3 days til the op

And he's still not 100%. The Anethetist is due to ring me this afternoon to see how he's doing. All I'll be able to say is that his cough is worse but his nose isn't runny anymore.

I really hope they don't leave the decision up to me.

Persistent hyperplastic primary vitreous (PHPV), also known as persistent fetal vasculature, is a rare congenital developmental malformation of the eye, caused by the failure of regression of the primary vitreous. It is divided into anterior and posterior types and is characterized by the presence of a vascular membrane located behind the lens. The condition can be of an isolated type or can occur with other ocular disorders. Most cases of PHPV are sporadic, but it can be inherited as an autosomal dominant or recessive trait.

This is an excerpt from an abstract by Barkur Shastry in a study of Clinical and Experimental Opthamology. Over the next few days and weeks I will be doing a bit of research in regard to a link and will post anything interesting I find.

There has to be a link

I've just been reading another blog about a lady with a baby with PHPV. Her boy also has a cleft lip. My mum had a cleft lip and my brother had a cleft lip and palate. This isn't the first time I have seen the cleft lip/palate link on a PHPV board, blog or forum. There has be be more to it that just a coincidence.

If the chances of getting PHPV are "random" and 1 in a million and the chances of a cleft lip, alhough proven to be genetic, are also very small, how it is possible that there are so many kids born with both? Or if they don't have both, as in Joel's case, there is a family link somewhere down the line? I don't have a cleft lip or palate, neither does my other brother, but that gene is obviously in our makeup, there just has to be more to it than coincidence.

I wish there was more information. Not that it will help, I know that it's not going to change anything, my curious mind needs to know...

Still sick

This morning he's woken up with a cough too. I really don't think he's going to be well enough for the op.

I haven't been patching him for the last 3 days, he hasn't worn his lens either becuase of having the drops every few hours and taking it out and putting it back in. He is REALLY freaking out again while he's patched, so I am pretty sure he can see basically nothing again. Plus I was thinking that the surgery is only days away so those few days can't hurt but now....If his op isn't for another week, that could potentially be 2 weeks without the lens in :-( I feel terrible now, I wish I just pushed through it and put the lens in and kept patching. I don't even know how he'll go with the lens in today, his eyes are all red from this damn cold. I'm really frustrated.

Rich goes to Melbourne tomorrow for 4 days. He's back on Sunday. He's probably glad to be going so he doesn't have to listen to me going on about the op, lens, patching, drops, cold, coughs....

General Anesthetic and his cold

I just spoke to the Anethetist and he said to just watch Joel for the next 72 hours and see what happens. If it goes to his chest there's no way they'll put him under a GA, so I just hope it stays in his sinuses. Well, best hope is that it goes away totally.

I remember reading, in my research before his first GA, of a little baby who had complications following his surgery because he had a chesty cold 2 weeks before he was anethetised. It's pretty nerve racking stuff! I am really nervous for him. I really hope this cold goes away soon or else I am going to make myself even more nervous knowing there's that one extra risk.

I will just keep loading him up on breastmilk, that stuff is magic ;-)

Joel has a cold

I don't know what this means for the surgery. I know the hospital warned us last time that if he had a cold they probably wouldn't put him under a GA. I really hope it clears up by Monday. I've been researching about GA's and respiratory issues and it looks like it is very dangerous for babies so if he is still sick or if the cold is lingering I wouldn't risk it.

Sigh.

Green eyed monster

I have been debating whether or not to post this. I think there's a line between being honest and giving away too much of how I'm feeling but this just keeps coming up for me and I want to get it out.

I get really jealous, sad, angry and disappointed when I see a toddler with perfect eyes. All I can think is "Joel will never look like that". It kills me, it breaks my heart. I see this gorgeous little face looking at me and having this conversation with me, whether it's at the shops, park, playground - wherever - and I just get so sad that my little boy will never have these two perfect big round eyes. It just makes me so sad that I can't even look at another child without that thought in my head.

To me he is perfect. To me he is handsome and sweet and so loving and affectionate, so the feeling is contradictory. I want to not think "Joel will never look like that". I want to just appreciate the beauty in every child. I wish I could just talk to these other kids and think "wow, they're cute." But I can't. I hope over time it goes away.