Steps in the Right Direction

Now five months on and Jennie is still in the Rehab Hospital receiving intensive physio and group work, which yesterday included making fudge. Jennie’s contribution was in the stirring and very tasty was the finished product in the eating.

Eating is still a major problem area, Jennie experiencing difficulty in swallowing anything other than mashed food. We are told this is due to incoordination of the muscles of the mouth and throat, so that they do not work together to pass the food down into the throat. This is really getting Jennie down as she is making real progress in other areas.

She is now able to walk with her zimmer to the dining room and sit in a normal chair and is buoyed up by the fact that she is scheduled to leave hospital in three weeks time.

Jennie is getting used to transferring to/ from our car and today was driven around the city to get used to the experience.
Five months is a long time to be out of doing normal everyday things but GBS was always ‘getting better slowly’ and thankfully Jennie is now almost fulfilling the medics prognosis.

Not surprisingly she does get very emotional but is looking forward to the day when she can cross the threshold of her new home.

The Barthel Index

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.

Three Steps forward and three Steps back

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!

The nerves regrow

It’s like a baby becoming a child.  The parents don’t see the change as the child grows older.  The change is gradual, imperceptible but real all the same.  The grandparents see it.  A lot changes in two weeks, a month since the last visit.  A little more steady on the feet, a few more words. Change.

It’s the same with Jennie.  Two weeks ago she saw her grandchildren, she couldn’t reach out to them, hold their hands.  Her hand would drop to her lap and she would need help to get it back to the arm rest.  Two weeks later and she can extend her right arm.  It can move down, she can raise it up.  She doesn’t see it but she is making amazing progress.  She really is getting better.

A month ago the discharge date of the beginning of December seemed like a pipe dream.  Now it is looking realistic.  She’s got her goals set and shes meeting them.  On friday she was standing.  Yesterday she could extend her legs up and out.  The left arm is still a little slow and the fine finger movement isn’t there, but change is certainly in the air.  GBS- Getting Better Slowly.

Replacement of Burst Balloon…

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.

Three Months on and Nearly Standing

The physios are working me hard and after 3 months since the onslaught of GBS, I can with help move from a low bed to the wheelchair which necessitates putting a certain amount of weight on my legs.
It’s all rather frightening as I still have little strength in my hands and arms.
My swallow is getting better and I was able to have pureed peaches and custard yesterday. Delicious, although I wished they were straight out of a tin!
I am still unable to drink and my mouth, whilst better is always very dry, but thankfully is now not like a carpet.
However I get tired very easily which I am told is a sympton of GBS. Another 5Kgs in weight lost. Looking forward to a new wardrobe! New Year sales here I come!

Swallowing and Goals!

Today I passed the swallow test. Apricot yoghurt-absolutely delicious!

What I yearn for now is a gin and tonic with a lobster starter followed by a cold sausage washed down with coca cola. (No she hasn’t lost her marbles! – I think. Ed). However before this can happen I have been set lots of goals:

• To be able to swallow solids,- the next step is pureed food and thickened fluids
• To sit up,and regain arm strength so that I can turn over by myself
• Feed myself
• Transfer to a toilet on my own
• Stand and walk a little

This will mean lots of physio but the really good news is that if I do as I am told, they say I should be out of rehab and home before Christmas. I can’t wait!

Getting a Grip!

Now that the infection in my rig (stomach tube) is almost better following a course of antibiotics, I was able to sit on the edge of the bed and supported by a physio, she let go and I was able to support myself without falling over. She then gave me a toothbrush to hold and with a little help I was also able to open a small jar. Went back to bed exhausted.

Blog by Jennie

‘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!’

One Giant Leap Forward

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!