Friday, December 19, 2008
earlier today, we went to visit the nelsons to bring them a big bag of goodies, courtesy of "heart babies of the bay" and the manzi family. several members of our support group up here sent me photos at my request. i wanted to put together a book of heart babies so they can see how healthy and wonderful the kids are! the campodonicas also included a sweet pink butterfly and tinkerbell blanket that jennifer made. rana, who had met the nelsons at chla, also contributed a giant sack full of yumminess. it was my pleasure to do the shopping, and got some great stuff at cost plus world market, one of my favorite stores, and one of my favorite jobs during my college days.
after that, the three of us had dinner at our favorite korean restaurant, sigoljip korea bbq, in santa clara in celebration of our 3rd anniversary - that is, our "BF/GF" anniversary, not wedding anniversary, hehe. we ordered way too much food on top of all the little dishes they serve you that we totally forgot about. orion ate TONS because he was so focused on all the other kids in the restaurant. he didn't even realize how much tofu and beef he ate.
my hair is sooooooo long! i haven't had a haircut since june, and i can't wait to finally get down to OC to see my gina. orion was so nice and clean, up until the last 5 minutes of the meal, when he decided to start throwing rice everywhere. mmmm, nice and sticky. we added an extra big tip just for the mess he left.
we are driving down monday, hopefully if the weather permits. it has been icy the last couple of days, so if the weather is no good, we'll stay up here to be safe. currently, our presents are wrapped and are high up on shelves out of orion's reach. our sad christmas tree has ornaments only on the top half of the tree since he kept throwing them all over the place. the bottom tree is now decorated with old halloween stickers. maybe next year he will be old enough not to mess with it.
off to get the monster to bed. he had an insane day today after getting no sleep last night and having an off-schedule day today.
Thursday, December 11, 2008
orion got some codeine right when we arrived for our appt. the surgeon gave him so local anesthetics to numb the area. he dug in there with scissors (it was not pretty). i just about cried with orion. they found a suture in there! from two months ago, hence the infection. they dug it out, and he should be fine now. we are continuing the antibiotic for another week, and he should be set. thank goodness that is solved.
i also noticed yesterday that orion has a new tooth! no wonder he has been cranky and not eating! now that this infection thing is over, maybe he will start feeling better again and back to his usual self. until then, we are just bearing with the tears and madness through the days and nights.
he hasn't had a B-O-T-T-L-E since that night i last blogged about it. he has been so good. he still signs for one, but we have not given in. it has been replaced with katie mulua videos, so at least he is being soothed in some sort of way.
after our clinic visit today, orion and i were viewing the choo-choo train the hospital has near the heart center. we ran into justin (moriah's dad). being me and practically frantic and still stressed from the procedure, i went on and on about orion and DUH! finally hit me and asked how moriah was doing! (silly me, she just had heart surgery last night!). what a dummy i am. her surgery went well, but she is still having a lot of GI issues. they really could use some prayers right now. that poor girl has been through so much, so much more than orion has, and i can totally feel for her parents. so many questions unanswered, it really is a tough thing to go through. so please send prayers to the nelsons, they really need it!
Saturday, December 06, 2008
today, i couldn't find my phone. i used bo's phone to call it.
i found it in bo's shoe.
how cute and funny is that? i love how kids just do silly things without thinking anything of it.
the last couple of days have been big days. bo started using the shelf from our dining table and turning into a ramp. he inclines it on the couch, and orion practices walking up and down it, grabbing his cars and racing them down the ramp. our physical therapist actually suggested this kind of exercise several weeks ago to get him to build up his muscles. it's working! it's also helping out his balancing skills, and it's all fun and games too. it's one of his favorite past times.
orion's also understanding when he's pee'd/poo'd into his diaper. he will go into the bedroom, grab a diaper, bring it out to us and point to the bedroom to go take him in there and change him. HA! he's quicker than us. he's also showing interest in his potty, so i think it's time to start....sigh....it's such a big job, but it's got to be done.
tonight was the first night he fell asleep without a bottle. he ALWAYS needs a bottle, whether or not he's thirsty. we've been contemplating lately on weaning him because that darn kid just drinks too much! an average toddler probably drinks 10-15 oz of water a day. orion drinks at least 30-40 oz. that is so much! and then, that really adds to the diaper changes, we must go through that giant value box in a month (that's 160 diapers!). plus, i think all that water-drinking is making him too full to eat. so tonight, we let him have one bottle (5 oz water) and he cried for more, but after 30 minutes of tears, he gave up and went to sleep. i'm aiming to not give him any bottles in the middle of the night (he always wakes up about every 3 hours to drink some water). i hope i don't give in!!!
he's also had trouble tolerating cow's milk in the past (rash and vomiting). we tried goat's milk, but that didn't work either. in the past week, he has become obsessed with cheddar cheese and stonyfield farm's yokids squeezers.
he never really liked yogurt from a cup, but these little tubes of yogurt is so appealing to him! he will eat two at a time, and will total 4-5 of these a day! i'm sure he would eat a whole box if i let him. you can find these at trader joe's.
since he's been tolerating processed cow's milk, i decided to try cow's milk again. i mixed 1 oz of whole milk with 3 oz of soy milk and he didn't mind it. no rash, no vomiting. today, we are at 2 oz whole milk and 2 oz soy milk and he enjoyed it. hopefully i can get him to drink just whole milk, it will be so much more nutritious for him, and cheaper too!!!
so, some great stuff happened over the last couple of days. on the downside, he hasn't been eating well in the last 4 days. he would eat breakfast, but would not eat lunch or dinner. then today, he didn't eat any breakfast at all, so i decided to make lunch fun and get him this:
ORION'S FIRST HAPPY MEAL!!
he ate most of the fries and half a nugget. he drank half of his juice. he ended up finishing the rest of the nuggets at home, only after i spent 45 minutes blowing bubbles to distract him and getting him to eat.
prior to mcdonald's, we took orion to one of our favorite parks in palo alto. it was such a nice day today, we decided to stop for some play time on our way home from LPCH's rummage sale.
here are some long overdue photos that are from the past month:
couch time with his fave soccer ball and raisins
reading after visiting moriah
response to "where's boobie?"
straws = inexpensive entertainment
dipping cookies into milk
that funny face you see in a lot of his photos is his infamous "picture face." he does this whenever the camera comes out.
orion also got to spend some quality time with my mom while she was here earlier in the week for a few days. i did not get any pics with my camera, so i will have to get them from hers. she cooked a TON of food, kept our apartment clean, and played so much with orion. he had a blast. she left in the morning while orion was sleeping, and that day was pretty rough for him. he was looking for her, calling her, and was just sad and moody. it took a couple of days for him to get out of that funk.
i hope you enjoyed the photos, and i will try harder to post more pictures in a timely manner!
orion's got another follow-up with cardiology on monday and also seeing pediatrician on wednesday. oh yeah, forgot to mention after him catching a cold, he also got a staph infection on one of his chest tube scars. the antibiotic ointment did not get rid of it, so he's taking an oral antibiotic. hopefully it will go away by wednesday! if it doesn't, i don't know what the next step is. let's hope this infection clears and does not spread to other places like his HEART.
ok, last bit of info: please continue sending prayers to baby moriah!!!! she will need heart surgery again, and needs all the love and healing she can get!!!
Orion's favorites are Vampire Weekend - A-Punk and Cold War Kids - Somthing is Not Right With Me and he loves to dance to anything Vampire Weekend (he actually liked it last summer when they first got played on Sirius Left of Center, before they blew up). Little Joy is a side project form the drummer from the Strokes. There are some really really funny songs like songs from Of Montreal or Rufus Wainwright - Instant Pleasure or Apoetnomadali - Upscale Orange County. The playlist is on "shuffle," you can turn shuffle off by hitting the button on the bottm There are 34 songs as of today, so don't forget to scroll down.
CHECK IT OUT!
TRY AND GUESS WHICH SONGS ARE TAWNY's Bo's or ORION's
Tuesday, December 02, 2008
thanksgiving was great. i meant to post earlier about it, but i will have to make this one short. maybe later!
my mom is visiting up here. she was originally traveling to OC since vincent's birthday party is this coming weekend. since we cannot make it to the party anymore, she decided to come up here for a few days. it has been great! lots of homecooked food, a babysitter, and even cleaning too! she's taken a good load off my shoulders :)
i also wanted to post a small update about moriah. she has been having setbacks after setbacks, so she needs a lot of prayers! it has already been 18 days post-op, and she's run into several issues and is still in the hospital, with the breathing tube. she might even need another heart surgery, so they will find out tomorrow what the surgery team says. i feel awful that we can't even visit them because we have been sick. this is such a hard time for ANY parent, we know exactly what it's like, and it helps to have support nearby, even if it's just a quick check-in.
we actually have a clinic appointment next week, and i'm hoping we will be germ-free by then to at least see moriah's parents outside of CVICU.
please send them some love and prayers!!!
Tuesday, November 25, 2008
this means we will not be joining the thipps for thanksgiving :( we are so sad to miss the chance to spend the holiday with friends, who really are our family. they offered to bring us some food which is so sweet. i think i will make a mini-thanksgiving dinner at home for the three of us. i'm thinking rachael ray in 60!
happy thanksgiving to everyone, enjoy your family and friends!
Monday, November 24, 2008
we are still planning to stay near home for thanksgiving, even though he's look great. vincent's 5th birthday is the beginning of december, so we will be down for that for sure! we'll be up here having thanksgiving with the thipps which we know will be amazing and fulfilling haha.
on a side note, i hate walgreens!!! orion has medi-cal, and they are always trying to charge me whenever i pick up prescriptions. today, one of the ladies was trying to convince me that, because i didn't pick it up the same day i ordered it, the prescription becomes invalid and i would have to request a new prescription from the doctor. since when were you not allowed to not pick up right away? anyway, another lady came to check it out, looked a lot more closely, and said i am allowed 11 days to pick up, and thus, was given our medication, no charge, still covered under medi-cal. sheesh, i wish there was better consistency out there!!!
Sunday, November 23, 2008
aside from that, we have been talking about getting a bigger car! the sentra is pretty small, especially when going on road trips, it's jam-packed in the back. so we test-drove the 2009 scion xB last night. what a fun, spunky car! we really did love it, but after coming home, we realized we honestly don't need a new car. we thought we could lease under our business and write it off, but really, we don't need a car payment right now. so that idea is out the window! maybe in the next year or two....but if anyone out there is looking into getting a spacious car that is not an SUV, seriously consider this car! it is such a great price, especially for what it offers, and you can't go wrong with a japanese car. plus, scion has set prices for all cars so there is no haggling. i think i should become a salesperson there!!
ok, i am off to start working on our new playlist. those songs are so outdated!!!
Saturday, November 22, 2008
his chest x-rays showed a teeny bit of fluid in his right lung. our cardiologist was busy that day, but he did take a look at the x-rays and reported to me over the phone. he wanted to the on-call to look at orion. so we waited in the heart center for a bit (by now, it was nearing the end of a friday) and we were so happy we were able to go to the clinic instead of ER! the attending we saw was great, and she decided to have orion return to his original dose of meds. he's back on lasix three times a day and is taking aldactone, or as we call it "pink bubblegum," again. since last night, he seems to feeling much better.
we are going to hang out at home next week to see how he's doing. if things improve dramatically, we will head down to OC for thanksgiving.
after hearing the news that we CAN go home, we paid a little visit to moriah to see how she's doing. much prayers out to her and her family please! her right lung collapsed :( she is getting treatment, and she's looking better, but there is still some stuff going on in there. let's pray she will heal soon so they may all go home! to read more about her, check under our heart families bloglist :) they are one of the cutest families we've met, EVER!
hope everyone's having a great weekend so far, and we look forward to spending our holidays with you!
p.s. i forgot to report one thing! the radiologist spoke with our pediatrician and told her that one of orion's chest pins broke?! our ped has no idea what this means, if it's a good or bad thing or what, so we are going to see her on monday to figure it out. sounds scary doesn't it? what a way to give mom a heart attack. will post more as soon as we find out!
Friday, November 21, 2008
we have been visiting moriah as much as we can, and the questions her parents ask us make me go back in time and remember all that has happened in his young life so far. i also love how much orion excites them just by seeing him and spending time with him. it lessens your worries when you see an older heart baby doing so well and being a happy-go-lucky kid. i appreciated seeing older kids as well while orion was going through tough times, or even before he was born! i recall being at ucla and the cardiologist we met with was kind enough to have us meet another heart baby (at the time he was just under two years old) and his mom. i was just in awe to see how beautiful this little boy was, how great it was to see him running around, and having the opportunity to talk to his mother. it was so encouraging, and i will always remember that day.
tonight though, orion really showed his determination and unwillingness to give up. and bo and i were very strong and did not give in (i'm usually the one that gives in after endless hours of crying). it was already past 10pm, and he was insisting on playing with his "coins" (leftover chocolate coins from his pirate booty on halloween). it was waaaaaay past bedtime and i had to be firm and let him know it was not time for play anymore. he cried and cried, i brought him into the bedroom, shut the door, and forced him to stay in there with me. he must have stood at that door crying his eyes out for 30 minutes. bo came in, he and i laid in bed while orion continued more crying for another 30 minutes or so. after a while, bo offered orion a bottle, left it on the edge of the bed, and we both said good night to him and pretended to go to sleep. within five minutes, orion came to bed, grabbed his bottle, and cuddled up with his dad. he was asleep in five minutes.
that dang kid!
but we love him like crazy and wouldn't trade him for anything else in the world :)
Wednesday, November 19, 2008
since then though, orion's been pretty cranky, not sleeping well, and in general just fussy. he is still eating well and doesn't seem to have any issues with fatigue or breathing. we can't figure out what's going on. maybe he is about to hit another milestone or maybe some teeth are coming in. we are just waiting to see if we notice anything different about him or if he starts feeling better. i hope he gets better soon because his endless crying/whining is driving us crazy!
i also think it's time for me to close the doors to tawny's kitchen. not my actual kitchen but the blog! i don't post often, and i seem to be struggling with too many blogs anyway :) i can barely keep up with the aye team let alone the others! so, since i am usually the one who posts on here, i will probably just fit in some of my own personal stuff into the mix. i AM part of the aye team right?! and somehow, bo and orion fit into whatever i'm doing too :)
currently, i'm on a cooking high. well, whenever we are in the hospital, all we do is eat take-out or food that our family has cooked for us or brought to us. as much as we love eating out, sometimes it's just nice to have a home-cooked meal! since being home (can you believe it's only been one month?), we are just scrambling around trying to get to appointments, or prepping to go somewhere. it's tough to have a nice, hearty meal. so, most of the time, i make quick meals from easy ingredients picked up at trader joe's. BUT, i still miss the "cooking from scratch" deal. hence the new cooking blog, needing some inspiration from friends and family, and frankly some new ideas other than my usual chicken dish (which by the way bo says he can eat everyday - reminds me of that everybody loves raymond episode and lemon chicken).
it also doesn't help that orion is still on his high-calorie diet, and i'm ALWAYS at the store comparing nutrition facts looking for the highest content. this is not helping my figure!!! i am considering making two separate meals now so orion can have his fat, and bo and i won't! that just seems to tedious, which is why i still cook all the high-fat stuff for all of us.
i also spoke to orion's dietician yesterday. she suggested offering him pediasure for higher calories and more nutrients instead of the soymilk. funny, she said pediasure has no lactose in it, but i looked it up today and it does. i may offer it to him anyway. she also said not to worry so much about him not eating his starches or vegetables, but to just keep offering them to him. even if he refuses to eat it, he knows it is part of his regular diet if we routinely put it on his plate. he will eventually eat it. we think he must be going through a phase because before, he would only eat veggies and rice, and no meat. now, all he wants to do is chow down on meat! he is following his dad's footsteps.
anyhow, i have brownies baking in the oven, but i think they are going to be a disaster. even dinner last night was a disaster. i'm having some pretty bad luck cooking this week. hopefully things will improve by thanksgiving!!!
Sunday, November 16, 2008
today we visited beautiful moriah at lpch who just had her second open-heart surgery on friday. this is a sweet family i met through a heart forum. i was drawn to her mother victoria, when she sent an email out asking for support and advice after she found out prenatally that her daughter would be born with pulmonary atresia. PA is a more rare heart defect (it seems most kids are either tetralogy of fallot or transposition of the great arteries). anyway, i forewarned her and sent the longest email i've ever typed in my life. since then, i have always tried to keep up to date on moriah and her health and progress. it was great to finally meet them in person today! they are such adorable family, strong-willed and so much faith. we will be visiting them more often while they are up here and hopefully when we move down south we can have some playdates!
victoria, orion, and me
orion was pretty freaked out going into moriah's room. the beeping definitely triggered some memories, so he did not stay for long. he was really sad and clingy :(
but some happy stuff today! he's been really into giving kisses on our cheeks. i kept saying "awwww!" it was so darn cute, he started to kiss our chairs. we were cracking up, and he started to do it even more, i had tears in my eyes and a stomach ache from laughing so much. he is so adorable and we are loving this stage of so much discovery. they grow up so fast!!!!
also, my friend nik and i started a cooking blog :) she is a sweet neighbor i had back in irvine. we'd always see each other walking the doggies, and we soon became friends. check out our blog!
cooking with family and friends
we have several members already, and it's just a place to share recipes with our family and friends. she has some awesome recipes, lemme tell ya! she's got quite the hand for baking, and i can't wait to try out all her other meal recipes. if you're interested in becoming an author, let me know and we will invite you!
tomorrow, orion has a follow-up with cardiology. we dropped his lasix dose from 3 times to 2 times on friday, so we will see what the doctor says. i think he is still peeing the same amount though and still drinking like 40oz of water a day! will post an update after the appointment :)
Saturday, November 15, 2008
i can't figure out how to embed the video in our blog, i will ask bo later. but for now, just click on the link! turn up the volume!!
Saturday, November 01, 2008
so much fun being pirates! we paraded around LPCH for their halloween festivities. we arrived a bit late, so we caught the tailend of the celebrations. orion got some coloring books, crayons, bubbles, and a pumpkin just his size. he had so much fun, but it took a bit for him to get into the happiness of it all. so many kids and parents in costumes, it was quite overwhelming for our little boy.
we visited the heart center to say hi to all the nurses there. orion led the way into the heart center and went straight for his favorite toys. we were ready to head up to the third floor, but he insisted on sitting down at the kids table to color. we had to pull him away and he tried to fight it, but i lured him with a kit-kat (i know, awful).
we got to the third floor, and right when we got to the double doors to enter the cardiac unit, you could see some major poutage on his face! he was so sad and kept pointing to go the other direction, but we saw one of our favorite nurse practitioners and wanted to say hi. he clung on tight to dad as we walked through the halls towards the nurses station to wish happy halloween to the rest of the team. he was pretty scared, so (again) i lured him with candy (bad mama!) and he grabbed a kit-kat!
we left soon after and headed back down to the first floor and played in their georgeous courtyards. orion ran around and watched kids chase each other, and we had a nice little impromptu photo shoot. lots of pics being posted to flickr, i will let you know when they are all up.
after the daytime fun, we headed to anson's friend daniel's house for some nighttime fun. lots of kids, lots of yummy burmese food along with pizza and snacks....orion had a blast running around with the kids. it makes me feel really bad that he doesn't get to see kids often and play! i need to start socializing him more and treating him more like a "normal" child than a child with special needs. sigh....
so we all headed out for some trick-or-treating, and the first few houses were quaint. then we got to the street with spooky decorations and haunted houses. orion became weary and was holding onto dad tight with clenching fingers! it finally got to him when he saw a talking and singing skeleton, and down came the tears. awwwww after that, we just skipped most houses and made our way back to daniel's. orion dug through their candy bowl and kept taking out tootsie pops and handing them out to everyone. there was even one dad there who kept asking for a tootsie pop, but orion wouldn't give him one. i wasn't paying attention, but the man then picked up orion from under his arms!!!! i freaked!!! i was like, "you're not supposed to pick him up like that!!!" in my mind, i was thinking, what stranger picks up someone else's kid? don't they remember toddlers have stranger anxiety? anyway, the man quickly apologized and said he should have asked first. then i explained his body is recovering from surgery, and that was that. it was great to see orion did not feel any pain though, but wow, it sure caught me by surprise.
anyhow, we are home now and orion is safe in bed. he is pooped!!! i hope he sleeps well tonight - and in his own bed - so mama can get some good sleep too.
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!