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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.

The Medics have decided that Jennie’s progress is not at the rate they are expecting especially as her left arm, the first target for the GBS is showing little sign of movement.

The decision has now been taken for a second dose of IVIG treatment in the hope that this will finally drive out any remaining rogue antibodies.  This will take place over the next 5 days.  (If the web can be believed this is costing $10k because it is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together).

Lets hope it works this time.

The throat Doctor (Speech Therapist) arrived today and explained to Jennie that the swallow test involved a spoonful of gooseberry jam to which had been added a coating of sunflower seeds.

Unfortunately and not very surprisingly, Jennie was unable to swallow this concoction fast enough to satisfy the expert. This is all very frustrating and it is likely that Jennie will now have to undergo a procedure to relocate the feeding tube through her nose to directly into her stomach.

She will ask for unadulterated raspberry jam next time!

A small milestone today when the physios strapped Jennie to a hydraulic plinth which then moved her to an upright position.
To see the world standing on her own 2 feet brought a big smile to her face.
The physios then got to work on her arms and calves and neck and head. Jennie is now appreciating the mantra of ‘no pain, no gain’ . Blood pressure and oxygen readings all good and no dizziness- a small milestone indeed.

In the beginning we were in a world of unknown.  There were big fears, serious conversations with doctors; we were crossing the chasm of uncertainty.  We’re now the other side and Jennie has come to live with the monotonous landscape of GBS.  Ups and downs.  Some days good, some days bad.

Yesterday was particularly bad. She had an upset stomach giving her great discomfort and preventing any physical therapy.  This is both a break from the bed, but more importantly keeps inactive muscles healthy and decrease the risks of developing other problems due to immobility.

But that was yesterday.  The milkshake diet fed through her nose was changed and the discomfort passed.  Physio was possible again.

Jennie has now accepted that constant physio treatment is extremely important in order to increase the chance of a full recovery. Today was one such day with a rigorous workout in the morning (well it was for Jennie!) followed by a visit from her good friend Margaret who Jennie was delighted to see. But there was more to it than that.

This visit was different.  For a change Jennie was not flat on her back in bed.  She was not being looked down upon as a sick patient, gazing up at her visitor. She was in a wheelchair, sitting up, eye contact on the same level.  She was bright and chatty, the Jennie we all know and love. Let there be many more days like this. Shortly after Margaret left she asked to return to bed and promptly fell asleep. Totally exhausted.

Jennie’s condition has now stabilised and she has resigned herself to a life of inactivity, nurse dependency, interrupted sleep and occasional pain and discomfort especially in her mouth.

Her voice is improving but is still not strong enough for the speech/ throat therapist to allow her to swallow fluids. She looks well despite all this and whilst the paralysis shows little sign of discernible improvement, the Doctors believe nature has started on the repair of the mylene sheath on her nerves.  As always this is followed by the reminder that recovery will take time. They believe her inability to get a good nights sleep is a major factor here, but she is still complaining about bad dreams and hallucinations. Our role as visitors is to give her maximum encouragement to eliminate any negative thoughts and anxious state of mind.

Having said all this, lots of physio, a high energy feed (still through the tube in her nose) and exceptional nursing are giving her hope and we look forward to lots of small milsestones on the way to full recovery from this awful condition.

Ever had a curry and woken up in the early hours of the morning with a dry mouth and a desperate thirst?  Hold that thought.  Think of eating salted peanuts and crisps (they sell them in pubs for a reason, they bring on the thirst), wait a while and now think of the craving you have for a drink; focus on the dryness of your mouth.  Now add a mouthful of cheese cracker biscuits to really dry it out.  Wait a while, then hold your nose so you can only breathe through your mouth.  It’s getting uncomfortably dry now isn’t it.  Now put a fan in front of your open mouth.  The tongue is getting furry.  The mouth feels like a carpet. It’s not really very nice is it…

GBS destroys the musscles that make you swallow.  Without the ability to swallow it is nil by mouth.  Nothing, nada, not a thing.  For two months.  The mouth becomes an arid desert, deserate for water, desperate to swallow.  There is nothing nice about GBS.

The Medics are trying to wean Jennie off painkillers after a steady dose over the past 6 weeks.

She mentioned to some friends who were visiting the other day that she had a severe pain in her leg which was also very tender.

A Doctor was called and he recommended a scan to eliminate the possibility of DVT. After 24 hours of worry she got the all clear and is now back on paracetamol given through her feeding tube.

We are so grateful to Duncan and Sue for all the help they gave Jennie by her bedside and feedback later.


August 2009
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