Recovery was going so well. Bloody viruses. We are back to surround sound coughing (Anouk and Isaac right now), and in response, the live-in bacteria camping in his lungs are throwing a mean and nasty party.
His lung function is down significantly, his oxygen sats low, his infection markers, high. Five days of fevers have at least broken now, which indicates he is over the virus but is left with the pseudomonas party to fight. He was to be admitted, upon his consultants advice, but he refused. A few years ago, hearing this news from others I would have been insistent (there is no choice! If the doctors recommend it, this is a must!) but eighteen years of experience, knowing his own body, and his own response to infection, we have to respect his choice. Of course, this means extreme vigilance at home (checking his O2 sats often) and IV antibiotics (just two weeks after the last course, which even for us, is a record I think). If anything changes, we rush him in. And to be fair, he has been stepping up well and doing his own IV’s.
As a parent, I can’t tell you how emotionally challenging this is. It being his choice only. But as a mum of a smart, risk informed and lovely kid; of course we want him home, we understand, and we have to respect his decision. For the first time ever, he told me that being on the ward depressed him. That hit hard. Frustrated? Yes, of course, always, but depressed? That has never been part of his lexicon. Listening to him coughing right now, I’m in tears. His poor lungs. His poor throat. His poor head. His poor muscles. His poor back. His poor tummy, which often rejects meals due to excessive coughing. It’s all just so shitty. But he’s right, the only thing he would have on the ward is access to immediate medical care and O2. Being at home he is happier, more rested, and free to make his own choices, even when limited to just the house.
We do have huge amounts of hope, but right now, his reality is just crappy. I can’t say anything about clinical trials at all now (NDA) but we do have near hope. For now, I’ll cling on to that, and Isaac’s amazing ability to see the best in every situation. I think I lost that somewhere down the line x x x
Puppy therapy
