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, July 21, 2010

Check up

We've just come from the hospital and didn't get to see Dr Lam again, we just saw Andrea. I just can't stop crying AGAIN. Why can't we just see Dr Lam? He did the surgery, we always end up seeing Andrea or Josh and never Dr Lam. Isn't my little boy important enough? We've got private insurance, we can afford to pay to see him, why can't we see him? Andrea told me that there's blood at the back of Joel's eye now, there's hardly any red reflex, he'll never be able to see, they'll either remove his eye or put the shell over the top. They're not going to operate to remove the blood at the back. I just called Dr Lam's private rooms to get in to see him and the earliest I can get in is September 7th. I feel so unbelievable helpless. I just want someone who knows what they are doing, what they are talking about. I feel like no one there cares about my baby. I am sick of crying over this, I am sick of feeling frustrated. She couldn't get the pressure on the first go so she just left it. There is this whole air of "why bother about Joel" when we are there. It's like they've given up on him.

My baby.

I feel so useless and hopeless and alone. I just want to be able to help him, to get him the best care and I can't. I keep crying and that's not doing anything.

We are going back next Thursday, well that's what Andrea said. I am going to ring and change it. I wish I was more assertive when I was there. I wish I would have just sat there and waited until Dr Lam got there. We've been there 3 times a week for the past 3 weeks. We only see Dr Lam if Andrea thinks there's a reason to, and yes I KNOW HE IS BUSY but FFS. Seriously.

I would give absolutely anything, anything, for my baby to see. For his eye to grow and heal and there is just absolutely nothing I can do. All I can do is put these friggin drops in every hour and just hope for the best. It's just not enough. I want him healed now, I don't want him to keep going through this. His eye hurts him, he can't see out of it, he's had THREE OPERATIONS AND HE IS SIX MONTHS OLD.

I am getting closer and closer to breaking point, I can feel it. I am so angry, sad, frustrated, disappointed, guilty, tired. Crying as I'm typing again. Why did we even touch his eye in the first place. Why didn't we just leave it. We've made it worse, we should have just left it. I don't know why I thought we would be different. I don't know why I thought Joel would get good vision with a contact lens. He's got nothing except blood behind his eye and we did that by putting him through 3 operations. He can't see out of it, it' looks horrible, it's been butchered. I read other people's stories about PHPV and their kids operations and none of them ended this way. They all got some sort of vision from it. Why is Joel so unlucky. Why is he so different that he got nothing from all of this?

This is breaking my heart. I want my heart broken for things like my baby putting himself to sleep and not needing me anymore, for him weaning off the breast, for his first day of school, for him riding a big boy's bike. My baby just doesn't get to be a baby, he's always getting poked and prodded and touched by all these different docotrs and nurses and having his head held and arms pinned to put in drops or a gas mask on his face or a lens in his eye or a patch on. Can't believe how sad I am. I just can't help him.

1 comment:

  1. I don't know what to say I really feel for you and Joel right now! Is there another Eye Specialist in Perth that you could possible see? I haven't got any answers but please try not to beat yourself up over the choice you made to have another operation for Joel. I know that if William gets scar tissue I'd definitely go in for the operation. Any mum would! I'd feel real pissed off too if my Dr didn't take the time to see William - the only thing I can suggest is to hound them all day until they get Dr Lam to talk to you!