Thursday, February 14, 2013

We are going home soon, What a difference 5 years makes.

Orion's cath yesterday was a success. The Melody valve was placed successfully, and the result was a pulmonary valve with little-to no leak (about the same as you and me). Needless to say Tawny, I, and Orion (once O fully recovers), are ecstatic at the outcome. Just only 5 years ago, when Orion got his pulmonary value placed, there was no option but open heart surgery. Now after two days at the hospital, Orion already seems back to his goofy self and is about to be sent home.



orion
mommy 
pwa pwa a

-Bo & O------------------------------^^


Wednesday, February 13, 2013

Orion in the OR, we are waiting and hopeful.

It's been more than a year since we blogged, not a coincidence, Blake is already more than a year old. He's been a handful of energy, mischief, and ruckus, and we couldn't enjoy it more. But alas, between the two little rascals, it leaves us with no energy todo anything else. We do take solace in knowing its only temporary... or at least tricking ourselves into believing it, cause Orion mellowed out at 5. Orion is a smart, silly (after next week) six year old, in kindergarten and is a very very sweet big brother. He is thoughtful and still has his obsession with planets, but has branched out a little to jellyfish and ocean creatures (which really isn't that much different from space exploration). Blake is also sweet, but much more brutish. He is walking, but will do a full speed crawl, with his heads down, to get where he wants to go, ultimately hitting his target full speed with the top of his head. He is obsessed with the roomba, Mickey, board books, and cars, and is bent on destroying anyone of those things. They are so great to watch together, and I am so happy that I can easily see them becoming as close as my siblings are.

For the last year or two we have been on edge, watching Orion's energy level and echocardiograms get more and more affected by his leaky valves. So last echo, a few months back, we (the doctors and us) decided that it was time to do something about them. We have been waiting for Orion's weight to get to a threshold where he can get his a pulmonary value placed via catheter; it's a two day hospital visit, as opposed to up to 5 weeks with a open heart surgery. He has been on the bottom limits of the acceptable weight range for this operation for the last year and half, and being in kindergarten and catching multiple colds and flus, his weight has not changed. We did not want to keep him out of school because he loves it so much: it empowers him socially, and mentally, helps him grow emotionally by leaps and bounds, and a side benefit gives mommy a little bit of peace with only one kid to care for for a few hours. He loves school so much he skipped bring your child to work day at Google this year. These benefits to us out weighted the risks. So he has been the same weight... and so we decided that waiting longer and allowing him get worse would be futile. His quality of life is ok right now, but will soon get worse, and could be so much better. We went a head a scheduled a cardiac catheterization to make a plan and attempt to fix one of his leaky valves.

Today is that cath and I just rolled him into the OR.

The plan is to take precise measurements and pictures of inside and around his heart. Then, if he's big enough, they will place the melody valve. If he is not big enough for the placement, the cath will provide detailed information to allow the surgeons the best plan to do a more invasive valve replacement. If he is big enough (or rather is arteries), he will get a series of stents over where is current valve is. The first over his current valve and to slightly expand the area. The second to expand the folded valve in place. Within 6 weeks, his cells will grow over the stents and valves and he should have little problems with it.

So that's where we are now, waiting to hear what the next step is, waiting for orion to get out of the OR. In the past we have gone home the same day, as well as a separate time, encounter strokes and seizures. So we have see the best and worst outcomes and they all sit in our minds. After talking to the cath surgeon, we are hopeful they will be able to place the valve and are looking forward to getting our happy quirky little guy back (after the anesthesia wears off, of course).




Bo