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

Wednesday, March 30, 2011

Another hyphema

Joel has been sick for the past 2 weeks, nothing serious, just a cold. Runny nose. viral rash. His eye always shuts when he is sick, he usually rubs snot into it and it gets infected so I just kept up with the Maxidex drops.

On Monday he opened it more than he had done in a while and it looked fine. On Tuesday night it didn't. I noticed the anterior chamber had filled up with bright red blood. His eye looked terrible. Wednesday morning, 10am, we went back to PMH emergency. I think they do a brilliant job, they had so many kids to deal with, so many parents to deal with, and they do it all happily and relatively efficiently. It took just over two hours to get through the emergency queue. Obviously an eye filled with blood isn't their biggest priority, there was one little boy there who looked like he'd been rolling around in glass, cuts all over his body and face, he'd knocked his front teeth out. Joel was happy enough, playing and drinking and eating.

We went into the ward and the nurse weighed him (12kgs), then asked what was wrong with his eye. Now this is what gets me. We go to PMH all the time. His files are there, with everything they need to know about his surgeries, what's gone on with his eye, how he was born. Yet I had to recount the whole story from his 4 week diagnosis to a nurse who, I knew, would then go and get a doctor, and I would have to explain the whole thing again. I tried to do the abridged version ("he was born blind in that eye, he's had 3 operations, now the eye is bleeding") BAH BOW, not enough information. Back to the start. Finally she finishes taking his notes and we wait for the doctor. Another hour, the doctor comes. "what's wrong with his eye?" Again I try the shortened version but it's not enough, so again we go through his operations, what is PHPV, can he see, etc etc. Doctor looks in his eye, yep it's bleeding. I ask why. He doesn't know. Goes to get a Peadiatrician. Another hour or so. Pead comes, recount the story. She looks in his eye. Yep, it's bleeding. Ah huh. I ask why, she doesn't know, goes off to call "someone". While she's gone, I ring Dr Lam's office. We have an appointment already booked for the 7th April, I ask if I can get in any earlier. Receptionist says yes, can do this Friday at 10. Now I just want to go home. The Pead comes back and says there's no eye registrar rostered on today. Nor is there an Opthamologist. Basically there's noone here who knows anything about eyes. Oh joy of joys. She tells me she's tried to call the Outpatients Opthamology but no one is answering, someone will have to call me tomorrow with another appointment time. I ask if I'll be able to see Dr Lam then, she says it will be his clinic but I might not be able to see him. I tell her I have an appointment booked with him for this Friday now, I'll just leave it at that. We are free to go. I pack up my tired little man and we leave. I think this was about 3pm.

So that was our whole day yesterday. Joel was up a lot last night, I don't know if it's his eye hurting, his ear, teeth, if he was over tired from not sleeping yesterday (he had a nap in the car on the way to hospital but that was it).

I honestly don't know what they can do for him. He isn't having any more operations, they won't do another drainage on that eye to remove the blood (which this morning has turned a murky brown/yellow colour), I doubt there is a drop in the world that can remove the blood. I just don't know, again, what the next step will be.

I was so excited when he opened his eye properly on Monday, so happy for him that finally now he was over the worst of the infections that he's had since Christmas and maybe we'd get the go ahead at our next appointment to get his shell made. I know that's not going to happen, he won't look "normal" for a while, I won't be able to see what he looks like with two eyes that are the same. His eye won't get that extra chance to grow, like other kids who have had their shells for a year already. I am getting really frustrated, REALLY frustrated, that nothing is going his way. It's one thing after another. I just wish we could get on top of it, that we could help him but all we seem to do is fight infections.

I will update again once I've seen the surgeon tomorrow. I've tried to take a photo of the eye but can't get him to sit still, just imagine an eye that has no iris or pupil because it's filled with browny yellow blood, with streaks of bright red. That pretty much sums it up.

Please pray for him, keep him in your thoughts and pray that blood goes away, that he's not in any pain. He is such a brave little boy, always being poked and prodded and having lights in his face. I know he's not ever going to see out of that eye but he at least deserves to have the chance to look normal.

Thursday, March 3, 2011

Another blog