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Six months ago the consultant took us into a small room and laid out the facts that she knew at the time.  She explained GBS, what it does to the body, what we could expect, the best and worst case scenarios (with an emphasis on the latter).  But she couldn’t answer the one question we wanted answered more than any other.  How long?  With GBS it’s impossible to say she told us.  Will Jennie be back home for Christmas?  Maybe.  But given her age, the severity and speed of the onset we left with the feeling that she would bet against it.  We wouldn’t.  Home for Christmas was to be Jennie’s goal.

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Jennie’s wish to spend Christmas Day with her family has come true. She has now been out of hospital for two weeks and readjusting to a near normal life after such a horrid experience of being literally struck down with GBS almost 6 months ago.

“Oooo, you do look well” vistors say as they’ve dropped in over Christmas.  Her speech is getting better, she can walk with a stick, she can eat by herself.  But there is  still a long way to go.  Walking any distance is hard and climbing steps is a still distant goal.  She has difficulty in holding a knife and fork and eating anything but the most soft of foods is impossible (she did manage Christmas dinner chopped very finely).  Flashbacks to the nightmares and hallucinations in the hospital upset her; keeping this blog has been useful as a historical record to set her mind straight as to where she was.  Her immune system remains fragile, we must hope that she avoids any complications.  A trip to the dentist revealed that there were no real problems with her teeth as indicated in the last blog.

With physio at home now a distant promise, a Wii Christmas present should be some form of motivation. Carers arrive every morning at 7 am to wash and dress Jennie, and we are very grateful for this service.

But this post today should be all about Christmas Day which Jennie enjoyed immensely. The eagerly looked forward G&T was unfortunately not to her liking but a small sherry or two certainly made up for this.  She confounded exectations and did what we dreamed of, she spent Christmas day at home in the company of her husband, two sons and grandchildren.

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Jennie writes

After a long blog break, things have moved quickly. A real treat this weekend as the Hospital has let me go home on the basis that I return in time for tea on Sunday. What is even better is that I will be discharged from Rehab on Monday. All mobility aids have been delivered to the new house my husband bought while I was in hospital.

Luckily I am quite happy with our new home. My mobility is improving with the aid of a Zimmer frame but my hands only just about grasp a teaspoon to feed myself. My swallow, jaw action and speech normality have still a long way to go before I am able to eat and speak as before. The treatment I received at the hospital was first class, the physios working me hard to get me mobile. I now need action on my upper limbs and help with my grip and shoulders. After almost 6 months of minimal dental hygiene, I fear a spate of tooth extractions, although hopefully the current course of antibiotics will cure the underlying infection. This is one aspect of GBS which is not covered in the text books…

Jennie’s progress in Rehab is now being monitored via a modification of the Barthel Index. The Barthel Index consists of 10 items that measure a person’s daily functioning, specifically the activities of daily living and mobility. The items include feeding, moving from wheelchair to bed and return, grooming, transferring to and from a toilet, bathing, walking on a level surface, going up and down stairs, dressing, and finally continence of bowels and bladder.

The higher the score the more “independent” the person, a score of 20 being the target score. Independence means that the patient needs no assistance at any part of the task. Having started at zero 8 weeks ago when Jennie was totally dependent on the nurses for all these functions, she is now scoring 6 which is giving her lots of encouragement. With less than 30 days before her forecast discharge date, the magic 20 score seems a long way away. Everyone at the hospital is doing what they can, especially in terms of nursing care, physio and OT to make this happen by the due date.

The staff are just fantastic as is Jennie.

Four months on, and Jennie today took her first tentative steps. Three steps forward with lots of huffing and puffing and then 3 steps back with no huffing and puffing, the seat behind her acting as a magnet!

Real progress is now being made with Jennie able to swallow fluids, eat soft food and transfer on a banana board from her bed into a wheelchair.

Still a long way to go as her left arm remains very weak and little grip with either hand. Having said this she has mastered the art of turning the pages of her magazine collection with her good right hand and is reading again and changing channels on the TV in her room.

Another milestone!

Whilst the swallow is beginning to come back, Jennie is still being fed liquids through a tube directly into a stomach (to avoid the risk of aspiration pneumonia the tube is still considered an essential for fluid/ medicine intake).  Yesterday the tube fell out.  It was kept within the stomach by a balloon which appeared to have burst and without this in place Jennie could not receive liquids. Fortunately the nurses were able to replace it with a catheter which kept the hole intact.

Usually Gastric tubes have a life span of about six months but not this one, so yesterday Jennie was ambulanced to the General Hospital for its replacement through the existing passage without an additional endoscopic procedure. This lasted just a few minutes and Jennie was safely returned to Rehab.

Apart from this bit of excitement very little is happening on the movement front but Jennie is perervering with her physio and elocution practice and happy that some progress is being made. However she can’t wait to get off the pureed food.

‘I am dictating this to my husband sitting in the sunshine by a pond at my new home in a very comfortable wheelchair. I was lifted onto it by the hoist over my bed. It is nice to have my own room and to have some privacy but I do miss the attention of the wonderful nursing staff and doctors at the Neuro Hospital.

It is great to breathe fresh air again but annoyed that I still have to be accompanied wherever I go by my mobile food dispenser as I failed the swallow test again. This time it was fudge yoghurt. I can’t wait for a tin of peaches I would like to eat sitting by a pool in the Carribean!

I would like to say a very big thank you to everyone who has sent messages of goodwill, prayers, cards and has visited me. All these have kept me going during this awful experience. Next week they hope to be able to give me a target discharge date. This year or next year I wonder!’

Out of the blue we got the message that Jennie is now sufficiently well in terms of not needing so much nursing, to be transferred to a Neurological Rehabilitation Unit. This is a totally different environment from the Hospital where the emphasis is now on getting her body working again. Nurses, doctors, physiotherapists, occupational therapists, dietitians and speech and language therapists work as part of a team with the aim of getting patients as independent as possible. Discharge is planned to coincide with the time that the patient no longer needs to be in hospital. So is it too soon to look forward to having Jennie home by Christmas?

Keep watching this space!

A small milestone as today all tubes have been removed from Jennie’s face and she is once again breathing without assistance. The tube in her stomach seems to have settled down with the usual feed, water and pain killers going in nicely.

The best news is that she can move her right hand up and down a little but frustratingly she is still unable to swallow.
Jennie’s big wish is now for a tin of peaches as well as a cup of tea!

With one and a half bottles of the 15 prescribed for the IVIG treatment left to run, Jenny was taken down to Theatre for a gastrostomy operation to insert a tube into her stomach. This left her uncomfortable and worried that this interruption may have some effect on the power of the IVIG juice to work its magic. Time will tell..

Later despite an early blockage in the new tube, she is sitting up and much happier with life in anticipation of the early removal of the nose feeding tube, and hoping that all the bad antibodies in her immune system have now been chased away.

Jennie had a steady stream of visitors today.  The  Neuro Doctor, Dietician, Occupational Therapist, Speech Therapist, three Physios  and even the manager of the Rehab Centre to do an assessment.

‘Try and do everything they ask’  is the message we are trying to get across to Jennie. Has she the willpower to cooperate?  We do hope so..