12/5/17 – Day 150
I started writing this update 4 days ago. It’s going to be a bit mammoth now so I’m going to split it in two 😕 Have to start though by saying a huge thank you for all of the lovely messages in response to our news about home, we so so appreciate the amazing support we’ve had over the last 5 months 💛 I don’t know where I am update wise. Eyes first I think. So last Thursday Arlo had a routine ROP screening (retinopathy of prematurity; when the retinal blood vessels do not develop normally in babies that are born prematurely. It can cause a serious loss of vision if it isn’t diagnosed and treated early). ROP is diagnosed in 4 stages. Stage 1 & 2 don’t usually require treatment but stage 3 & 4 usually do, and it has to be done quickly. The optometrist diagnosed Arlo as having stage 3 ROP and after that things moved very quickly. We were in an ambulance and on our way to BCH before we knew it.
He was admitted to the Neonatal Sugical Ward and prepped for surgery. He was nil by mouth from 3am and had 3 sets of drops put in ready for the surgery. However when the Eye Guy (not his official job title) came to get him he decided to have one last look, and based on what he saw he asked a colleague to come and have a look too. They both agreed it’s definitely stage 3 however at this point, with Arlo being practically geriatric by Neonatal standards, they didn’t think it was actually going to progress any further and therefore decided surgery wouldn’t be necessary at this stage. I’m not going to pretend I have a thorough knowledge of this, eyes freak me out, but my understanding is; that at the moment just his peripheral vision is affected and the surgery stops the damage going further, but it doesn’t restore the vision that’s already been affected so IF things aren’t going to progress further by themselves then surgery wouldn’t have any particular benefit really.
So almost exactly 24 hours later we were back in Telford as though nothing had happened! He was due his next examination today but the Eye Guy who does the Telford clinic is away this week so on Wednesday Arlo had yet another ambulance ride to hospital number 5, Stoke.
This was the first time I’ve stayed in the room for a ROP screening and I wouldn’t be in a hurry to repeat the experience. It’s such an important check up for premature babies but it’s a horrible procedure. I understand why he’s always exhausted and a bit unwell afterwards now, poor thing. His eyes will need to be examined weekly for the foreseeable and he may still need surgery but hopefully not.
Anyway, onto more interesting things… will post update number 2 shortly, all about ‘The H word!’