dont give up hope grams

June 7, 2008 at 6:04 am

In July 2006 i was in the same position as your daughter – i was completely paralysed and on a ventilator. They put me in an induced coma for 5 days. Those days were the worst for my family as i can only imagine how helpless i looked. But they only had the information the doctors gave them, they didnt have the benfit of this forum and the support of others who have been through what you are going through now. I can honestly say that i knew the whole time that i would recover, it was just a matter of how long it would take. You have to stress to your granddaughter that people do recover from GBS, it may be a long slow process but the hardest part is to stay positive.

Looking back, at 1 week i had just come out of the coma, was on the vent and battling pneumonia. Just like your granddaughter. My eyes were shut and the only method of communication was moving my big toe once for no and twice for yes. Well it seemed like forever at the time but by week 7 i walked out of hospital completely on my own, which is really no time at all considering where i had come from.
By week 2 i was extubated and had a trachy inserted. They started weaning me off the vent by putting me on humidified oxygen for short periods of time which were gradually increased. I had physio twice a day to keep my muscles moving. I gained enough movement in my hand to hold a pen and was able to write messages to my family.
Week 3 they were going to change to a long term trachy that could be taken out and cleaned but i developed an infection so they had to leave the original one in a bit longer. By the time the infection healed i was breathing on my own anyway. Once my swallowing was strong enough they allowed me start on soft food.
Week 4. I was able to talk again for the first time in almost a month with the cuff down on the trachy. At the end of 4 weeks i was discharged from ICU. I had use of my arms and some movement in my legs but wasnt able to stand even with a hoist.
Week 5 The first day on the ward the nurses wanted to take me for a shower. I told them i had to be hoisted out of bed into a chair. They got a standing hoist. I told them it was no use we had tried that in ICU. They asked me to give it a go anyway and i stood for the first time in over a month. Each day i progressed a bit further until i could get from the bed to a walker by myself then i was zipping up and down the halls with a walker. If you had told me before hand that i would have been happy using a walker like an old person i wouldnt have believed you but i can honestly say at that stage if i didnt improve any more i would have been happy with my lot.
My infection cleared enough for the trachy to be removed and i was transferred back to my lcoal hospital for rehab.
Week 6 Started inpatient rehab barely able to walk more than a few meteres with a walker. Was expected to shower and dress myself (including shoes!) for rehab. By the end of week 7 i was walking obstacle courses, up and down hills etc and was allowed home.

Sorry, didnt mean to drag this out so long but wanted to let you know that things may seem dire now, god knows i was in the same position, but there is hope. I was back at work in 6 months and next month it will be my 2 year anniversary. We hope to see your grandaughter here in the not too distant future sharing her story!