My Beautiful Ryan xoxoxoxo

Our beautiful Ryan was born in 2005. He was born with a condition called Blepharophimosis Syndrome. This condition affects the eye area making them look partially closed all the time. Our gorgeous boy is a tough little bugger though and has never let this condition affect him. He get's watery eye's regularly and has never complained, he just takes it all in his stride. He has now started school and gets asked by the other kids why his eyes are different and his reply is "I've got special eyes!".

Thursday, June 24, 2010

The day arrives - Operation #1


Well... Tuesday 22nd June, 2010. The day we've been waiting for had finally arrived. We had to be at the hospital by 10.45. We were up at 6.30 and fed Ryan brekky - he ate 5 pancakes (pikelet size!) with nutella! We usually struggle to get a piece of toast into him, he must've known it was going to be a while till his next feed! Rell & Josh headed off to work and we all said our goodbye's, we were a bit emotional with the stress of the day and not knowing what to expect so it was a little teary!

We left Narelle's at 9am and got into the city a bit before 10. Still another hour to wait! Mum & Dad met us and we just hung out outside and played and tried to keep busy. Ryan & Cody had a play around - running jumping & yelling! They had a great time - the rest of us were nervous as hell and just trying to keep a brave face.

Then it was time to go - we said our goodbyes and off we went. Ryan almost pulled us through the doors to the hospital he was in such a hurry. At this stage I was almost in tears because all I kept thinking was "the poor little bugger doesn't have a clue what he's in for!!!!"

Into the ward - Ryan was weighed, measured and given his special PJ's! We got him all ready and then went through the box of "goodies" the hospital gave us - a special teddy / book / texta's etc. This kept us busy for a couple of hours in between waiting for the dr's etc. We took lots of photos and played lots of cards etc. Ryan was amazing - took it all in, asked heaps of questions and just got on with it.

The doctor called in to check on us and let us know that we'd be in approx 1pm and that it would take approx 1 - 1.5 hours. I was in a little shock cause I thought it would take longer! The anaesthatist also called in and checked him out - asked lots of questions and asked us if we had any preferences as to using the mask or a needle. He said the needle was quickest and easiest and that he thought Ryan seemed to be "pretty easy to get along with" so we decided to try that. He said if Ryan was distressed or if he looked like having trouble he would use the mask.

And then we waited again.........

1pm came and we headed downstairs to the operating suite. We were told only one of us could go in with Ryan to the anaesthatist - Andrew went in. I gave Ryan some big cuddles and told him I'd be there when he woke up, then they walked off hand in hand. That is when I broke down - I cried and cried watching them close the doors. I was so scared for him. When andrew came back though he told me that Ryan was great - asked more questions and didn't even budge when the needle went in. He watched it go in and asked "what does that do.........zzzzzzzzzzzzzzz" He was out to it straight away!

Andrew and I went and had some lunch and then headed back up to the waiting room. I was quite sick at this stage (blaming it on my noodles for lunch!) but I think it may have just been nerves! It seemed to take forever but at 4pm we finally got the call that Ryan was finished and waking up. Again we were only allowed to have one of us in the recovery room but this time I went. By the time I got there he was dead to the world again ... it took another 45 mins for him to wake up. His eyes were covered in blood and a little bruised. We cleaned him up in recovery and he had an icy pole.

We headed back to the ward where Mum & Dad and Cody & Jesse had arrived. It was a huge relief for all of us to see Ryan had pulled through fine. He got up a few times and talked away to us then went back to sleep. It was about 7pm by the time we got him awake properly and he ate a cup of ice cream / icy pole and a vegemite sandwich! Needle's etc all came out with no problems and we were off home! WOW

It was a huge relief to be heading out of the hospital, Ryan slept most of the way home but when we got there was wide awake!

He ate again - banana bread and then ice cream, before falling asleep on Rell's shoulder in front of the tv.

3 comments:

  1. What a relief that the first one is over. He has amazed us all with his strength, courage and good humour through this whole thing. What a truly amazing little man!
    Love you all
    Sherryn

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  2. Hello,
    I live in Vancouver, Canada. My son also has blepharophimosis. He just turned one and had his first surgery (to widen his eyes towards his nose) when he was six months old. He probably won't have his second surgery until he is closer to three years old. I enjoyed reading about how your son handles questions and comments. Thanks for sharing about your journey.

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  3. Thanks Sherryn - yes he has!

    And elaine, thank you for your comment, it is nice to hear of other parents with children with BPES. I hope all goes well with your son's surgery and feel free to comment or email me any time.
    REgards,
    kerri

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