Little Bit O' Babble

What do you do for entertainment when you're stuck at home with a sick little Kamryn? You turn on the video camera and let Owen entertain you... and he will oblige! Here is a little bit of babble from our little man.


This is my favorite face.

Owen's AMAZING Year

You are AMAZING Mr. Owen. Thank you for being such a strong boy this year and making our lives wonderful! HAPPY BIRTHDAY!!

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Birthday Boy

Owen started his birthday at 4am with a case of the pukes. I'm hoping that it's random and not a side effect of the chemo. Owen finally finished his rituximab and his oxygen is back to 80 on 1/2 liter. Let me just say that I'm not looking forward to coming back on the 11th for dose #2. We're waiting for cardiology to show up this morning and discharge us. Is it too much to ask for them to come to work at 5am... we want to go home!
We'll have better birthday pictures later with cake and presents. That's after I take Kamryn to the pediatrician because she's now puking with her nasty fevers and hasn't eating in three days. She's such a trooper and doesn't complain about how she feels on the phone, but instead asks how Owen is feeling. Such a sweet sister... can't wait to give her some mommy cuddles to help make her feel better soon.

Thank you for all your prayers.. hopefully these treatments will work so Owen can get a heart.

PRAY for Owen!!

It looks like we're not going home tonight :(. Owen had a severe reaction to the rituximab. Around 6:00 the nurse and I were saying how great he was doing. He had just woken up and was sitting up in his crib playing. I looked over at him and he started shaking uncontrollably and chattering his teeth. I hollered at the nurse and turned the lights on to see his lips blue. His sats started to drop into the low 60's, then the 50's and then the 40's... everytime it dropped, I would crank up his Oxygen. No luck. We finally had to put a face mask on and increase his oxygen to 8liters to get him stable. Meanwhile... I'm holding him with loads of blankets trying to calm him down and get him to stop shivering. The Dr.'s gave him iv benedryl and hydracordizone to help relax his lungs. After about an hour, his sats increased and he stopped shivering. Poor guy. Needless to say, we stopped his rituximab and we will start again after he has a break.

We'll be spending a wonderfully restless night in ICU. PRAY that he doesn't have any other reactions and that he will finish this dose that he needs.

Waiting in ICU

Kamryn woke up last night sporting an aweful fever... poor girl. Looking at the bright side (per her), she got to miss another day of school. My mom and dad were able to take care of her for the day while I brought Mr. Owen to the hospital. Thankfully, Kamryn doesn't have any other symptoms... just a nasty virus. The cure... lots of yummy ginger ale, gatorade and SLEEP!

Meanwhile... I got Owen to the hospital at noon and they didn't have a room for him in ICU yet. Instead of keeping him in the germy admitting area, they brought us back to the ICU holding room where they do dialysis and such. We hung out with our own nurse and Owen showed off as usual. All his nurses, cardiologists, and PCT's were walking by and they'd stop to chat. Some brought him back toys from the child life room and he just ate the cardboard wrappers. We passed the time and three hours later... our room was ready.
Owen's IV went in without a hitch... a little tear was shed, but ONLY one. Before they give him the rituximab he got a dose of benadryl and tylenol (just in case). This is what he did five minutes later....

... and ever since. He is sleeping so peacefully. The nurse is hovering as she watches for reactions (itching, rashes, low blood pressure)... he'll get the IV drip over six hours. Dr. Stock dropped in to say hi and to ask if we wanted to go home tonight?? Um... YEAH! As long as Mr. Owen behaves himself and finishes the treatment without any issues... we can go home tonight. It might be midnight or later... but we get to sleep in our own beds and wake up at home on Owen's birthday!! We're praying for no reactions and that he doesn't catch sissy's nasty virus... or else they'll keep him here forever.

Rituximab

We just got word from Cardiology that Owen starts his Rituximab (chemo) tomorrow. Still not sure of the time, but I'm sitting by the phone. We'll be back at PCH in ICU... hopefully for only a day. Dr. Stock said we'll do a 12 hour drip.. maybe a little less. Then we heard the list of side effect... yucko. I'm hoping to get in and outta there. Pray that things go smoothly, Owen doesn't get sick and he can enjoy his first birthday on Wednesday (at home)!

Two Sleepy Kids

Doesn't that sound fantastic?? I wish they were just sleeping and I could take the grouchy bug away from them both. Kamryn hasn't eaten in two days and although she says her tummy hurts... she doesn't have any other symptoms. UNTIL TODAY... she has spiked two little fevers and then chokes down her chewable tylenol. She'll sleep it off and be fine tomorrow ... this lil' girl NEVER stays sick.
Mr. Owen has had teeny-tiny fevers (if they even qualify) at about 100 degrees. He's just crabby and wants cuddles between naps. I'm not complaining because with both kids in bed I am getting a bazillion things done around the house. The hardest part is keeping these two AWAY from eachother. Whatever Kamryn has... Owen doesn' t need. At first I though the low grade fevers are a side effect of the IVIG?? I dunno.

I'm going to go get my laundry on and maybe even bake some poppyseed bread... doesn't that sound DELICIOUS?!

A New Look

I know it's not spring yet, but it totally feels lke it. The weather has been in the high 70's the last few weeks and I wonder if winter is gone for good? So, in the spirit of the season and beautiful temps... I decided to redesign our blog. I think it shouts SPRING! Now excuse me while I go to bed, because tomorrow we are spending the entire day outdoors.

We're HOME!

Owen was discharged at 10am this morning .. guess they wanted our room because it usually takes them forever to get discharge papers done. I'm not complaining. We are exhausted and desperatly need sleep... but, Mr. Owen decided he was too excited to be home and wants to play with every single toy he owns. Then it was time to pick up Kamryn from school and the minute he saw her... he was in HEAVEN! Giggles, spitting, snorting and more giggles... and she didn't even have to work for it. Kamryn was just as excited to see her little man. She even used it as an excuse to get out of homework... "Mom, I don't want to work on my homework, I've done work ALL day... I haven't seen Owen in FOUR DAYS! Don't you think Owen is MORE important than HOMEWORK???" Then I gave in.
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Here are Owen's birthday invitations... I haven't had a chance to put them in the mail yet... BUT I WILL... tomorrow perhaps. Everyone is invited... come one, come all!! If you're sick, have been exposed to being sick, or just think you might want to get sick in the near future... we love you, but send your wishes to Owen another way :). If you need detailed instructions on the location (I didn't put them on this one for the whole WORLD to see)... just email me at andreanicolesimmons@hotmail.com.

Now I have to plan the party... NOT my favorite thing to do. Thankfully I have great blogging friends who are SUPER creative and I just borrow their ideas... ahem... Jamie I am stealing your ideas from Trent's party!
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Ok... off to bed.

Spooky Eyes

Owen continues to be pumped with immunoglobulin. His only reactions so far is that he gets sweaty and his eyes look something aweful! It looks like somone pushed them into his head! They are sunk into his skull and they have DARK circles around them... this is not from lack of sleeping. The cardiologists were so afraid that he wouldn't be able to handle the amount of fluid they have to put into his veins SO they used IV diuretics to get the fluid off. He was REALLY negative this morning ... I'm pretty sure I raised a few red flags yesterday when I said he was PEEING an aweful lot! They believed me this morning when they saw his scary, monster eyes (ok... they're not that bad!)
They stopped the IV diuretics and he's suppsed to start looking more like Mr. Owen soon. But before he does... he had to make a monster face to go with his spooky eyes.

We're hoping that Mr. Owen will behave himself tonight and tomorrow morning so that we can go home. We'll be back before next weeks end for more treatments, needles and hopefully (once again) our own bathroom!

PICU Life and Surprise Visitors

As you can see... I have settled in to PICU life. Here is my space. I blog here, sleep here, eat here and Mr. Owen watches me very SERIOUSLY from his crib to make sure I don't leave the room! Oh... unless I'm replaced by his adorable nurses, which he then acts as if I don't exist because he's male.

These are Mr. Owen's sleeping quarters and also the view from "my" space. He's been staring out the glass wall all day.... as soon as someone walks by, he puts up his arm and waves. Which is then followed by that person coming into his room and he greets them with the most serious of expressions until they EARN his smile.

We had a WONDERFUL suprise this evening when the Holman's dropped in to visit. I went to high school with their son Lance (we won't discuss how long ago that was)! Their grandson, Trey (5), also has HLHS and so we have reunited through blogging. They were in town from Cedar City on business and took the time to surprise us! They met Mr. Owen and it made my night. THANKS for coming! Mr. Owen wasn't interested in smiling much today.

The IVIG is still dripping away. We have until 4am for this first dose to run out and then we go onto another 18hour drip. His face is a bit puffy due to all the fluid being pumped into him. We've been giving his lots of diuretics today to keep the fluid off and we've gone through a whole pack of Pampers today... glad I'm not paying for those!

Carson played with Owen a bit this afternoon while I went home and showered. Why does a shower feel SO good when you've been in the hospital? Anyway.. I got to spend time with Kamryn, take an amazing shower and now I'm going to SLEEP. If there is such a thing in ICU -- BEEP... BEEP... BEEP... BEEP...

A Beautiful Morning

I finally figured out how to use the hospitals internet connection so I can upload pictures from the laptop. This is Mr. Owen right before his cath yesterday... could it be the same baby as last night???
Owen KNEW he had been in this cath lab before... look at his face... poor guy.

The cath went as planned. They were able to coil off at least 1/2 of the large collateral that they meant to tackle. Then they ballooned open the narrowing from the Glenn site. In the cath lab, it looked significantly better... the echo this morning showed the same. Dr. Lamers (cath cardiologist) said that Owen's right ventricle should get the blood, squeeze it, then shoot it off into the body... Mr. Owen likes to do things his way. His right ventricle takes the blood, squeezes it ever so lightly and then it regurgitates back into the atrium.. thanks to his leaky tricuspid valve.. the leftovers go to the body. We are all amazed that he is so pink, chunky and strong on the outside!

We finally hit the sack at midnight. Owen tossed and turned, but we got enough sleep. Have I mentioned that we got the best PICU room? They are all private rooms with a little bed so I never have to leave his side.. but we have our own bathroom! That means I don't have to wake up at 3am and wander the halls of the hospital looking for a bathroom. I'm finding joys in the little things here.

Owen was up at 5am and ate 2 cups of ice chips and a whole carton of milk!! Back to sleep until his 8am echo and now he's been snoozing ever since. He's currently getting his IVIG treatments over an 18 hour drip. Lets see... that puts us at 4am tomorrow he'll be done. Or so I thought...

Looks like he needs another 18 hour dose. Maybe we'll be home on Thursday?

I spoke with the cardiologist on call last night and he said the treatments are every SEVEN days.... NOT 21 days. BUMMER. If that's correct, then we'll be back here next week again. Then home... then back 20 days later.. then 7 days after that and then on day 44 we'll check his antibody levels. The cycle continues until he gets a heart....

Good thing we like it here.

No Good Very Bad Day!

Poor Mr. Owen.

It has been a BAD day.

Owen came out of his cath at around 4 and he was still waking up when we saw him in the PICU. He felt just aweful! Our hearts were broken as he cried and cried and couldn't be held. After a cath, he has to lay flat on his back with his legs straight for SIX hours! We had to burrito wrap his legs down and use a little weight... he was less than amused with our creativity.

Daddy left around 7 to go take care of Kamryn. Then Owen thought it'd be a good idea to get rid of the IV in his left foot... BLOOD EVERYWHERE!!

So the nurse tried to put another IV in... no luck. The IV team came in around 10pm and woke him up with LIGHTS and TORTURE... but Mr. Owen didn't even budge. Now he has a BOOT on his foot, surrounded with a whole roll of tape and a sock on top... NO WAY is he getting that IV out.

It is now about 11pm... we took off the tape that was torturing his neck and groin.

Gotta run... BLOOD EVERYWHERE! Another IV OUT!! Pray for my sanity and to get through this night sleeping in the PICU bed (or wooden couch with a pad and a sheet on top).

Cath Time

What a LONG morning!!! Owen was up at 5, at the hospital by 9 and in the cath lab by noon. He was his happy self all morning long and doesn't mind an empty tummy. They're going to balloon open the Glenn narrowing first. Then they are going to try to coil off the large collateral. He's been in the cath lab for about 3 hours now and they're not even close to finishing.

I wish these procedures got easier... BUT... they just get harder! It's so difficult to watch him on the cath table crying as the anesthesiologist uses the happy gas on him. NOT HAPPY GAS!! Then he goes limp. We know he's in good hands and thanks to Grandpa Todd for the blessing this morning.

This is Owen's 4th cath in the last 12 months. Every one has a different story and we always get bad news. We're praying that this one goes smoothly and that he recovers quickly. We'll be in ICU for a few days while Owen gets his IVIG treatments. I have my laptop so I will keep things updated and upload some pics later today.

Thanks for the prayers... keep them coming!

Goodbye Spaghetti Legs

I can't even begin to tell you how HAPPY we are that Owen discovered that his legs can be used for things other than kicking and picking up toys. For MONTHS we have worked with his therapists trying to convince Owen to put weight in his legs. He usually just picks his little legs up in the air in front of him (which I have to give kuddos for his amazing ab work) or tries to do the splits until he is sitting. Our countless failed attempts and creativity in getting Owen to stand up have finally been rewarded. Farewell spaghetti legs... forever. On an entirely different subject....
I asked Kamryn to watch Owen for a second while I ran to the laundry room... here is how she keeps Mr. Owen so happy!! It was too funny not to get on video....

Who doesn't LOVE a little whipped cream straight from the can???

Another Cath and Antibody Treatments

I knew things were going to move quickly with Owen's treatments but, I didn't expect to get a call today telling us everything is scheduled THIS Monday! How's that for short notice?

Owen's cardiac cath is scheduled for early afternoon on Monday. The plan is to balloon open the narrowing at his Glenn site and coil off more collaterals. He will start his IVIG (immuno globulin) treatments on Monday and they will drip them through his IV for 2 days. Then, he'll have to be given IV diuretics (apparently Owen doesn't do well with TOO much fluid). We PRAY things go smoothly and we can come home after a few days. Owen's Birthday is the 28th... we don't want to celebrate in ICU.

Just 21 days after his IVIG treatments, he will get his Rituxin (chemo) treatments. So, back to the PICU we shall go.... I'm really not sure how long this stay will be... Dr. Stock didn't have the "protocol" in front of him at the time. Then... we'll go back in a number of days later (again, Dr. Stock didn't have the info with him)...and start the WHOLE process all over again.

The good news is that we can do his cath and treatments at Phoenix Children's instead of traveling back and forth to LA (which would be crazy expensive).

After BOTH treatments are complete, we will do more bloodwork to check his antibody levels. PRAY that this ALL works!! I just hate seeing him have to go through SO much. In true Owen spirit... he will FIGHT through it all with his SMILES and GIGGLES!! And that's what helps us get through it all too!

What's SO Funny?

All these giggles were for Kamryn... all she said was "I'll get it!"

Mr. Owen... What's SO Funny?? I love that he suddenly stops and looks SO serious at the end of the video. That was just the beginning.. he laughed and laughed for about 10 minutes until I thought he would pass out!

Pajama Party

And I thought 7 girls wouldn't be enough??! My goodness... girls are SILLY and LOUD.. just as they should be! Kamryn's pajama party was fun, simple and full of giggles.

The Cake

We had daddy start with helping make the cake... then he ended up doing the whole thing! The "bodies" on the cake are Ho-Ho's... the girls thought it was DELICIOUS!

The Craft

We were going to decorate pillowcases, then slipper socks... but decided on little "treasure" boxes to decorate instead.

The Favors
Gotta LOVE Target's $1 bin...Pedicure set, nail polish set and lip gloss! The GIRLS!I still can't believe our little girl is already NINE!

CLAPPING!

Mr. Owen FINALLY claps! You have no idea how many silly things I have done to get him to smack those hands together. He's pretty thrilled with himself.....

Hopefully you focused on his contagious giggle and not on the diaper box, santa feet, sock, papers, and toy tub in the background. Do you blame me for not picking up when I have the choice of playing with this crazy guy, or cleaning house???

Cardiology Update

First of all HAPPY NEW YEAR!! We celebrated the new year by staying up until 10pm (we're getting old) and watching the ball drop over Times Sqaure. The new year always starts off with Kamryn's Birthday... it's a great way to start each new year! Although 2008 was a tough one... we are BLESSED!! December was one of Owen's best months yet... he's got more energy, he's eating a little more, and he's just never looked better!

We had our first cardiology appointment in 2009 today. Dr. Stock agreed that Owen looks better than he has yet. He's gaining weight (20lbs 7oz), his color looks good and his breathing is just a (tiny bit) less labored. Carson and I weaned Owen off his O2 for the day yesterday, but as the day went on, his sats went down. He went from the high 80's to the low 70's without O2, but it took a good 8 hours. We think he's ready to be weaned, just at a slower rate. Today he is at 1/4 liter and his sats are in the low 80's. I'll take him down to 1/8 liter tomorrow and we'll go from there. It looks like we may say goodbye to those darn oxygen tubes SOON... let's just hope for that!

And you thought I was done... no way! Dr. Stock just called and said that he spoke with Dr. Halnon from UCLA. Owen's antigens are HIGHLY SENSITIVE... not what we want for transplant. He will first get some IVIG treatments ... click on IVIG to read about it... it's an iv administered immunoglobulin. Then they are also going to start him on some rituximab... click on Rituximab to read about it... it's also administered through iv and is a type of chemo. We're not sure exactly when he'll get his treatments, but he will be admitted to the PICU ... hopefully in Arizona... and we PRAY that they work!!! Neither treatment is highly successful... the rituximab can cause immunosuppression... and I can't imagine he'll feel very good afterwards. We should hear back from cardiology by next week with a timeline of when to start these treatments. I also pulled THIS LINK from our heart friend Lindsay's blog because she too is going through pretty much the SAME thing as Owen. It explains everything in a bit more detail.

We are fortunate that Owen is home and doing so well that he doesn't NEED the heart at this time. Up until now, time has been on our side and we will get his treatments.. PRAY they do some good...and when it's time that he NEEDS a heart, he'll be in the best condition to get one. We know it's all out of our hands... we are just along for the journey!!

HAPPY BIRTHDAY KAMRYN!

Kamryn turned NINE today... and what an amazing 9 years it has been!!! The time has flown by so quickly and I wish I could SLOW it down. The worst part is... she's halfway to 18...YIKES! She has been a dream daughter... PERFECT in everyway!

The day was sweet and simple. We had choco-chippy, mickey mouse pancakes for breakfast. Opened presents. Then I gave her a mani/pedi and did her hair in an up-do.... gotta pamper the birthday girl! Kamryn picked where she wanted to have her birthday lunch... Joe's Crab Shack. This girl LOVES her shellfish.

Have you ever tried holding an (almost) one year old while trying to crack and eat crab?? Owen took every opportunity to smash his hands in the butter and eat the crab claws. Did we mention that he takes after his sis and LOVES crab? The weather was GORGEOUS today... 70 degrees and just a little overcast.

Kamryn made her OWN birthday cake this year. It was DELICIOUS! We did a grown up family party with Grandpas and Grandmas tonight.... what are we going to do with ALL the gifts?!

To be continued next weekend... she's having a PAJAMA PARTY with her friends. Happy Birthday Kamryn! WE LOVE YOU!