Sunday, October 26, 2008
we've had quite a week! i went to a rummage sale and picked up an awesome early christmas gift for orion! and this is no ordinary rummage sale either. all the money goes to LPCH, so i know i am doing a good thing by buying more "junk" that we don't need in our house hehe. they have this sale once a month, and i have gone a couple of times before. stuff there is dirt cheap. i mean really, you can't go wrong with kids books for 10 cents or a nice radio for bo's office for 2 bucks or a lasagna dish i have been needing for only 75 cents! ok ok. on to orion's special gift: his very own kitchen!!!
he loooooooooves his kitchen! he goes through all the gadgets, loves putting things away, taking things out of the cupboards...he can spend hours in his little kitchen. he is definitely happy to be home.
we are also getting our home set up for halloween. i made decorations and placed them in our front windows, front door, and i still need to make a hanging decoration to put outside. we walk through our neighborhood daily, and he just loved looking at all the houses decorated with fun halloween things, so i thought he would enjoy it at home. i bought a pumpkin today too, hopefully bo will carve something cool :) we are still trying to figure out our costumes. i think we will spend tomorrow finalizing it. as for halloween day, we are going to LPCH for their festivities. we know everyone there, we know it's a safe place, AND they will offer much more than just candy! lots of games and toys will be so much more fun than candy for little orion.
semone and dennis are visiting this weekend. they came by this afternoon and we enjoyed some greasy, fatty lunch that gave us food coma while we watched a movie with our projector. orion didn't enjoy the movie so much, he wanted to play two guitars at the same time instead :)
he is happily asleep now, and i think i've caught up to all the chores i can manage for tonight. i am ready for bed! good nite!
Saturday, October 18, 2008
all the time to play! This kid doesn't sleep! He's definitely keeping
mom and dad very busy.
He is not having as many crying spells as before, but he still wakes
up from naps and sleep with panic. It takes a good ten to fifteen
minutes to snap him out of it. Other than that though, he is a joyful
I think bo and I are finally caught up on sleep and back into the
routine of things. I FINALLY went grocery shopping today (it seems
like forever) so we had some homecooked comfort food tonight.
MEATLOAF! Orion ate nearly one slice, apparently he likes ground beef
He's now yelling at us to put his shoes on. Gotta go!
Tuesday, October 14, 2008
Sunday, October 12, 2008
oxygen, and he's been on room air since this late afternoon. his sats
have been in the high 90s, even 100 at times! i took a picture because
it just seems so strange to see him at 100. but that's great! i'm glad
the weekend is over. our cardiologist will be back tomorrow and it
will be nice for him to see orion. i hope tonight goes well and that
we are closer to getting this tube out and home. orion is still
nervous being here, even when tina came he cried most of the time! :(
though she IS a doctor, orion doesn't know that and she was sad that
he was scared of her. she brought some delicious vegetarian vietnamese
food (i didn't tell bo she was bringing veggie style) and he was like
"wow, how did they get the bone out of the duck? tina gave in, she
couldn't not tell him. it was scrumptious nonetheless. orion ate a ton
of it! he had some of his own dinner of chicken noodle soup and jello
first, then ate a bunch of fake meat. i will post some funny pics of
him chowing down on jello :)
ok, time to get my coffee so i can stay up with O and bo is going to
get some much needed rest. more tomorrow!
home, we split them up, so he won't get so many at once, but they like
to give the once-a-day ones in the morning. there are also a few extra
thrown in there that he doesn't take at home: calcium, colace,
aldactone, etc. he was so mad at me for giving them to him. sigh...i
hate being the bad one! but it's easier if i do it than the nurse.
i missed rounds today, but bo gave me the update. the team wants to
keep the chest tube in for a few days longer until there is no more
fluid draining. just yesterday, 24cc's drained. that's almost one
ounce. so their plan is to watch the drainage, take the tube out when
it's all done, modify his lasix dose and watch him for a couple of
days to see how he does. that will also help them figure out a good
dose for him to go home on. so it sounds like another week for us. i
knew the quick discharge was too good to be true! orion likes to keep
us on our toes :)
so....nothing else new to report. he started eating today, only after
he dropped a major poop bomb! empty tummy's gotta get filled up. he
only ate breakfast though and had no desire for lunch. maybe some good
vietnamese food that tina is bringing for dinner will entice him to
bo and i are both pretty exhausted. last night, bo left to run some
errands, and nearly 2 hours later, showed up in our room. i asked
"what took so long?" his response? "i fell asleep in the parking lot."
oh and mami adame: thank you for the cupcake offer! we will be
somewhat near-neighbors one day, so maybe we can have a cupcake-baking
party and the kids can have fun decorating :)
Saturday, October 11, 2008
bo actually pulled orion's chest tube out! well, not out of his skin, but the connecting part of the tubes separated. drops of red fluid dripped down the crib and onto the floor - yikes! this was after we have been waiting hours to "save up" some fluid in that tube to be taken out and tested. this fluid is collected in a box that has measurements marked on it, and we were trying to save a few drops in the tube before going down into that box. so after that, we had to wait some more. haha, that's what he gets for making fun of me the last surgery when i accidently kicked over that collection box. at least when i did it, nothing spilled :)
so onto orion....he is absolutely miserable! he still won't eat, only wants to drink apple juice, and only mama can hold him. he likes when dad is around to play with, but when it's time for comfort, it's gotta be mama. so i'm tired. sitting in uncomfortable chairs holding a 20lb kid does a number on my back. but as long as orion is happy, i'm ok with it. the team said they still want to keep an eye on the drainage for a couple of days, so maybe that means it can come out on monday? i hope so because we need to get home and back to normal life! orion is already at an age where he can use his imagination. which means he most definitely remembers experiences in the hospital and probably has real nightmares about them. SO SAD. he gets so hysterical now. it's not just tears, it's full on screaming, crying, turning all over in the crib trying to get away, just at the sight of a nurse. he gets so angry, and sometimes we think he's mad at us too, because he knows we brought him here :(
today was a good day though, we got moved back to 3 West, which is the unit we are always in, and it's usually cardiac patients. awesome kathy and her fam brought delicious dinner from a place i've been dying to try. it's right near our house, so now we'll be walking there regularly to get our italian fix! she was also sweet to bring us goodies for breakfast, and lizzie brought crayons and coloring pages for our little man. i was hoping orion would cheer up to see his buddy, but he had none of that. he was pretty sad the whole time. after they left, he really threw a fit, and that was that. he wore himself out and now he's fast asleep.
maybe on our way out of this place, we will celebrate by stopping at the stanford mall to pick up SPRINKLES cupcakes. that is a great idea, don't you think??? hopefully we will be home before bo's birthday on wednesday!!!!!!
the tube is outputting a good amount, not a whole lot but enough. this is a nice definitive way to do it, and it's quick too. we don't have to go with the waiting game of using diuretics and hope that it works. this way orion can get comfortable faster and back home.
hopefully we won't need to be here long. saturday will probably be just a day to watch the fluids come out and hopefully by sunday we can go home?! i'm making my own agenda :)
orion still hasn't gotten any pain meds yet, we are waiting for the cardiologist to come in and look at him. hopefully we can get some to him before he wakes up so he's not too uncomfortable.
will post more as things progress.
We are down in cvicu. He's in the treatment room while we are sitting right outside the door. They sedated him with kedamine, and he totally zonked out. It should take 15 minutes and he should wake up about 20-30 minutes after they're done.
Honestly I'm a little bothered that there was some disagreement between the surgery team and cardiology team. If the ultimate decision is dr reddy's, then after a decision is already made by him, why is the cardiologist and NP telling me that they don't think it's necessary? It set us up to believe that the communication between them is poor and they go against dr reddy's decision.
Anyhow we absolutely trust dr reddy's decisions and know he chooses them for the right reason. If he thinks this is the bestvway to get all that fluid our, then we agree too. It just stinks for poor little Orion to have to go through another procedure so soon. But hopefully this will fix this problem fast and we can head home again.
Prayers to Orion that he will come out of this procedure okay.
Ok I didn't realize pigtail and chest tube are the same thing. Also the cards fellow doesn't think it is necessary as does the practitioner so they are trying to convince the surgery team to possibly hold off and see how the lasix does. Since Orion has been so fussy and only feels better with a bottle, he has drank a ton of juice. Docs don't like fluids in body when he is sedated, so now if they do put in a chest tube, they may wait until morning.
As for me I am tired but am holding Orion since he doesn't want to be anywhere else. Just staying awake watching spiderman 3. Drama!
Friday, October 10, 2008
Dr reddy wants a pigtail put in and a right chest tube. Policy is to draw blood twice then go down to ICU since it is a more controlled environment. He will need to be sedated. We will be heading down around 1am or so.
He is going to be even more miserable :(
It's such a bummer. Orion was finally cheering up today and eating and sleeping better. At least it was caught early and not to late at a point of emergency. Do we love our pediatrician, she is awesome!!!!
Ok, will update more later.
Wednesday, October 08, 2008
Tuesday, October 07, 2008
Orion's incision as well as chest tube wounds are bothering him to the point where he scratches until they bleed. For now, he is taking benadryl, which hardly works, a onsie so he can't lift up his shirt, and a thick jacket so he can't get to his skin. Sad, I know, especially in this warm weather, but he can't afford an infection! I don't think we can put any topical stuff on, but I will be calling the pediatrician tomorrow to see if there is an alternative.
Aside from his physical self, he is doing just ok. He's very sad, doesn't smile much, and he isn't excited about anything. He will play with his toys here and there, but his spirit seems low. Since we can't take him anywhere for several weeks to keep him from getting sick, we are trying to figure out what fun stuff we can do at home. If anyone has any ideas, we'd really appreciate it!
Heading to bed, hopefully the next post will be more cheerful!
Monday, October 06, 2008
blogging less and less because orion is getting healthier and needing
too much of my attention! he's eating well, being active, playing,
singing, talking, chatting, you name it. today we started him on
walking again, and he was up and going all by himself so fast! he's
going to enjoy being line-free and at home with all his toys.
he just has one last xray at 4am then blood draws at 6am. after that,
we're headed home! let's hope the discharge process isn't too long.
most of the time, the NPs will have our all ready to go early on.
he has not been sleeping well, and we know it will be a tough
transition time when we go home. we have experienced night terrors in
the past, and the last couple of days, he's been having them in the
hospital. that just means lots of crying in the middle of the night
and it takes a lot to soothe him. most of the time, the crying lasts
for about an hour or so, and it's usually in the wee hours of the
morning. so sorry to our neighbors....we have really thin walls!
OK, one more thing about our blog: people seem to have trouble posting
comments!!!! i will work on switching over to a new template. i think
our blog is running off one of blogger's older systems before they
changed things up, so i will update to something current and hopefully
that will fix the problem. BUT, i am glad to receive emails from those
who are having trouble commenting! thanks to everyone for all your
love and prayers. they are working!! it still seems scary to be going
home so fast. we are so used to being admitted for so long that by the
time we go home, he was fully healed weeks prior. let's hope for a
continued healthy recovery at home with no complications and no
returns to the hospital!
i have also met a couple of families while here, and i asked them to
join our heart group. i hope they do join because we could use a bit
more testosterone in the group! orion is so far the youngest and the
only boy. i think this is why his favorite colors are pink and purple,
and he loves flowery things haha :)
we can't wait to go home and sleep in our own bed with our little man.
as much as we sometimes hated that orion still slept in bed with us,
we really do miss the cuddling and snoozing. i will be happy to have
my own linens because whatever detergent this hospital is now washing
their linens in is giving me hives!!! even orion got a little rash on
his tummy which we decided was from the linens. why oh why did he have
to develop my sensitivity to just about everything in existence!
ok off to redo our blog. please be patient as we gradually re-add our
links to the site!
Sunday, October 05, 2008
today, so he's been on the move since! he didn't sleep much last night
after being very uncomfortable. his chest and stomach are so itchy, he
actually scratched his incision site until it bled! we decided
benadryl will lessen the itchiness and help him fall asleep (it was
2am). he fell fast asleep, but was waking up almost every 15-30
minutes until 7am. by morning, i was so exhausted from not getting
sleep, i woke up bo so we can trade shifts. bo played with orion while
i took a 2 hour nap, and orion JUST fell aleep for his nap! he was
awake from 7am to 5pm, and he was happy for the most part! i had gone
home to pick up stuff and run errands, so i brought back some of his
favorite toys. ALSO, bo's bicycle got stolen right from our carport! i
can't believe it. i have been going home every couple of days, and
even anson was staying at our place. but we figured out someone must
have stolen it yesterday (saturday). i have to work on getting a new
bike for him.
so anyway, orion's doing great. he's only got oxygen now and his pacer
wires too. they took out another IV in his foot so we can work on
walking today, so he only has one IV left in his hand. all of his meds
are now oral, but i guess they keep one IV in just in case. though
it's just about clogged anyway. hopefully they will take that out and
he will have two free hands!
today, right before nap, he was rolling around in the crib. he got
onto his tummy, crawled towards the TV remote and tried to turn on the
TV! can you see we are going to have a major problem going home to a
TV-less house....maybe we will start watching movies on a regular
basis with our projector. he has been so fascinated watching cars,
curious george, meet the robinsons, the bee movie, and many more. it's
nice the TVs here (and they are flat panels too!) have on-demand
movies, and a great selection at that.
we should be going home on tuesday! they are going to change one chest
tube dressing tomorrow, then the other dressing on tuesday, then we
get to go!!! send some love and prayers to orion for a continuous
healthy recovery and to keep on track with his wonderful progress!
Saturday, October 04, 2008
some morphine (and i made sure to know of the dose) and he cried the
whole time, but at least he wasn't screaming like he usually does.
he's now ready for wagon rides! we still have to bring the oxygen tank
with us, but as long as he gets out of bed, he'll be happy. they are
also bringing him down on one of the diuretics, so he's on the road to
getting out of here! hopefully his progress continues to be smooth,
and we can go home sometime this week!
orion's taking a nice nap now, he is so tired from all the excitement
this morning. bo has a lot of work to do, and i'm not so tired anymore
after my giant cup of coffee. i will upload a few more pictures. he
started laughing today and was more his usual self!
could do it from my phone and i wanted to share all the pics i took
today! orion is feeling much better. we still think he's having pain,
but the tylenol and motrin seem to help. he perked up and ate a ton
today! he had some cheerios, fruit, and anson brought mexican for us
tonight. orion ate a lot of bo's carnitas burrito! he snacked on some
carrots and green beans too, he is quite the veggie guy. he must have
been pretty hungry to eat all that pork.
his chest tubes are not putting out so much, so yay! we should find
out tomorrow when they want them taken out. maybe tomorow or sunday?
we also want to get his body moving, so i will check with the physical
therapist about what we can start with. his neck muscles are already
weak and he has trouble holding his head up on his own. we try to sit
him up as often as possible to strengthen those muscles. maybe
tomorrow we will do some wagon rides and take him outside to the
anson's visit was short, but sweet. he brought some amazing food and
orion enjoyed his company. well, tried to. anson always caught him
during his cranky moments. it's always great to see your uncle though!
not much else to report. he gets weighed everyday, and surprisingly,
he still weighs about the same as when he was admitted! though he is
looking skinny and his eyes are sunken in, i hope he will pick up on
eating well again and get back to his fatty self. it's fall now and we
have all these new fall dishes to cook and eat! he is a big squash
eater, and fall is all about the squashes!
ok, bo is taking a nap, and orion is in and out of sleep. orion seems
pretty depressed and very sad most of the time, and the only thing we
can offer is to be at his side all the time. being right up against
him comforts him and keeps him calm and not so scared. bo and i take
turns being next to him.
oh! i forgot to mention we moved into another room. it's only orion
and another little baby boy, and we have a nice bed to sleep on in
here so no more reserving beds in the lounges. this will be nice
because now we can take naps while orion naps without having to leave
the room. and if he wakes, we'll be right there next to him.let's hope
for only a few more days of this!!
thanks to everyone for keeping up with our blog!
Friday, October 03, 2008
attached and clingy, when he's awake he wants one of us at his side.
Who could blame him?! His eyes are no longer puffy, and we are
thinking maybe it's time for wagon rides! His chest tubes look like
they are outputting less, so hopefully at least one could cone out soon.
We see our regular nurses that we've had in the past, and they love to
help us out! It turns out we are not in IICU, we just happen to be in
the room because it was the only one available. One of our favorite
nurses put in a request for us to get the next open room, that way we
can sleep in the bed next to him (our room now only has a chair).
Time to hang with Orion, he's awake!
Thursday, October 02, 2008
today orion finally started to eat! he loves those cheerios, nothing will stop him from eating yummy O's. he cheered up a bit after eating, and we got a little smile. anson stopped by again this evening with greek food for me and him and bo's favorite sicilian pizza from california pizza kitchen. that guy and his need for meat. haha. we had a nice joyful dinner, then anson headed out to do some work stuff.
orion has been sleeping pretty well and getting good rest. let's hope he will be feeling better tomorrow! maybe we will move out of intermediate ICU and into a regular room. it's even more quiet and not so crazy. i can't wait to get him home so he can be his fun silly self again.
connect to, then they just do a quick recording for a minute or so.
The worst part is peeling off the super-sticky stickers. He was
soooooo mad...since he was already awake, the nurse changed his
dressings too. He's been crying since! Poor guy. Bo is here to comfort
him, I think he just wanted dad.
i also wanted to blog about the sleeping arrangements here! we really do love how accommodating the hospital is to parents and it is a very comfortable place. there are several sleep rooms here, and families can get beds reserved daily. we have a bed reserved for the rest of the week because we have an awesome social worker. we keep all our blankets/pillows on it, and when i went to bed at 3am last night, a couple was in our bed!! and using our blankets! i couldn't decide whether i should wake them up or just sleep somewhere else. i was bummed because it's already hard enough to get sleep here, when you do want to sleep, you want to be in a nice quiet bed to get some good rest! so i'm hovering over them, trying to see if they would wake up, but they didn't. i opted to sleep somewhere else and tell them in the morning. there is an abundance of couches that are throughout the hospital that a lot of families sleep on when they can't get a bed reserved. believe me, bo and i (and anson and bo's parents!) have all slept on random couches to squeeze in some shut-eye. i have no problem with that! but i was pretty bothered that other families think these couches are not acceptable places to sleep and steal another family's bed. oh well. i suppose i need to put up a big fat sign that says "reserved aye family." it helps so much to get sleep in a quiet room, even if it's only a couple of hours.
anyway, things are good with orion. he is showing his usual feisty side which means he's doing great!! he loves to put up a fight and not let anyone mess with him. hopefully the medications will help drain the excess fluid in him, get the chest tubes out and GO HOME! i am looking forward to the little halloween party i want to throw for orion. get him dressed up, have lots of pretty pumpkins and halloween goodies around, and have fun! i can't decide what costume to make for him. if you have any ideas, please post comments!!!!
Wednesday, October 01, 2008
to eat his lunch (rice, hamburger and fruit), but he did love his
soymilk. He drank so much of it, it gave him gas and was so
uncomfortable. He got some gas med and fell asleep right after,
probably wore himself out from all the crying.
Kathy and lizzie stopped by with starbucks! I'm a happy mama. Stephen
also took the train down to see little o, and anson will be on his way
Things are going smoothly so far. We think there was a mixup about
Orion. Doctors ordered Zantac for him because he was throwing up, but
bo and I don't ever recall him throwing up? So our nurse is checking
on that. He doesn't need more drugs that are unnecessary.
Hopefully tonight will be a quiet night. The NP said we can be
discharged as early as Sunday, but will at least be going home
sometime next week. Wow, fast!!
this morning, did an echo, and everything looks great. He has a tiny
tiny bit of fluid in his lung, so they arecwatching that, but it is
nothing alarming. We love being on the third floor - it's quieter,
slower-paced, more relaxing, and a lot less poking. He is happily
sleeping and just hanging out! He babbled a bit, and smiling here and
there, an excellent sign of better health. Bo is out taking a nap, he
did not sleep all night while I slept too much! Anson is coming later
today, Orion will be so excited to see his uncle.
Will post more later!