Month 5 has been and gone. We got our discharge (Wednesday 9th September) which makes for a fantastic month, but we’ve also experienced the worst health to date too.
We had our final escape from the hospital over the August bank holiday when thirteen of us, plus Bradley, went for a pub lunch. Finding a wheelchair accessible pub with room for thirteen, that took dogs and did food on a bank holiday is just an entry in to the world of research that we are entering.
Unfortunately José had a swollen tongue that morning which slowed down his eating and then continued to get worse. With no dental department at the hospital we resorted to (blurry) photographs texted to a cousin and Corsodyl mouthwash. By the date of discharge the swollen tongue was joined by mouth ulcers and speaking / swallowing was limited. Therefore our first day at home was spent getting to a wheelchair accessible dentist, resulting in a proposed referral to the dental department of a local hospital.
The conditioned worsened over the first week until speaking and eating were all but impossible. By the second weekend we had to return to overnight tube feeds directly in to the stomach. The welcome addition of a NutriBullet into our lives has meant we have maintained some consumption of fresh fruit and vegetables. After three days of not eating we eventually secured an emergency doctor’s appointment – not easy when all such appointments are in the morning and José’s morning routine prevents him leaving the house before 12. José was prescribed anti-viral drugs which have improved but not cured the problem.
With all the stress of discharge and moving from the sterile temperature controlled world of hospitals, to the ‘real’ world, we should be grateful that José has not had worse health; but it did feel pretty bad at times.
Since coming home we have had three PAs (Personal Assistants) who have done about 10 days each, with a 24 hour handover in between. The PAs; Rajmond, Daniel and Theresa; have been on-call 24 hours a day and work solidly with José (getting up, eating, going to bed) for about ten hours a day. Having someone else living in the house, and them having a role to care for José, takes some getting to use to, but we are adjusting and finding a rhythm to our lives. We have tried to go out most days; at a minimum José and his PA will take Bradley for a run on the meadow whilst I am at work.
Our more exciting days out have included on Day 2 our first trip to the local pub (we had to draft in the support of our neighbour’s 19-year old son to push up the hill) to watch the football. On Day 3 catching the bus to take Bradley for a swim at a near-ish park (also involved a pub). And a trip to Greenwich PictureHouse – where we had an almost private showing of Bill Bryson’s Walk In The Woods. It turns out Shooters HILL is well named, even the bits that were previously flat have suddenly become mountainous; but with perseverance and sturdy shoes, José, Bradley and I have managed some walks in the woods and to local cafés.
We’re fortunate that the weather has been relatively good (only one day have we had to use a plastic backed blanket whilst we ran for the bus) and so expeditions have been possible. When the weather turns getting out will be more complicated, but we hope to have a suitable car very soon which will make things easier. At home José has use of the complete ground floor whilst in his manual wheelchair, and with a masterful adaptation he can now get in the garden too. It could be a lot worse.
Now José is home I will send updates only when something noteworthy has happened, otherwise it will be much of the same. But if you would like to catch-up we are increasingly available by phone and in person, just let us know.
Finally, another thank you to everyone who has helped us emotionally and physically. It’s been a tough few months but we are pleased to be together again.
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