Outside your new window on the third floor, I saw a pair of European Magpies building a nest down in the courtyard. I wish there was a way to get your head high enough to see them. It’s beautiful sign in any case.
We’ve had such a huge day today. So filled with new impressions, so many things to explain, different sounds and much more light. You traveled in a moving vehicle for the first time in five months. The sounds from the road were overwhelming and I regretted forgetting to leave you the noise cancelling earplugs.
I’ve had some calls with your old clinic through the day, as they forgot to pack the chin strap for your NIV mask, so I need to pick it up tomorrow. I’ve asked them if we could borrow an extension lead for your alarm but no can do. They don’t trust that we will return it, so you will have to sleep with your bed turned to the wall till I can buy the right cable.
There’s a kitchen here where I can warm your food myself. The pillows are softer to your dislike but the softer paper towels are to your approval. The nurses all wear circular plastic aprons, not that they round, but that they are sorted separately after use to be melted down and remade. We’ve met your new speech therapist who grew up in France and has a playful spirit like you. I think the two of you will have a great time together. There’s a lot more specialists here as it’s connected to the hospital, so they will check your mouth and teeth, your muscle tension issues, and your stoma that still has not closed itself.
It’s a lot of work for you right now to explain to every new person how you need for them to move you, the things that do and don’t work, how to position you comfortably in bed. It will take time to settle in, time for them to get to know your body. One stunning difference here is that you no longer have screens behind you, no more cables attached to your body, no more constant observation of your pulse and blood oxygen saturation. Just a check up of your vitals each morning and evening. The only machines now are for periodic inhalations, cough assistance, and the NIV mask for sleeping. We have taken clear step away from ICU and intensive adjacent care, you are now quite firmly in rehab.
The nurses have been asking me many questions about the machines, the coughing machine and the NIV mask, as each model is a bit different. Unfortunately I know nothing about them, that knowledge has not been shared with me, which is entirely ridiculous, considering that in just eight or so weeks when you return home, I will be responsible for them and for supporting a whole team of staff to use them. At least in this place there is a spirit of inclusion. I trust that here they will be willing to teach me all I need to know in caring for you at home.
Thank you to everyone who has donated to our Build a House of Dreams for Patrick gofundme, you have absolutely blown us away with an ocean of generosity. All donations, both on and offline have now been added to the gofundme page, pooling an astonishing 409 383 SEK. You are supporting us beyond our wildest dreams, while making them a reality. Thanks to all of you, we can continue building our home and centre for A R T I S T S in R E S O N A N C E this spring, now with the help of a builder. This gives us great hope.
In case you are new to this diary, Letter to my Love with your Brain on Fire can be read as a prelude.
Your comments, likes and shares are so warmly appreciated, even if it takes a while to respond… I promise we will eventually!
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