A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Tuesday, July 13, 2010

8 days after surgery

He seems completely back to normal except for this unsettled-ness. Now I am worrying myself that he has glaucoma. He still doesn't really like being on his back but only for the night sleep and I don't know if that's because he is in pain or he's used to sleeping upright on me because we've been doing that for days.

It feels like this PHPV thing is a rollercoaster. I go along thinking everything is great, then we have an appointment and he needs surgery. He has that, I go along thinking he's going to be able to see, we have an appointment and it's more bad news. It's up and down and up and down.

I feel like I shouldn't HAVE TO put drops in his eyes every hour. Why can't I just have a normal little family who just goes along having their problems but not stopping every hour to put drops in his eyes? I'll just get started on something then it's like "oh have to stop now to put drops in". Put the drops in and start it again then it's time to put him to bed, but before we do - more drops. Every time he wakes up at night I am putting these damn drops in. He is sick of it and so am I. I really hope he hasn't got glaucoma, that is managed by drops in his eyes all day. I know I will handle it if that's the case I just don't want another set of bloody drops.

In certain light his eye looks black, in others it's red. Most of the time I can't see the pupil. He has it closed a lot too and when it's open it's usually drifting off to the left while the right eye looks straight ahead. I just want it to clear so it doesn't look so "dead". What if it never goes back to how it was? I look at photos of him 2 weeks ago and he had two beautiful eyes, even though one couldn't see. What if it never goes back like that? I couldn't live with myself knowing I agreed to the surgery and it did that to his eye.


  1. Awww Trace you are doing amazing with him! No matter what happens you have made the very best decisions for him. I can understand the drops every hour driving your crazy, you must feel like every time you start to do something its drops time again!!xx

  2. Yep, that's pretty much my day.

    Thanks Mel xx