24/07/2026
Just incase anyone is unaware that Sara is still not in office to answer emails, send estimates/invoices or do TentBox appointments. Here's an update on our wee boy.
Week 8 - I feel like we've not done an update in a good while.
Charlie had a 3rd failed attempt at leaving the hospital last week, he sneezed one morning and then had a bit of a scary episode of bleeding which was a bit serious than previous bleeds. He was almost rushed to PICU but he seemed to stabilise himself, there was alot of oxygen needed with something blocking air entry into his left lung. Throughout the coming days he seemed to be getting better, he got a blood transfusion and hes off oxygen. We think it was either inhaled blood or a plastic lung cast that was blocking his left lung, however that seems to have shifted over the weekend.
This Wednesday he had a special scan procedure called lymphangiography, this is simply a sedated MRI with dye injected into lymph nodes to check where the lymphatic fluid goes. Charlie is actually very special and is the first child to have this done in Glasgow Childrens Hospital, usually children would have to be transfered to more specialised hospitals like the Evelina in London.
We've also had some serious conversations with different members of Charlies medical team. The refferal for heart transplant assessment was sent off last week, we are still waiting to hear back. But also the team are reaching out to America, the Childrens Hospital in Philadelphia, to see if they have any treatment ideas or advice they can share. I'm not going to lie, Charlie is kinda stuck in a bad situation just now, although hes still very much active and looking healthy, there is alot of complications going on. So although our main aim is to get Charlie home ASAP, he is currently not allowed to leave as hes deemed too high risk.
So thats currently how the summer holidays are going 🤦🏽♀️ Hes a bit gutted hes going to miss Belladrum Tartan Heart Festival
