The Faces of Guillain Barre 2017: Day 15- Kate

Monday, May 15, 2017 0 Comments

This is my daughter Kate's GBS Story.

Before GBS

Kate is 21 she was 20 when she had GBS, she has a little girl who is 3 years old. It all started late October 2016. Kate complained of back ache, a week later tingling fingers and toes, she came down with flu like symptoms. We were away at the time so I asked a good friend to take her to A&E as I knew something wasn't right! This was on Monday 31st October 2016.The doctor thought Kate had a viral infection and told her to come back on Friday 4th November if she felt no better. My friend kindly let her stay with her to keep an eye on her, as we were coming home the following day. By the time we got home her balance was going and she was walking like she had led in her legs, but in herself was fine.

Wednesday 2nd November she was no better the tingling had returned and her chest felt tight so again we went back to the hospital, this time they thought it could be an ear infection and gave her tablets. I  was helping her to walk out as she couldn't walk without help another nurse saw us and spoke to the nurse that we had just seen, She came after us and asked if we could come back and got a wheelchair for my daughter and asked us to wait whilst she made a phone call, she then handed us an appointment and asked us to come back in the morning to the Medical Assessment Unit and thank God we did.

Thursday 3rd November 2016 The consultant was excellent and knew right away what was up with Kate, he asked a Doctor from Neurology to come up from his clinic to see her and that was when they said to her they were nearly 99% sure she had GBS, They told her she would not be getting sent home and would probably be in hospital for quite a while but would get better. Even then it still hadn't dawned on either of us just how serious this was. An ambulance was organized and she was transferred to a hospital with an excellent Neurology department. Kate was wired up to monitors​ and given IVIG, which unfortunately didn't work. She got worse as she now was paralyzed all the way up to her face, it started to affect her swallow and breathing she also had a very fast heart rate 150 so on Saturday 5th November Kate was transferred to ICU on Monday 7th November Kate was put on a ventilator.

Kate had been so brave all the way through and on hearing this had a little tear but still put on a brave face. Kate slept a lot of the time as she was heavily sedated, we did take her daughter in as when Kate was a awake she would ask for her, her daughter took it in her stride, but it was truly heartbreaking. Unfortunately Kate got pneumonia so was really very poorly, she was also taking panic attacks, was hot and cold had no temperature gauge, the amount of cold tissues we went through to keep her cool was unreal. When she was told she would be getting ventilated we said to communicate she would blink once for yes and twice for no, this really helped and then we were given a gadget that a attached to the bed with a door bell on it and if Kate needed the nurse's attention she would knock the bell with her head which she could still move. It was one of the best things they could of give her as of a night the panic attacks were more frequent as there was no family member there.

Friday 16 November Kate had a tracheostomy as it would be a lot comfortable for her as she was now more awake.  The nurse's were wonderful and would wash her hair and smother her in lovely cream's. Turning her was so sore and she would silently scream (you will all know what I mean) and if I was there I would stop them. She was given another course of IVIG which definitely helped. Kate was sitting in a special chair or sometimes just the bed being put into a chair position helped. By now we were into December, she was starting to get little movement back which gave her some thing to hold onto, of course with that then came the pain especially her feet, she had to have wet cloths on them to help.

On the 18th December she had her first day out in the wheelchair to the cafeteria, she looked so fragile but I could see she was over the moon to be out and about. She had her first bath in over 2 months it was Christmas Eve and the nurses made a real fuss of her, as we all knew how hard this was going to be for Kate being in hospital and not being with her daughter seeing her open her presents!

She was now being weaned off the ventilator and was very close to having her trach taken out, the doctors gave her Thursday 29th December to aim for, so on 29th December the Trach came out, at last. Gradually all the other tubes came out and on the 31st December Kate was moved back to the ward and exact same bed she had started off in. Ventiltored for 53 days.
Back on the ward Kate went strength to strength and was transferred  Rehab.

The day, Kate was released 

When Kate was ill we would talk about going to New York, as thats what Kate wanted to do for  her 21st Birthday which was coming up February 7th I made a promise to take her once she was able. Kate came home on February 7th, her 21st birthday. Within a couple of weeks she didn't need her wheelchair or crutches. She is 99% back to normal health, and her daughter and us are so grateful to have her home with us.