Home from hospital

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 

Not so little now Remicoe ❤️ #germanshorthairedpointer 

Vivid reds and deep, deep greens

Sorry for the lack of updates, and thank you to those who have asked after our lovely boy. 

He has kicked bug butt with our super sonic IV arsenal once again, and is feeling much better. Only the damn sinuses trouble him more. He has no sense of smell at all again, and when I accidentally ask him for the third time in a day ‘is that puppy fart?’  he now side-eyes me in frustration. His surgery (his sixth one on his sinuses, or seventh? We’ve honestly lost count) is being scheduled now. His surgeon, the amazing Dr Sharma, is aware of his upcoming clinical trials and the need to have him as well as possible by then. He can’t join a trial within 30 days of IV antibiotics, so timing is everything, and his CF team are planning another course of IVs for before and after surgery to keep the bugs at bay. So far, so good. No counting of chickens just yet; we’ve waited many months for sinus surgery in the past, with the cripplingness of headaches escalating day by day; but the noises sounds good, and we’re hoping for a date pretty soon, all going well (COVID, flu and Nora Virus can fuckedy fuck off please). 

The clinical trials, on the other hand, are delayed. This knocked me for six for a while, especially as we only know of the delay through friends in the community - the clinical team have told us NOTHING. I’d give up emailing if I wasn’t such a lioness for my children. Right now, it looks like Spring 24. I’m mindful of the fact that there are confidentiality challenges, and no one wants to communicate the wrong thing to families waiting for this life line, but still, it hurts to be ignored by your own caregivers. 

Throw into the mix an anxious child starting secondary school disastrously, busy full time work, the onset of winter illnesses (we are now fully flu and COVID vaxxed up, and urge you to do the same - if not for you, then to help protect the vulnerable in society around you), I’m exhausted. We all are. 

But sunny side up that I am, I’m loving autumn. The scents, the colours (lush greens and vivid reds), the suddenly furry ponies, long walks with cold feet and then snuggling up in front of the fire with a dog on your feet? My kinda heaven. Pup Remy is a joy, and Isaac is a doting owner - love like that can’t help but make you smile. 

Once again, I’m finding the news incredibly upsetting, difficult to watch and anxiety provoking. But I do. I think that’s important - to understand, to find your own impartial view of the truth, and then to support in whatever way you can. 

Love, love, love x