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Movement. A slight finger wiggle. Less reliance on the ventilator. Less drugs, greater alertness. Time to move out of the General ICU to the Neurology High Dependency Unit.
Frustration. Frustrating waiting for Jennie to be transferred to the Unit. It was promised for 10.30 but nothing happened until 4.00pm.
Frustration of waiting for a few hours? This is nothing compared to the frustration that Jennie must be suffering now that she is fully with it. Her mind is alert and active yet she is unable to turn or move without assistance and the ventilator pipes cause constant aggravation. Her inability to communicate is reflected in her facial expression, the rolling of her eyes and the odd tear. So sad to see her like this.
We’d expected the tracheotomy to be performed yesterday. Get those tubes out of her mouth and throat. But the decision has been delayed. Good, because she is taking control of her breathing and may not need assisted ventilation for much longer. But bad because they must be driving her mad. How would you like a pipe down your windpipe? The decision on the trachie and removal of these pipes can’t come soon enough.
Intensive Care Unit means tubes and pipes and wires and bleeps and alarms. It looks intensive, how must it feel for Jennie? Let’s start with her nose. Feeding tubes running to her stomach up through her nostrils. In her mouth is an enormous fat pipe, her mechanical windpipe that runs down to her lungs. Down her throat down where nothing except air is supposed to pass (imagine being in a constant state of ‘going down the wrong way’). Then there’s are the probes, going under her sheets for who knows what. The arms have tubes delivering intravenous fluids, pain relief, and another cocktail of drugs. And we mustn’t forget the catheter tube.
A week ago the tubes were frightening. Any change in a bleep or alarm brought panic. But now it is a way of life, it is normal. Big day today apparently, a decision on what to do with the mother of tube; the ventilator, that mechanical windpipe. If she really is breathing by herself now it’ll soon be on the way out. We can hope and pray.
Today we had the good news that the IVIG was beginning to take affect inasmuch as Jennie can now move a little finger and be less reliant on the ventilator. She is showing signs of constant discomfort with all the tubes down her throat and being fed through her nose. This means that the tracheotomy planned for today has been postponed in the hope that by the end of the week she will be able to breathe on her own but possibly still need some mechanical assistance.
I can now hold her hand properly as many of the interfering tubes and lines have been removed. She is also a little more with it and asked to see photos of our grandchildren through the alphabet abacus.
She may now be returned to the Neurological Neurosciences High Dependency Unit where she started. From what we have read its best not to pin too much hope on these developments but the IVIG, Jennie’s sheer grit and determination her co-operation with the medical staff and everyones good wishes and prayers, all seem to moving her condition in a positive direction.
Following confirmation from a lumbar puncture that beyond any doubt Jennie is suffering from GBS, she has now been moved from the Neurological High Dependency Unit to the General Intensive Care Unit who have the expertise to monitor the progression of the illness. Already they have put her on an air bed to negate the possibility of bed sores and make her more comfortable. The nurses are fantastic as they monitor all Jennies readings constantly, and take swift action say when her blood pressure falls dangerously low.
We are desperately trying to find out exactly when Jennie will respond to the intravenous immunoglobulin IVIG treatment. The last dose happened last night. IVIG is a cocktail of ‘good antibodies’ sent in to fight off the ‘bad antibodies’ which are attacking the nerves. No one has an answer. It will take some time they say. Just as well I have bought a season ticket for the Hospital Car Park.
The mind is perfect. Guillain Barre doesn’t touch the mind. It traps the active mind in a broken body. Imagine being buried alive in a coffin and that can’t be far off the mark. With the ventilator tube in the mouth speech is impossible. Movement is impossible. communication is impossible.
So we improvise. A childrens alphabet board. I point at a row, is the first letter in there? No. Second Row, two blinks of the eyes. Yes. This letter? One blink. No. this letter? Yes. H. Sure? Yes. H. So the next letter must be a vowel. A,E,I, O blink blink. O. OK, getting there. H.O.L. “hold”… Hold my Hands. We’d forgotten the importance of the physical attention and love.
It was a week ago today that Jennie first complained of tingly fingers. The consultant at the first hospital said when she told him of her tingly fingers said “my dear, that is the least of my concerns at the moment”. Even the best get it wrong.
“Pace yourselves” they told us at the hospital. We can’t be there bedside every moment of the day. But today was a good day as far as GBS goes. Jennie moved her fingers. Ever so slightly but she moved them. A false hope? Let’s wait and see.
The thing about GBS is the unknown and the uncertainty. The consultant sits down with us, I’m desperate for a story on The GBS Journey. But there is none. There is no well trodden path, everyone is different. Positive story: the woman who was discharged in ten days. Negative story: the woman who was on the Ventilator for twleve months. The worst case story: death. Stop. Be positive.
The phone rings after midnight. People aren’t meant to ring after midnight. When the only people who will phone after midnight are the local hospital where Jennie is in, it can only mean one thing. Bad news. She is having difficulty in breathing, they are rushing her to the General Hospital in town. That was Tuesday night. Tonight she is on life support.
A cough, a sneeze. Feeling rough but you don’t think about it. A common cold. It passes.
It’s a war out there. Germs and diseases, viruses and bacteria. but the body is strong. It has evolved. It has built defence mechanisms. It’s got an army of anti-bodies. Anti-bodies to fight off the the common cold. That’s why it passed.
But what happens when the army looses control? What happens when there is a coup? What happens when the anti-bodies forget to stop fighting and turn on the body itself? What happens…
Welcome to Guillain Barre Syndrome.
We’d never heard of it before either. Who has? It affects a handful of people -1500 in the UK- each year. We are getting to know a lot about it now. Saturday everything was fine. A normal existence. On Sunday Jennie had a tingling feeling in her fingers. Monday morning she work up and had no movement in her left arm. Call NHS direct, message go to hospital. Local Hospital. Suspected stroke. Tuesday it is getting worse, Right arm gone now, MRI scan comes- result clear. No stroke. The doctors are at a loss.
The phone rings at midnight, she’s leaving the local hospital, bound for ICU. Intensive Care Unit. Those three letters are going to mean a lot to us now.
Wednesday. We have a diagnosis, Guillain Barre Syndrome, GBS for short. And hell begins.
This is new territory for us. Jennie, wife, mother, grandmother is now on a ventilator. Her anti-bodies are fighting at her muscles. She is effectively paralyzed and cannot breathe unaided. She is trapped in a body that isn’t working. Her mind is active, she can currently communicate only using her eyes and basic facial expressions. She’s had immunoglobulin – clean blood to replace the nasty blood. It is now a waiting game.
And thus the blog starts. By all accounts it is a long haul; there’s support out there, but this is our story of making sense of it.