Rosie has been a resident at GOSH for 100 days now. We have had quite a few ups and downs in that time and this continues to be the case.
Rosie had circuit change number fourteen on Friday evening and silicon extensions were fitted to her canulas as there is no longer any tube left to clamp and cut. Thankfully unlike the last change where Rosie required adrenaline and the defib, she tolerated this change well.
We continue to battle with Rosie’s clotting, despite her being on a steroid, which is helping. Just last night her clotting went from in range at .43 to over range at .64, with an APTT of 122! This won’t mean anything to most of you, to us it means she is at risk of another bleed. So we wait anxiously, keep our eyes peeled for signs of a bleed and hope and pray that this doesn’t happen.
While mummy is nervous, Rosie is smiling and oblivious to our concerns. She is awake and alert, enjoying school, where the teacher comes and reads stories and plays games. The plan is for Rosie to spend more time in her chair, getting used to being handled again, which she currently hates, and using muscles that have been sleeping for the past three months. Ultimately, the aim is to keep her stable, whilst getting her as strong as possible in preparation for transplant.
The cardiac arrest alarm continues to go off, thankfully not as frequently recently. Mummy has made friends with other cardiac patient mummies. We give progress reports and share our daily concerns over a cuppa in the parent kitchen, and have done the same over a glass of wine at the end of the day too. Husbands back at home and back to work, mums helping each other through, it is a fantastic support.
Equally the staff, particularly the nurses and volunteers continue to be amazing. We have grown very close to some of them now, as have they to Rosie. Even the doctors get smiles and waves at ward round – if they are very lucky.
So life at GOSH continues for us. We continue to pray that Rosie’s second chance will come soon, that the call to say a donor has been found comes. In the meantime, we continue to make the most of every day. You only get one life, live it to the full, then consider donating your organs so others can do the same.