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

Monday, July 19, 2010

Day after third surgery

And he is doing well. He seems happy enough, just a bit irritable. We are going back to the hospital for a check up as soon as he has his morning sleep. We had a pretty average night, I have this unbelievably annoying cough and every time I coughed, he would wake up. So frustrating. He wouldn't sleep in his cot by himself, just upright on me so we didn't get much sleep.

The operation took a lot longer than I expected. He went in at 3:45, I saw him get anethetised again. That never gets easier. I was trying to tell him "you're mummy's best boy, just a quick one this time" but I've lost my voice so it was just these stupid croaky sounds and I was so angry because I couldn't talk to him properly. I know it sounds unreasonable, but it really pissed me off. The surgery itself was supposed to take 20 minutes. I thought he'd be out in recovery by about 4:45 at the latest. At 5:15 I was getting really worried and asked the nurse to find out what was happening. She told me he wasn't in recovery yet, still in the operating room. Finally just before 6 they said he was out. I went in to recovery and he was screaming again, bright pink all over and the nurse was trying to cradle him but he was squirming and crying. She gave him to me and this time I was glad they had taken out all the drips except the fluid one in his arm before I got there. He didn't have as many puncture marks all over him this time, it looks like they got it into his left wrist on the second attempt, they had also tried his right.

He was screaming so much he wouldn't feed so I was just cuddling him while he cried. He calmed down after about 5 minutes and had a big feed then fell asleep so we walked back to the ward with the trolley because his drip was still attached. I am worried about my milk suply because his feeds have been so up and down the last 2 weeks. If I can't keep breastfeeding him I'll be so disappointed. It is a really important part of their baby-hood for me.

The surgeon said that when they went to drain the blood it just kept bleeding. They have filled his eye with jelly to try to stop it from bleeding. They think he has a blood disorder called Von Willebrand Disease (http://en.wikipedia.org/wiki/Von_Willebrand_disease). It seems fairly common and harmless enough, excpet when you're a tiny baby and you're having surgery on your eye. It basically affects the bloods ability to clot, so he just keeps bleeding. They are testing him for that this week.

I feel like I'm in the ocean, trying to swim out to a point in the distance but each time I get anywhere, a huge wave comes and tries to drown me and pushes me back where I was. I can see the calmer water on the horizon but I wonder if I'll ever get there. I just don't know if I can handle any more bad news about him.

I've put up some pictures of him from yesterday. I'll update once we've seen the specialist again and know if yesterday was a success or not.

1 comment:

  1. You have both been through alot! Thinking of you.