As 2020 drew to a close, we looked forward to 2021 with a sense of optimism. Vaccines were starting to be delivered and there was hope in the world. Then we were brought back down to earth with a large dose of reality.
Christmeas was spent on the truck and we managed to compensate for having no chimney for Santa to deliver the presents for James. Xmas lunch was cooked and a good time was had by all. James returned to the care home boxing day only to receive a phone call the next day to say that he was on his way to the hospital with a chest infection.
New Year was spent sleeping on the floor next to his hospital bed. He was discharged after a week and we started to plan our trip for the coming year. Then at he end of January, James was rushed into hospital having suffered a cardiac arrest. We did not see that coming.
What the followed can only be described as a parents worse nightmare. We had 5 end of life phone calls. However, in true James style, he refused to give in to all his ailments and battled on. He was transferred to Papworth Hospital in Cambridge where after the last end of life phone call we were left with a stark choice. Full trachestomy with night time ventilator or James would not get to spend very much longer with us.
I will let James carry on from here…………
I now have a full trachestomy and get ventilated overnight. This has given me a new lease of life. I feel so much better now that I am able to breathe properly. I spent 3 months on RSSC ward in Papworth (3 North East) and I must say that the nursing staff were brilliant. I looked forward to each day to see which staff were looking after me so that I could flutter the eyelids, give them one of my big smiles and get away with everything. I could name them all but I’m sure that I would miss one out and I wouldn’t want to cause offence. They were all so good to me and now that I have moved to a different care home, I miss them terribly but have put up the butterfiles that were made for me in my new room. Thanks Barbara.
I’m hoping that Dad will be able to take the truck somewhere close to Papworth so that we can get together and I can regale them with my stories. Of course, I obviously want to be fussed over as well. I cannot thank them enough for the care that they gave me and they will always remain a very big part of me.
As James has said, he now has to be ventilated at night. How this will effect our plans to wander the world, only time will tell. This was one of main reasons that the truck was built the way that it was and we have enough power to cope with the extra electrical equipment that James now has off grid.
What we are not going to do is abandon the plans to go travelling. They may have to take a different path as James has to attend hospital once a month for a new tube in his trachestomy so any plans will have to take that into account.
The last 6 months have been difficult but the resilience shown by James who always dealt with what was happening to him with a smile and cheeky laugh is an inspiration and only proves that if you are determined then you can still fulfil your dreams.