Isaac is still on O2, but no longer with the help with his breathing (Opti-flow). If he gets too tired, he may have to go back on it, but so far, his sats have mostly been stable, and he is feeling comfortable. All going well, we can go back to the ward soon! He also walked another 15 yards on portable O2, and sat in a chair for about an hour. His appetite has been almost non-existent for days now, but last night he had a burger, which is fab. Today he hasn't had much at all, but asked for a red apple (very unusual for him... but you want what you want). He is still sick most days, mostly from the medicines he needs to have to protect his liver from the IV drugs which tastes like rotten egg, or coughing so much. After very little sleep for the first five days in hospital, he is finally snooze full. 12 hours last night, and more today, only waking for coughing. I think it's all finally catching up with him, it's so good to see him more rested. Just watching his chest, you can see how hard his body is working to breathe. Broken ribs are not uncommon when you have been coughing like he has been, so we are fortunate he is OK so far, as this would change the kind of physio he can have. Our main priority is physio, helping to shift his chest full of mucous. It is working (think cup fulls a day...). If and when we do get back to the ward, the plan for the coming days will be to continue with the IVs, steroids, nebulisers and physio. He will attempt lung function tomorrow and when he is feeling better, have a CT scan to assess the damage this exacerbation has had on his lung health, which will determine a longer term plan.
Today Isaac has been very quiet. I try to read, write this blog, and listen to music throughout the day, but like him, cannot concentrate for long. We are feeling bruised and beaten right now from everything that has happened so quickly.
I have come home tonight, and found a gift from my very best friends from work, bags full of survival kit (books, mags, food, drink, face masks...!) so amazingly thoughtful. Thank you Gem and Jin. Thank you to our parents and family too, who have been looking after our girly ones, Jo for spoiling them and keeping them busy making things, Lemon, Graham and Floz for taking them out, and for all the lovely messages of support. If I haven't replied, it's not because it isn't very much appreciated. Big love.
I have seen Isaac in pain many times (...he has had PICC lines sewn into his skin with no anaesthetic as a baby) but seeing him so scared, gasping, unable to breathe is much more haunting. Squeeze your little ones extra tight tonight x x x
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