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

Thursday, July 15, 2010

Next operation on Monday

So we're back from the hospital and booked in for another operation on Monday at 3.

I feel ok about it. I knew it was coming. The blood in his eye was black on Monday and Tuesday, yesterday it went red so he had a re-bleed. This was most likely caused by the TPA (http://en.wikipedia.org/wiki/Tissue_plasminogen_activator) which is a protein they put into his eye to stop the scar tissue coming back but the unfortuante side effect is that it also stops the blood from clotting, so his eye has just kept bleeding. He has what is called anterior chamber hyphema (http://en.wikipedia.org/wiki/Hyphema). Unlike the picture on wikipedia, his whole eye ball is covered in blood. I just want this op over and done with. I just want my normal life back, even if it does involve patching and contact lenses. His eye hasn't been seeing properly for weeks, all the good work with the patching just seems like it wasn't worth it, even though I know it was the right thing at the time. Far out. My poor little man, he can't catch a break.

His eye pressure was 7 today, which is good. On Monday it was 19. Anything less than 20 is normal, so he just scraped in before so I am really glad it's gone down. He's happy today, smiling and chatting up the nurses. He made a little friend at PMH today, a boy called Ryan who is about 7. Ryan kept saying how cute he was with his 3 teeth. He's cut the two bottom ones and a top right inscisor, it's so cute because he grinds his teeth but because they're not directly above and below each other he has to move his jaw all the way over, it's the cutest thing. I wonder when the two top ones will come through. It'd be good if they came through when he was under his GA on Monday haha. Save him the hassle of teething.

So, it will be another few days without Annalise at home with me. I hope he recovers quicker this time. It's a fairly straight forward procedure, they make a hole in the eye and flush the blood out. There's not much they can do to stop it bleeding again, so all we can do is keep praying the bleeding stops, his pressure stays low, his retina stays attached and he recovers quickly.


  1. Hugs, hugs and mooooooore hugs xxxx

  2. sending you all lots of strength and love. ♥♥