Thursday, April 05, 2018


Orion woke up sick this morning, with a sore throat, cough, runny/stuffy nose. I cancelled the cath (it was set for next Tuesday) since they want Orion to be free of any symptoms for four weeks. It has been rescheduled to June 26, the kids will be out of school and Blake will be in camp. Hopefully this works out for the best. I'm pretty sure Orion was relieved, but he will have to face this again in a couple months. At least he will finish out his 5th grade year with fun and no worries! 😜

Thursday, March 29, 2018

We are at Stanford children's today, first consultation with the cardiologist, then MRI. I (Tawny) actually just left to go pick up Inara from school, while Bo is there with Orion. He has been getting tired quickly after exercise, just a few minutes of running will get his SATs to drop down to the low 80s. They are hypothesizing that his FPO/ASD is leaking too much oxygenated blood out, causing him to fatigue. He has a cardiac catheterization scheduled for April 10, they want to balloon the FPO to see if that improves his oxygen levels. If it does, they will put in a device to close the hole. If he doesn't need it, or if the device is too large (it's about the size of a quarter), they will check back on him in a year or two. Brief post, I'm in the car pick up line to get little Indy! Will update again :)

Friday, April 05, 2013

Orion and Blake update

Orion is now 6 weeks post op and doing fine. Lots of minor obstacles but all is good now. His incision site got infected multiple times, he had what drs think was a mini stroke which brought him to er, lots of blood tests and ultrasounds. He goes back to cardiology for a check up next month and we will talk about changing his meds. Overall his energy level is much higher. I recall a day where we spend the entire morning and afternoon on a school field trip to a farm (lots and lots of walking!) and when we got home he played tennis for a couple hours! He is still having night terrors but they are lessening. He's happy to be back at school and having play dates to keep him busy.

Blake has been sick with a cold forever (me too) so he is mostly whiny and clingy all day long. He likes to fight sleep. He would rather spend his time eating. Now a year old, he knows so much! He's a good talker (mama, dada, brother, more, bird, car, done, Elmo, big bird) and he signs a lot. He understands sample commands (clap your hands, get your shoes, dance, jump) and he answers yes by vigorously shaking his whole body up and down. Sometimes I forget to play games with him like "where's your nose?" etc maybe because I forget he's still a baby?? He seems like such a big boy to me. So today I asked him about different body parts and I was surprised he knew so many: hands, feet, nose, mouth, ear, head, penis :)

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.

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).