Welcome

Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Tuesday, January 4, 2011

We are finally on the other side!

We got moved to PICU about 6:15.  Terry and I got to ride up on the elevator with him and then had to wait in the waiting room while they got him situated.  Braydon is sleeping right now.  He has a drainage tube from his head that is removing the excess fluid and some blood.  He has 3 IVs.  One in each arm and one in the leg.  He also has an arterial line that is monitoring all his vitals.

The surgeons told us that the surgery went well, but we probably won't see the results for a couple of days as the swelling is going to get worse.  However he looks perfect right now.  Braydon ended up needing a lot of blood due to the fact that his skull was popcorn like.  That means that parts of his skull were really thick and then some parts were really thin.  So we they cut his skull there was a lot of blood.

They want him to rest as much as possible so unless he is really agitated I won't be able to him until tomorrow.  He also won't be able to eat until tomorrow.  But by then I should have plenty of milk stored up.  I just want to cuddle him but I know this is what's best for him.  Only one of us can stay through the night so that will be me.  I just don't think I can leave my baby.  I'm sure Terry will be up here bright and early.  Hopefully he brings me a Starbucks.  I hear we might be in for a rough night.

We want to thank all of you for your prayers and support.  We couldn't haven't gotten through the day without it.

My perfect sleeping angel.

And we're done

Doctors came out and told us everything went well.  His skull was thicker in places and thinner in others.  Which is why he bled a lot.  They had to give him a full body's worth of blood.  He's not awake yet and will be in recovery for a hour so they can wake him up. 

They just had to fix the back of his skull.  He did have a high amount of pressure on his brain so it's good that they moved the surgery up.  This will be my last update until they move us up to PICU.

He's almost done

They are closing up the incision and going to clean him up.  Then the doctors will come out and tell us how it all went.

Update #3

They are still working on the skull.  They need to figure out how to put it back together.  Braydon did end up needing a blood transfusion.  Once the doctors come back out we'll be able to know how much.  I guess all that iron we gave him was all for not.

Update #2

They are still working on the skull.  The nurse who does the updates leaves at 4:30 so that might be our last update.  They are seeing what they can do to make sure we still get our updates.

1st Update

Everything is going good.  They've made the incision and they are mapping out what pieces they are going to remove from his skull.

I missed the update so I'm just repeating what Terry said.  But they say he is doing good.

And the fun has begun...

Braydon went back to surgery about 2:30.  We should have our first update in about a half hour.  However it's going to take about a hour for the anesthesiologist to get all of her work done before they can make their incision.  Of course the plastic surgeon is running late.  But they are going to start anyways since the Anesthesiologist and Neurosurgeon need to do their work first.

It was a tearful good bye, but I know Braydon is an excellent hands.  Once we hear back from the news I'll post an update.