Tuesday, September 30, 2008

Fun stuff, scary stuff

First the fun stuff! Earlier this afternoon, Orion must have been
having some happy dreams. Out of nowhere he raised one arm as if
holding a guitar, took his other hand to pretend strumming, and then
started singing and oooohing! We were happy to see him do his favorite
thing, even in his sleep. After waking up, he was pretty relaxed and
cheerful, and continued with sign language, asking for a bottle,
signing "eat," waving hello to everyone, and making that funny face he
doescwhen the camera comes out. He even motioned the itsy bitsy spider
as I sang. We knew he was feeling better and not so scared anymore.

Scary stuff: Orion got too large of a dose of morphine. He instantly
knocked out and became too sedated. Though he was still breathing, he
was not taking deep enough breaths to receive adequate oxygen because
his body was over suppressed. I was watching the monitors and his
normal oxygen levels of 95 dropped fast to 59. I alerted the nurse,
she called the dr immediately, and when he arrived, he gave Orion a
reverse agent that would wake him up. During all this, the nurse is
manually pumping air into orion's mouth with a bag, alarms are going
off, people are rushing in to help, and I'm freaking out! Bo had
stepped out for a minute, and the nurse can see panic in my eyes. Just
as I was about to text bo to rush back, he already walked in and
panicked not being aware of what was going on. Orion returned to
normal pace, but was still quite sedated. After things calmed down,
the doctor came to first apologize for the incident. Apparently, since
he was in such an uncomfortable state last night, it took high doses
of drugs to get comfortable. Today, Orion was feeling much better, but
the doses were never changed to fit his comfort level for today, so
basically he received an overdose of morphine. The dr was very
apologetic amdvsaid this should have never happened. He also said it
will not harm his body, and he will slowly come off the morphine
within the hour. Phew, we were pretty scared at that moment, but we
also know that it was minor and not a setback at all.

After an hour, Orion woke up and has been a champ. He's enjoying
watching food network with mom and chatting with the other babies in
the room. He also had a nice visit from Ryan and Verike and their
sweet surprise! A panda lunchbox full of goodies! He likes his new
monkey, book, and cool superman tee plus his favorite sippy cup and
special set of travel cutlery. Mom will never lose a spoon again :)
they were very sweet to bring dinner (Thai is our fave) so our tummies
are full and happy. Thanks guys!

Well Orion is off to dreamland, and so is bo. I'm just here keeping
the nurses company ;) we are still in the 48-hr post-op critical time,
but he is doing great so far! The RA line will probably come out
tomorrow too. His chest tubes have slowed down on output, so we will
see when we make it to step down!

More updates later....

A is for apple juice!

Changed out nasal canula, snuck in quick pic

Happy sleep

Rounds

Just finshed rounds! They are taking him off milrinone which will
allow for them to take the RA line out later this afternoon. Yeah!
That means we can finally hold him after that! He is also ready for
liquids, so once he wakes up he can finally have a little drink! He
will be so happy. There is also talk about moving him to step-down
tomorrow. This is awesome! I'm trying not to get too excited so we
don't jinx it, but things are going smoothly. As the wonderful head
nurse said "I like this admission so far." me too! I said. Everyone
here has known us since orions birth and has seen us struggle through
rough times. Its good to be in a place that knows orions history so
well as well as understands our dedication as his parents.

Bo is taking a nap now, he was up all night while I got a 6-hr stretch
of sleep. Can't wait to bring our little man home :)

Awwww peaceful sleep with Froggy

Wild toddler!

Poor Orion is soooooo unhappy. They extubated him ten minutes after my
last post because he was getting so feisty amf out of control. They
pulled it out in hopes of making him more comfortable, but consider
this: 1) super tired, 2)very hungry, 3) wants to be home, 4) has all
these lines all over his body, and 5) potential headaches from faster
blood flow to upper body. He is the crankiest we've ever seen! He's
been attempting to roll over, get on his tummy and crawl out of that
crib. He scared the nurses pike crazy since he's got lines going
directly into his heart plus chest tubes and more. No drugs are
working at all. His body is so used to meds that they don't work for
him. Nothing is calming down. So bo is taking over the shift while I
get some rest. I'm just a couple of hours shy from being awake for 24
hours. Let's hope Orion will wind down and get some rest too.

Monday, September 29, 2008

Flailing arms at peace

This crazy one has been itching to pull out his breathing tube. His
body is so used to drugs, normal doses don't work for him. They had to
push his doses pretty high to keep him calm and not pull any lines
out. When awake he tries hard to flip over to sleep on his tummy. Poor
guy.

We are waiting for the attending to come by to decide if the breathing
tube will be taken out or if they will keep him sedated until early
morning.

Chris and sara came by and brought us yummy creamy pasta I was
craving. Thanks guys! Looking forward to getting out of here and
cooking you guys a nice dinner at our place for a change :)

I am just sitting bedside while bo is out in the hall finishing up
some work. Hopefully we can get a little nap in (I am living off of
one hour of sleep last night) and replenish. Will update when they
take the tube out.

Post op




Orion is doing great. He is secreting some blood in his urine and mouth so they are keeping an eye on that. His heart rhythms were a bit off in the last hour, so he is hooked up to a pacemaker for backup. Otherwise, they will try to wean him off the ventilator tonight and hopefully get the breathing tube out so he can start to eat!

He is moving around a bit but is asleep. He will open his eyes and get excited to see us, but his body is weak and can't move much. Our boy is such a trooper, we can't wait for him to start the healing process.

Thank you everyone for tour love and support, it truly helps and gets us through these times! More later! :)

Hooray!

He's in cvicu now and nurses are prepping him. We will get to go in
and see him in 20 mins. Drs say he did great. They also had to repair
a leaky valve, and he is looking good and pressures are low. Yay! Will
post pics when we get in.

45 minute call!

Wow we've never had this before! One of the volunteers that works in
cvicu got the 45-minute heads up, and he came out to let us know. We
love this place! We love that volunteer too, we always see him every
stay. More to come....

130pm still waiting

Hopefully dr. Reddy will be out soon. In the meantime, I am on coffee
number 4.... Will post as soon as he's out :)

After bloodwork during pre-op last week

Blackberry pig. 29 in one sitting and then some

Orion's response to "Who's Number One!"

A bit anxious

We have about an hour left to wait. Bo and I were talking about how
surreal it feels this time around. Maybe because Orion has been doing
so well, it doesn't seem like he needs this surgery? As we ponder
that, we think (and hope) that since he is so healthy, his recovery
could be faster. Let's pray for that!

We are just hanging out in the waiting area, and I just finished my
third cup of coffee. Yikes! Bo is busy trying to finish up work so be
doesn't have to be occupied the next few days. I was trying to take a
nap, but starbucks won't let me!

Will post an update soon. Thanks to everyone for the comments. We love
reading them!

Waiting

Orion went into OR at 830 and the surgery will be about 4 hours. Will
post an update as soon as he is out! I've got tons of pics to post,
just figuring our how to do it efficiently from my phone! Thanks
everyone for all your uplifting comments!

Pre-op waiting room!

Look at this happy face! He has been wonderful all morning, and has
been occupied with bubbles. More later!

Sunday, September 28, 2008

almost ready

tomorrow is the big day. we are first case, so we have to be there early. orion is already asleep and dad is taking a nap with him. i spent the whole week preparing the house - cleaning, antibacterial-ing everything, cleaning out the fridge, grocery shopping for snacks and water to bring with us as well as frozen foods ready for us at home when we get back, and endless amounts of laundry. we've also had plenty of visitors and tried to fit in some fun stuff along the way.

we started out the week with a trip to the beach. orion loved it!! he wasn't too excited about getting his feet wet, but he didn't hate it either. but he absolutely loved the sand. he spent a couple of hours throwing sand at mom and dad, and we also dug a big hole that he enjoyed sitting in. he cried endlessly when it was time for us to head home.

we also took a trip to cb2 in SF - one of the few stores in the nation! i knew exactly what i wanted, and i "needed" to have them before surgery, haha. orion actually hated that store. i spent about 2.5 hours there, talk about boring for a little rambunctious boy! he still had his fun by leaving a trail of cheerios on their immaculate floors as we walked out with our giant orange bag of goodies.

zarni and keith came up on friday, and we all had a nice breakfast at home with all my new cb2 dishes! we need visitors more often, it's very rare that i cook a yummy breakfast of pancakes, breakfast burritos, fresh fruit, and coffee. they spent the morning playing with orion, and he just had loads of fun with them. i told zarni i would be happy to hire him as our live-in nanny :)

next came grandma and grandpa! poor grandma caught a cold on her way over here, so she did not get to spend a whole lot of one-on-one time with her grandson. she is heading back earlier than planned with this little bug that she's got. but they did arrive in style with a new toy!! he is so in love with this alphabet train that he got. he's been playing with it non-stop.

i still need to start packing our things - clothes for everyone, orion's bottles, cups, utensils, favorite toys, and snacks. over the last few days, we have been reorganizing the whole apartment so it is more comfortable for orion when he comes home. our one-bedroom was originally split into two rooms: orion had his own room with his crib and all his toys, and we turned the living room into our bedroom. he slept fine in his room, up until his cath in june. since then, he has been very attached to us and refused to sleep in his crib. finally, we decided, we might as well all be in the bedroom! so we made a huge switch: orion's crib is now a toddler bed, we have our bed next to his, and all of his toys are out in the living room. it is overwhelmingly crazy and looks like a day care! sometimes i just can't stand looking at it! i have been sorting through old toys he doesn't play with anymore, and i plan on donating it to the rummage sale that happens monthly, and all the proceeds go to LPCH. having said that, there are random things laying around the house that haven't found its place yet. so i'd really love to get all this stuff squared away so we can come home to a cozy, organized, clean house. i suppose i call it "pre-op nesting."

anyhow, orion can't eat any solids past midnight, and he can only have clears until 4am. he is going to be so angry by morning! he always wakes up starving at 7am and ready for a big breakfast. we'll see how tomorrow goes. oh lucky orion! he just woke up so i gave him a bottle of milk. normally he drinks water in the night, but hopefully this will fill up his stomach a bit.

thanks again to everyone for thinking of orion, and sending so much love his way. the next few weeks are going to be a very trying time for all of us. orion has so much to go through, and he is such a strong trooper! we are praying for a successful, timely hospital stay. i will try to post updates as i get them, so check our blog often!

lots of love,
the aye team

Monday, September 08, 2008

early start and surgery date

the assessment went well! orion quickly warmed up to the three sweet ladies that came over. he discovered so many fun toys they brought, and we also discovered we have a well-advanced boy! because most of his skills were of a 25-month-old, he is not eligible for services. but they are trying to get him to qualify under "risk factors" since he will be having a surgery soon.

today's echo showed no changes. the right ventricle is still small, even though pressures are lower. doctors decided it is best to have orion get the glenn done, especially when he is showing good signs of health instead of waiting until he is worse. so the date of sept 29 sticks. sigh....

on that note, since we have about 3 weeks until then, we are going to visit my new little nephew! i want to come supplied with food, clothes, and goodies for him, so this week we will probably take a trip out to some fun baby stores. can't wait!

also, my parents have been staying with us since friday. my mom is having an amazing time with orion - she doesn't get to see him as often as bo's mom does. orion is just loving her so much and enjoying her company. we are also getting some great vietnamese home-cooked meals, and she has stocked our fridge, freezer, and pantry with so much food! we can feed an army!

i also forgot to mention we spent yesterday at the san francisco zoo! my dad had way more fun than i expected. i had forgotten he was a nature type of man, and he was all over the flamingos, rhinos, and tigers. orion was so intrigued by all the big and little animals, it totally wore him out and he missed the big zebras and giraffes. maybe the next time anson and vincent come, we can all go back and see them again. definitely need to post pics soon!!

orion's new words this week: "more bubbles" and "car." that tells you what he's into right now :)

Wednesday, September 03, 2008

Date changed again!

There seemed to have been some miscommunication between cardiology and
the surgery team. The surgeon's office didn't know orion's surgery was
rescheduled to sept 23 and still had him down for sept 9. I got a call
today being asked to do pre-op again. After discussing the date, she
said sept 23 was already booked, Orion was never written for that
date, and the next available slot is sept 29. Orion is now on for sept
29 and our cardiologist is aware.

I'm in the car right now while bo is at a dr's appt to finally get his
shoulder checked. He thinks he has a hairline fracture from soccer
about 3-4 weeks ago. After this, we're headed to SF for dinner out
with some family. It will be nice to escape the 90 degree weather!!

Tomorrow morning we have an early start assessment in our home. Early
start is a state program that helps kids that need assistance with
physical and mental development. I hope Orion qualifies! He did not
when we lived in SF county.

That's all for now, check back tomorrow for an early start update :)

Monday, September 01, 2008

slowing down

we decided to approach the bottle weaning and sleep training at a slower pace. he is ok drinking soymilk now from a cup, so we are gradually getting him off formula by mixing it with water. eventually, it will just be water in a bottle and hopefully he will dislike it and give it up naturally (and happily!). for now, he is still sleeping in our bed, and he is so much happier. yesterday, his spirits seemed so down from all the crying and changes, and he just wasn't himself. i'm sure a lot of doctors out there could tell us that it won't affect his future and how much he loves us, but man, it's tough to see the sadness in his poor little brown eyes. we are much happier seeing him smile and be playful, and it's worth the extra little body in our bed :) as long as he can start sleeping through the night without asking for a bottle, he can probably start sleeping in his bed after that.

so, after two days of researching non-dairy milk, i finally settled on a brand that is easily accessible and high in calories, fat, protein, and calcium. silk plus offers all the nutrients i was looking for, and they sell it at the local market. of course, there were a couple of other brands that i preferred to get, but i couldn't find it anywhere. plus, we already know orion likes drinking silk, i am just bummed costco doesn't sell it anymore. we are going to offer him soymilk for now, and we will try giving him cow's milk again later down the road. he seems to be allergic to milk protein (not milk sugar as i am), but i read that it's usually not permanent for kids.

other than that, we are all doing great. today orion and i finally went to one of dad's soccer games, and even better stephen took part in today's game. orion had such a blast playing around in the grass and kicking the numerous amounts of balls on the sidelines. it definitely wore him out and he was in bed by 8pm - hooray! i need to do that every night :)

i am pooped out too from our eventful day, so i am signing off. hope everyone had a great labor day weekend and enjoyed your day off.