing happened to my husband so I do understand a bit. Its a tough tough time but it does sound like he is making progress which is great. IS there any news on the rehab bed yet? My husband had to wait weeks and weeks but actually the occupational therapist in the acute hospital was very good at giving him things to do and suggesting things for me to do with him. I hope you are being supported well and things continue to improve. Take care xxx
Hi Whilst on the ward that my son is currently on we saw someone that we knew and told them our plight and they said they would do what they could. That was last Tuesday and we are hopeful that he will have a place very soon. The neuro consultants have stated today that he is medically fit to be discharged to the neuro rehab ward, which is much closer to home and that will be fantastic. He is putting on some weight which is good as he lost over 2 stone but he is extremely frustrated as he is trying to do all sorts of things and getting angry when he fails.
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