Now the day is nigh I realise just how much I’ve been fighting against any surgeries!! It’s ALMOST a relief Rose will go for her Gastrostomy this Tuesday.
I was lucky enough to meet a young mum the other day who was here for a year with her beautiful, happy son. They left on his first birthday!
I had loads of questions for her as her son has the GFT I dread for Rose. One of my Qs was
was there anything she regrets?
and she immediately answered that she wished her son had had the ops a month sooner.
After our conversation I felt I’d been holding Rose back from going home for no good reason. Even so, this mum’s informal mentoring helped my headspace and understanding of the situation so much! The hospital should formalise this sort of mentoring!! In this situation you can really benefit from hearing the experiences of a mother who’s ahead of you on the path.
I feel so much more comfortable (tho still petrified of course) about Rose having her gastrostomy and even, maybe… a Fundoplication if it’s for the reason that a gastrostomy will likely cause severe reflux. If it’s for the reason that she’s already at risk of aspirating or laryngeal spasm associated with existing reflux I do not agree that she’s at risk. I do admit however that every specialist I have chosen to trust does not agree and a Fundo is the conservative approach and probably the most responsible decision to make for Rose overall.
Andrew and I will decide either way after speaking to Rose’s surgeon & paediatrician tomorrow.
Meredith (neonatologist from RHW) dropped by yesterday to check on Rose. I appreciate her interest so much. The fact she’s tracking Rose’s progress and takes the time to help me recognise her progress and developmental requirements is quite special. I’m pretty sure it’s not in her job description. She’s definitely emotionally invested in our journey and that gives me a feeling of security.
Meredith mentioned she thought we’d made a lot of right decisions for Rose in terms of when to wait and watch and when to interfere and I can’t tell you how reassuring it was to hear that from someone I respect and trust and believe understands Rose’s situation including where I’m coming from as a mother. I just could not be more grateful for her involvement.