We are home after a quick admission, but with plans to go back in this week for surgery and post-op care. Isaac is on much needed IV antibiotics once more, too soon after the last lot, but the surgery should offer a reprieve from this constant cycle of sinus to lung infection.
This week has been full of tears, joy, hope, disappointment, frustration, bureaucracy, more tears and head banging. Working with two hospitals (one for his surgery, and the other for his CF care) is incredibly difficult for reasons we can’t always fathom. Isaac’s hatred of staying in (he misses home, autonomy, privacy, sleep, and most of all now - his puppy Remy) resulted in painful conversations about the need for him to prioritise his health. I’ve cried myself a river. The next few weeks will be a back and forth to the ward, but for now, he has convinced them that he is better off doing home IVs. Seeing his smile and an ecstatic Remy on his return - made this all feel right.
While we were in, we had big news on the gene therapy clinical trials. We cannot share information on the trials on s-media, so I’ll be saying very little for now, other than that it’s looking very hopeful to start in the next months. I will share more when we can. The trials can not come soon enough for us, this constant cycle of lung infection and frequent IVs stinks of a decline that we cannot accept.
Strange, surreal times. For now, Isaac is exhausted but happy, and we will rest and restore x
Autumnal view of Isaac’s room from the car park
