Thursday, April 24, 2008
today was my first time giving him a post-hospital bath in his bathtub. as most of you know, orion cannot be held under his arms for 8 long weeks post-op. the last time we did this, he was barely 3 months old, so it wasn't a big deal for us. now that he is nearly an 18 pound toddler (and an active one at that), it's definitely hard to get him around. the scooping i got used to, but try giving this kid a bath in a tub! i picked him up so i could wash his bottom, and he was so slippery from the water, he slipped a few inches down (though i was still holding him), and that feeling gave him a little scare. he started crying, and i thought maybe i hurt him, but his smiling picked up soon after. i needed bo's help to clean orion and get him dry, so tomorrow, i'll be sure to have some help.
as for orion himself, he is so happy to be home and is back to his usual cheery self. laughing, pointing, scooting, clapping, smiling, screaming, dadada-ing, mamama-ing, being messy and being so affectionate and loving. this is the boy we missed and are so happy to have back.
we love you orion!!!
leaving LPCH and hanging out on the "big heart" in the walkway up to the hospital
out to lunch at a vegetarian restaurant near our new apartment. yum!
returning home from our walk
just a few of his toys...
we have an appointment with our pediatrician tomorrow and a follow-up with cardiology on monday. will definitely update with info from cardiology appointment.
Tuesday, April 22, 2008
Sunday, April 20, 2008
orion and i had some great wagon rides, play time in the play room, good sleep time in our room, he finally ate something new that he liked (spaghetti and meatballs from olive garden - thanks grandma!), and some good physical therapy practice. this morning when doctors did rounds, it seems on the weekend maybe they are more forgiving (and forgetful?). i had to clarify a lot of things and also make requests, such as weaning orion off of oxygen slowly because it didn't work when they tried to wean him off in half a day. their plan was to try getting him off oxygen completely today, and i said, "oh, no no, not again." so, i'm glad i was here, awake, to catch them. orion's doing awesome, he's down to 1/2 liter and still in the early to mid 90s range. tomorrow they will bring him down to 1/4, and maybe we'll go home on tuesday or wednesday. yay!!!
bo is in sf packing up the truck again with the rest of the stuff. we'll definitely need help moving the couch, so that will be saved for another trip. once we are discharged, i am in charge of unpacking and cleaning the sf apt. we do plan on painting our new place, so if anyone has ideas, let us know! we want to do something creative with orion's room, fill it with happiness and love, we're not really sure what we're going to do yet. i do want to have one wall be painted with chalkboard paint though (just the bottom half), wouldn't that be cool? i told bo, after this, no more moving!!! i promised him i wouldn't look at any more apts to move. i also said we can't move out of this apt until all our kids are born :)
signing off to take a nap.
Saturday, April 19, 2008
doctors dropped his lasix from three times to two times a day, and he is still on 3/4 liter oxygen. they say we may be discharged monday or tuesday??? hopefully soon so we can start packing!
bo also posted on his personal blog. be sure to check it out :)
Friday, April 18, 2008
tomorrow, bo is getting up early to head up to sf to show the apt. i usually get to nap in the morning, but not tomorrow. so i am going to bed early tonight.
i don't think we'll be getting discharged this weekend. maybe early next week!
oh by the way, we are working with SSI, Supplemental Security Income to get some financial help for orion. though i haven't been the one in contact, bo says that kids who have congenital heart defects are eligible. so you moms and dads who are reading this, call your financial advisor or social worker at your hospital and ask them for more info on SSI. extra cash can always help pay for even the small things like diapers and formula :)
Thursday, April 17, 2008
orion's been extra happy today. not sure if it's because he's getting too comfortable here, or maybe he knows we might be going home soon???
in reply to the mannings comment, during physical activity, if orion's sats drop, we just lay him down in our lap, just easing the pressure off his body so he could relax. that will usually bring up the levels again. and if you're gonna be here in may, we'll be moved to mountain view by then! but let's definitely meet up, we wanna see little mason in action!
not much else to report today. bo and i were both able to take a couple of naps throughout the day. i did the laundry also and really we should be packing up our room soon. lisa's right, we are too comfortable! we have tons of clothes here, a million toys, computer equipment, and snacks and toys. our room here is definitely lived in. and just to clarify, some of my friends (ahem, yuri) didn't take the "living in the hospital" comment to seriousness. yes people, we really do live in the hospital! rarely do we EVER leave. we sleep here every night, we are next to orion 24 hours a day, we have a private room with private shower and bed so we're always squeaky clean and somewhat well-rested. we are so busy with orion we hardly have time to grab food to eat, so we usually end up eating orion's meal that he doesn't finish (which doesn't taste that bad). but in reality, we can't wait to get back home and have our normal routine again. i'm sure orion misses the park and watching all the other kids run around. and we can't wait to sleep peacefully without the monitors beeping!!! that sound is burned into our brains, it's pretty much obsolete when it's dinging.
fun in my chair
trying to put my sock on by myself
human sacrifice - see all the animals attacking the farmer? yes, this is what bo is teaching his son...
drinking from a big boy cup! still hasn't learned that when you drink through a straw, the cup needs to stay low
WebMD Article: Smoking Before Pregnancy or in Early Pregnancy Could Increase Congenital Heart Defects
Smoking Before Pregnancy or in Early Pregnancy Could Increase Congenital Heart Defects
Wednesday, April 16, 2008
so nice of debbie to stop by while doing some outside office work. she is a fellow heart mom we met through one of the heart groups we are a part of. she even brought a little surprise for orion! his very first set of legos :) yay! thanks debbie!
yashir and maz stopped by again to check on the little guy too. very nice of them, especially since yashir was post-call and maz is always busy studying. we always love company from friends and family.
not much has changed today, except they dropped his dose of diuril by half and he is down to 3/4 liter of oxygen (before, he was on 1 liter). his sats are still pretty stable in the mid-90s so hopefully he will continue this progress.
bo has been up all night and day (literally) trying to finish up projects. i was lucky to get some sleep last night and a nap this afternoon, so i'm pretty energized to take care of orion. our special hot chocolate and coffee combo drink also helps :) tina, i have yet to add the soy, i think i'm too anxious to drink it i never get around to adding milk. next time, next time. i don't drink these as much (i was trying to keep it to a max of 3 cups a day). the nourishment center is on the 2nd floor in CVICU, and i feel like such a fool to go down there just for my chocolate coffee fix. but on occasion, bo and i really need a caffeine kick, so i'll sneak down there, hoping no nurses will see us and ban us from the nourishment center. most of the time though, they just ask how orion's doing. i'm sure no one will honestly kick us out of there. i even considered bringing our coffee maker to keep in our room, but maybe that's just too much.
other than that, orion's doing great. he's so much happier with his chest tube out, and he's ready to rock and roll. he's already back to scooting on his butt, and he's so motivated and determined to get back to his physical self again. this morning during PT time, he spent some time sitting in my lap and was so excited to get to his new toys, he stood up on his own to get to them. of course, his sats went down fast, so i had to bring him back down to sitting so he wouldn't use up so much of his energy. it's definitely hard to keep a toddler from wanting to roam around and go after what he wants. hoepfully in time, he will balance out.
food-wise, i think he's getting tired of hospital food. same meals over and over, i know how he feels! so i need to come up with another plan and find him some other dishes to munch on. or, just get discharged soon so we can eat normal food at home :)
i also posted our SF apartment on craigslist. wow, what a response! hopefully one person will be interested and a be a good match for our little neighborhood so we can get that over with. bo is heading up there saturday morning to show it, and hopefully he can pack up some things to bring back down to the peninsula. we are definitely excited to move and be back down here. we'll be closer to our wonderful friends kathy and orion's girlfriend elizabeth, and we'll be closer to chris and sara too. hooray for babysitters! ;)
i will leave you with this sweet photo of orion taking his daytime nap right now.
Tuesday, April 15, 2008
2. we call it "home" or "house"
earlier today, bo said "orion did that when i got home" and about two minutes ago, i said "something in this house is making me itchy!"
that's when i knew we've been here toooooooo loooooooong....
we are still waiting to hear from dr. reddy if he wants orion to be cathed during this hospital stay or later.
today, orion spent some time with the physical therapist at the LPCH gym practicing standing and sitting. i was not able to make it since i was out running errands, but bo said he tired very easily. he said all the exertion and effort orion expended also uses up more oxygen in blood, hence the saturation levels going down.
interestingly on another note, i have been reading articles about heart kids and their development. it seems there is a connection between heart kids and math problems. i wonder if it's the lack of oxygen? there are also articles talking about delayed skills, which i also think could have to do with lower oxygen levels. i don't know, just stuff on the back of my mind.
tomorrow, doctors are going to start weaning orion off of the oxygen to see how he does. they will also begin to wean him off diuretics. can't wait for that, we change way too many diapers through the day ;)
Monday, April 14, 2008
i also forgot to mention, we won't be going home until orion is up and walking around like he used to! i know it will take several more days with physical therapy to get him back into shape, so maybe we'll be here for another week.
i don't know what's going on with his chest tube, there is still drainage, but we know for a fact it is much less than before this weekend.
onto other news, we found a new apartment! bo and i both agreed it was most beneficial to move back to the peninsula area to be close to the hospital again. after orion's seizures, we realized we would not be comfortable going to any other hospital other than LPCH. we just love the doctors here so much and appreciate their care and quick judgments for orion. we are moving back to mountain view, hopefully it won't be stinky of rotten food in the basement like our last mountain view place! haha. it's in a great neighborhood next to two parks within a couple of blocks, and the library is also within walking distance. it's a pretty cute town, mellow and quiet with lots of cute shops and restaurants on the main road. the street we will be living on is a residential street with rows of pretty craftsman-like cottages. we are excited, but we are also dreading hauling all of our crazy stuff down, especially at this time. we're aiming to move before the end of the month, and we've got lots of friends and family offering their help. we love our close-knit family of support so much!!
orion is sound asleep now, and i was unable to nap today. i am going to finish my dinner - vegetarian fantasy pizza from maldonado's pizzeria. one of the best pizzas ever!!!
on to other happy things, orion's been his old self again. the last several days have been tiring for us, with all of his energy, playfulness, and wanting to eat all the time. with bo busy with work too, neither of us get much sleep. orion is definitely happy to eat again though. after a week of having a breathing tube in and not eating anything at all, he absolutely loves hospital food! this kid is eating everything in sight, even foods he's hated in the past. favorites now are chicken noodle soup, chicken drummettes, french fries, tater tots, fish sticks, scrambled eggs, french toast, pancakes, and even jello! i even snuck in some oreos and soda, stuff we don't even dare keep in our kitchen. it's great to see a smiling kid again with oreo black teeth, haha :)
we have also been taking orion to the playroom almost everyday. here, he can meet other kids who are also hooked up to IVs and have chest tubes, so he can see that he's not the only kid with tubes and wires. they have a ton of toys and fun projects daily. yesterday, we all built birdhouses. even kathy and elizabeth came for a visit and made birdhouses too. of course bo outdid us all and made his fancy, you know, bo-like. he definitely likes to "bo" things up.
when we take him to the playroom, he gets to ride in a wagon. so we bring EVERYTHING. chest tube drainage, portable pulse/ox machine so we can see his heart rate and oxygen saturation levels, an oxygen tank, plus snacks and a camera. we ride round and round on the floor, sometimes stopping for coffee for mom and dad, then we head to either preschool or the playroom. no matter where we go, he has a blast in that wagon. when we get back to our room, he begs for more.
overall, he's doing great. his anti-seizure meds are keeping them under control, he hasn't had one since his last episode more than a week ago. oh yeah, the other day, he pulled his IV out! what a monster! it was in his neck, and boy, was he tired of having that thing there. after coming back from a wagon ride, i noticed it had been pulled out, but not completely. i went to tell a nurse, and she literally ran to our room (no running ever allowed in hospital, it makes people think someone is dying. ask bo, he got in trouble from one of the cardiologists haha). at that time, the nurse didn't think it was pulled out, so they taped it back up. by morning though, our day nurse said it was not in the vein anymore and the medicine and flush that was administered had leaked. when she pulled the tape off, it was very wet inside and also leaked onto the bed. orion definitely gets what he wants. so the nurse practitioner decided they will not put a new IV in since he's such a hard stick, so all meds became oral. he's been a happy camper since.
now, all we are waiting for is this last chest tube to come out. hopefully there will be no more drainage, and it can be taken out soon. we will probably be here for another day or two after it's out to make sure there are no complications with it. he is still on oxygen though, it seems his saturation levels are low when he's not on it. so we have a feeling he may go home with oxygen, but not really sure yet.
we can't wait to go home. we miss our bed. orion misses his toys and buggy rides. we still need to work on his strengthening muscles, but i have a feeling he will catch up fast. once he sees our wood floors again, he'll be back to butt-scooting in no time. i miss home-cooked food, and i miss cooking! thanks to everyone for your thoughts and prayers, they are working!!! please continue your prayers that there will be no further complications and orion's heart, body and mind are happy and healthy :)
Friday, April 11, 2008
We haven't blogged lately, if you know us well that's usually because Orion's doing well and we got our hands full 24/7... and he has been doing good. After the surgery O was so small from all the diuretics that you could make out his every bone. His eyes were sunken in and glazed over from all his meds. Check out the pictures of him now! He has been getting up and getting stronger each day. Each day getting fatter and happier, still has a problem sleeping more than 20 mins (he so traumatized his body wont let him enter deep sleep), but over the past few days we have gotten so many smiles, giggles, and goofyness, we've almost forgotten all the hardships we've faced in the past two weeks.
Then came this morning when the doctors did their rounds. We've been aware for quite sometime now that one of his chest tubes, (his only chest tube right now, the one we are waiting on to go home) his left plural tube, has been draining post-op for almost two weeks now. It hasn't slowed down, in fact it's daily drainage volume has increased more and more. Orion's diuretics keep increasing but the drainage has not slowed down.
This weekend the team hear will be watching the drainage very carefully. Orion's diuretics have been adjusted put on the maximum dosage, short of killing his kidneys, to see if they can get all the fluid out. It's a situation in which, the excess fluid can cause the RA pressures to be high, and when the RA pressure is high it causes excess fluid to collect. The plan is to relieve fluid with IV diuretics, which will in turn relieve RA pressure, which will in turn relieve fluid.
We are praying O's RA pressures go down and this is just a prolonged immune response from the surgery two weeks ago. We hope his fluid levels this weekend improve and his heart relaxes. If the chest tube drainage remains high through the weekend, Orion will go into the CathLab, for the fourth time in a little over a year on Monday or Tuesday.
They will go into the CathLab with the concern that the RA pressure is (once again) high, the original problem that we came into clinic with. O's repair of the tricuspid valve and the placement of a new 19mm (yeah almost 3/4 inch) pulmonary valve in theory should have relieved the pressure, at least enough to keep from his body from causing effusion into his lung. The RA pressures post-op were great and remained low for a while, so they decided to take out his "RA line," this line was a little probe that stuck into his Right Atrium and measured pressures directly. It has been a week since they took out that probe (they had to take it out in order to take out one of his more uncomfortable chest tubes, because if there is excess bleeding from taking out the RA line, the blood drains from the chest tube). The only real way to test the pressures inside his heart now is to go into the CathLab and do it through a cardiac catheterization. If the pressures are high they will either go into the O.R. and do a modified version of the Bi-Directional Glenn (SVC re-routed to the Pulmonary artery), or in the CathLab a balloon will be placed to open up the PFO in the artial wall to buy some time and do the Glenn later.
OH BTW TAWNY HAS A LOT OF HAPPY STUFF TO SAY check back later...
Sunday, April 06, 2008
We finally got a smile, the first time since a day before the surgery, more than a week ago. First it was with mom, blowing bubbles, then it was with all three of us reading his book. It was only for a little while but took our breaths away.
Saturday, April 05, 2008
it's already hard enough to be in the hospital, and it sucks even more when you're dealing with something that is based on theory and not having answers. our theme lately has been "neurologists are idiots." maybe we need to make shirts, haha. but, we are not totally serious on that thought. i think we are more frustrated because they can't give us any answers, and they only way to help orion right now is with medication. the only way to get rid of clotting in his brain is to give him an anti-coagulant, which would most likely be coumadin (that's what bo takes). but since he is post-op, he can't take that since it would cause too much bleeding. so orion is only on his usual aspirin, and this really isn't solving anything at all. they are working on controlling the symptoms by giving him anti-seizure meds, but it is too soon to treat the clots.
that said, you can imagine how tough it is to be here. cardiac-wise, he is doing amazingly great. if there were no neuro issues, we'd probably be home by now. it's so scary to think that there could be damage to his brain, but we try (really really hard) to think optimistically and have hope that he will develop around it and adapt.
at least he got one chest tube out today! that is another step closer to recovery. hopefully we can get the next tube out and orion will be so much more comfortable and will allow for him to move and start strengthening again.
he is sleeping right now, a very much needed nap after a long day of drugs, examining, and poking. he is getting another 24-hour EEG, and i can't stand sitting here watching the monitor. i really wish i could read these and figure out what's going on with orion's brain.
i apologize if this post is so disorganized. thoughts are everywhere right now, and today was a very emotional day. i'd say it's probably the hardest time of my life, and i haven't had much sleep. along with these events and rollercoasters, bo's best friend's dad passed away this morning. he was battling cancer for quite some time, and we are both very saddened. our thoughts and prayers are with his family. boy, today was an insane day.
other than orion's seizures, things are still pretty much the same. he loves his milk, he didn't start any finger foods today. he spent most of the day sleeping due to the medications he's on. he was more awake and alert tonight and played some with dad, and grandma came today! he still hasn't smiled yet, but he is crying more (with his very scratchy throat) and whining, which is a good sign of response. we miss him TERRIBLY. i spend most of my days looking back at old pictures, and in the back of my mind, i wonder if he will ever be that same happy, smiley boy. i know i should think positively and know he will be okay, but at the same time, it's always a possibility there can be brain damage that can affect his future. my heart breaks when i see his lost eyes, and it's very hard for me to sit in the room with him. i spent most of my day crying on the phone with friends and family and wondering why this was happening to our son, the happiest kid in the world. being here has made him so sad and i haven't seen his sweet spirit in a long time, it seems like forever since i've sensed happiness from him.
this is the hardest hospital stay i've ever experienced. it's "easier" to deal with physical issues because they have a very rigid, to-the-point, by-the-book fix for it. broken heart? easy. thrush? easy. well, broken heart isn't that easy, but you know what i mean. how do you handle neuro issues? bo and i can't stand this questionable state, it is so frustrating to talk with doctors and to figure out how to help orion. it's all a guessing game. and it sucks.
BUT, we do have to keep our spirits high and show orion he has strong parents. it's so easy for him to sense our stress and fear, so we both do our best to be strong for him. we just love him so much and can't wait to bring him home.
Friday, April 04, 2008
well as his pacer wires. They also had to put in another IV as a
secondary one in case the main one gets blocked. After 3 people tried
unsuccessfully to find veins, one doctor decided to place the IV in
his neck. This is the first time he's ever had one here, so I was
pretty sad watching him being sad :( once it was done, he was fine
He is definitely more awake and alert. He is a little bit more playful
and is more active. Last night, he was very weak in his left arm and
leg, but today showed major improvements on his movements. He was
joyfully kicking both feet again, and he was using his left hand to
hold his mini soccer ball and toss it. He loves playing catch with mom
Lately, he's only preferred to look to his left. He was struggling
turning his neck to the right and also looking to the right with his
eyes. The occupational therapist suggested to get him to practice
looking to the right, otherwise without practice, he will forget he
has the ability to do so. So we set up our chairs to sit on his right
side and showed him his toys, books and balloons. He has improved so
much! His left hand no longer tremors and he uses it just like he used
Orion also started bottle feeding today, and boy did he miss his
bottle! He ate like a champ, and even tried some Gerber puffs. He
chewed well, so he will start finger foods tomorrow. I know he will be
excited to have his fruits and veggies again.
Today was major hospital milestones! We are so happy to see Orion
progress positively and take steps toward going home. We are moving to
the step-down of CVICU, and hopefully the day after be moved to the
3rd floor 3 West - THE place to be. He has another EEG scheduled
tomorrow and a CT scan as well (don't know when that one is). If
things are looking good, we can be going home soon! All of his labs
and cultures have come back negative, and the only things left to take
out are the chest tubes. Cardiac-wise he is still looking great. Our
nurse took off the dressings of his sternum to air out so now he can
wear a cute gown again!
Very productive day today, and he ended it with a bang. All that milk
he ate needs to come out somehow, right? Our little boy :) he made an
insane mess, poop everywhere soaked down to the mattress! All his
lines got poopy, dressings poopy, blankets poopy. He got a nice
scrubbing and fell right to sleep after. He only napped for about 3
minutes because he got hungry again, so I fed him and he went right
back to sleep again. We CAN'T WAIT to bring our sweet messy boy home.
Wednesday, April 02, 2008
more comfortable and relaxed, he has been able to stay awake enough
for storytime and people watching.
This little kid is STARVING! He is trying to eat everything in sight,
but his stomach is not ready for food yet. Hopefully tonight they will
feed him some formula via NG tube.
He is still on anti-seizure meds, and our pediatrician called us and
said not to worry. He will most likely fully recover. We love news
like that! She is going to try to stop by and visit our little man. We
love our doctors here.
Orion is still on oxygen, just in case. I don't know how long he will
need it. The next steps are to remove chest tubes. Hopefully soon so
we can get him back on his feet (and butt) to get some exercise and
strengthen those muscles.
Our little guy is looking sweet and comfortable again. He's starting
to kick his strong legs again and still has that adoring look in his
eyes. Awww we love this boy :) we missed you Orion!!!
Orion's seizures continue, most of them are sub-clinical now (no physical movement, but showing up on EEG). The results of the CT scan show strokes in the right side of the brain. This area is controlling his left arm and foot. Since the seizures started, his left leg and arm have been weaker, but today he's been showing more strength. They have him on a few anti-seizure meds that are keeping them under control. I think he might be going home with one of them.
After speaking with Dr. Reddy and yashir, they reassured us that most kids who are in this situation post-op fully recover with no long-term effects. Since Orion is so young, he will most likely adapt and develop around it. It was very reassuring and comforting to hear that from a dr and our friend.
Orion will continue physical therapy when we go home and they will work on catching him back up and getting him past these hurdles. He will probably be set back in his physical development, but nothing too major or serious. He's also list a lot of weight, so the high-calorie diet will start all over again. *sigh*
We also unfortunately had to experience some careless decisions that were made by profesionals here which have brought us to tears and also staying on our toes. Fortunately it did not affect Orion negatively at all, so he was very very lucky. I know bo will talk about this day since he experienced it firsthand.
We also want to say BIG THANKS to everyone for their prayers, thoughts and love for our family. There are so many friends, family, and even people we've never met who are sending prayers our way to help heal our little boy. We thank you from the bottom of our hearts and appreciate the love from the community. It is so uplifting and reassures us that Orion WILL be okay.
Orion will be waking up soon. He has been sedated for 6 days now and he is finally off the meds that keep him sleepy. Tomorrow's goal is to get the breathing tube out which will make him more comfortable. That's one step closer to moving upstairs to step-down. Now that he is more awake, bo and I stay at bedside day and night. So we take turns taking naps so one of us is always next to him to hold his hand. He opened his eyes 4 times today with alert eyes, being able to track objects and focus on our faces. We can't wait until he's back to his old cheery self!
Will try to post more updates as often as we can. Thanks to all our friends and family who have comforted us, and especially anson, kathy, chris and sara for visiting and supplying us with yummy fuel!!