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As part of Jennie’s physio tratment, she was today wheeled in a special wheelchair to the entrance of the hospital past the shops including a stop at a dress shop and into the fresh air.

This outing also included some physio work in the gym but during the process her feeding tube became blocked/ kinked.

‘Go to the shops and buy a bottle of coca cola’ asks Jennie, ‘Why’ says I. ‘The bubbles will unblock the blockage’ say the nurse. ‘You are pulling my leg’…

But no… Despite the coke being forced down the tube, the blockage remained, being resistant to the corrosive properties of the coke. Much pain later the tube was replaced and food and drink restarted.  So Coke yes, but still no cup of tea. Her swallow remains a problem.


Jennie has lost one and a half stone in five weeks.  Lots of lying on the back and liquid diet up the nose.  There are better ways of loosing weight.

Five weeks on her back staring at the ceiling, no idea what is going on around her.  Bad dreams creeping up, the nights are the worst.  But let’s focus on the positive.  Yesterday was another milestone day,Jennie was lifted out of the bed and sat in a multi-gym wheel chair for an hour.  Happiness abound.  A champagne moment?  Since all this began we’ve talked about cracking open the bubbly to celebrate something, but the nature of GBS is that recovery is so slow and gradual, that real celebratory moment has yet to come.  Maybe when she can swallow and the oxygen mask is removed we can smuggle in a hip flask of fizzy…  But she’d settle for a cup of tea I’m sure.

Progress is real though.  She is talking, and whilst her voice is not her own (a bit squeaky) she can communicate with us and tell us what she feels.  The physiotherapy is starting in earnest.  With the muscles being pretty inactive for the past five weeks there’s a lot of rebuilding and re-learning to do.  There’s talk of her going to the gym later in the week for walking tests.  Unlike most GBS patients it hasn’t affected her feet that badly.  There’s no movement in her arms, but strength seems to be returning to her right arm.

We are now talking about goals.  The doctors won’t commit to dates but we’ve got a vision of her being home for Christmas.

After 33 days lying on her back, Jennie today was maneuvered by 2 physios so that she could sit on the edge of the bed without oxygen, when she promptly asked for another cup of tea!

Blood pressure and temperature OK and no dizziness. Apart from some pain in her right elbow and back, she responded very well. She was told she had passed the floppiness test by being able to sit more or less upright without too much support and being able to move her legs a little.

More action is promised for next week and we now await a visit from the speech therapist to gauge Jennies throat action and whether she can come off the oxygen for good.

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..

Jennie is still living with the uncomfortable oxygen mask on as her diaphragm, chest and neck muscles remain very weak. She is still being fed intavenously but somehow managed to dislodge the feeding tube out of her nose overnight. After numerous attempts this has been reinserted and an XRay of her stomach today has shown that it is nicely in place. Ater 24 hours she is being fed again!

She says she is desparate for a cup of tea but she is likely to be NIL by mouth for some time as the myelin sheath surrounding the Axon central core of her nerves which were so dramatically destroyed by her rogue anti bodies will take some time to repair.

As a rough guide we are told this should be at the rate of 1mm per day which in old money equates to only 1.18ins per month. Must measure the length of her arm! Hope the Neuro Doctor is right when he said that with all the physio she is receiving, we should see some improvement in her movement in 100 days…

Today, after 26 days, Jennie left her friends in the Intensive Care High Dependency Unit for a bed in the Neuro Ward. She now looks quite naked (in a literal sense of course!) without all the lines and tubes and machinery and monitoring screens that kept her alive during this period of intense worry and concern.

We now look forward to the next step in her recovery, ie being able to breathe without oxygen assistance. She is currently needing 45% which when reduced to 28% means that she will be able to breathe on her own. The other good news is that she is being weaned off the insulin as her blood sugar level has stabilised although her temperature is all over the place.

This blog will probably go very quite from now on, at least until there is any sign of movement in Jennie’s upper body. This we are told could take weeks. She is still effectively paralysed but her breathing is improving with 50% help via her oxygen mask and her speech whilst slurred is much better than before. The care she is receiving in the ICU is excellent and I am told that Jennie is a model patient! However the Medics are sitting on the fence when asked how long before she is able to leave hospital.

‘Every case is different’ they say, ‘we just don’t know. The last GBS patient of Jennies age was here for 10 months’

…..Thanks very much!

Not surprisingly she tells me she would welcome visitors to relieve the monotony of just lying their totally helpless with virtually nothing to occupy the mind.

Helene who Jennie has known for over 50 years, visited her today from Paris. It was an emotional reunion with lots of ‘rester forte’, ‘je t’embrasse and bon courage’.

However after 30 minutes Jennie was very tired and Helene went back to Paris having given her best friend lots of reassurance and encouragement.

Each visit now brings the joy of seeing Jennie edge towards recovery, albeit painfully slowly. Today she was able to utter her first words, at least those I could understand, ‘I miss you’.

This has brought home her need for relief from the boredom of looking at a ceiling and ICU machinery all day long which is only interupted by the attention of the nurses,who continue to be excellent and our visits which represent only a fraction of her beleaguered day.

We have now set in motion a programme of visits from friends who we know will give Jennie the encouragement and support for the brave battle she is fighting against GBS. Next week should see the results of a recent Electromyogram (EMG) Nerve Conduction Test, need for a another IVIG treatment (unlikely in the short term), and sputum analysis for a course of antibiotics to clear her chest which is the main reason why she is still in intensive care.


July 2009
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