Research

I have spent some time on unos.org (national organ registry) this morning, looking at transplant data. Two of these hospitals are our potential transplant facilities.

In 2008, UCLA did 12 pediatric heart transplants... 3 in children 1-5 years of age... none of them with a congenital defect (like Owen). In fact, they haven't done a transplant on a child with HLHS since 2005.

I decided to look at Stanford Children's Hospital. In 2008, they did 15 pediatric heart transplants... 8 in children 1-5 years of age... 1 of those being HLHS and 6 others with CHD's post surgery.

I then expanded my search to Seattle Children's. In 2008, they did 14 pediatric heart transplants... 1 in a child 1-5... and that child happened to have HLHS.

On to Texas Children's for more info. In 2008, they did 16 pediatriac heart transplants... 6 in children 1-5 years of age... 3 of those with CHD's post surgery.

I found myself researching out of frustration. I have just had a pit in my stomach lately. Is it that I'm having second thoughts about UCLA? Is it the lack of communication I feel from the transplant team as of lately?

My concerns are valid. I need to know that communication is OPEN and consistent between myself and the transplant team at any facility we work with. We don't live closer than 6 hours from any transplant facility and I'm concerned about POST transplant when Owen is in Phoenix and something goes wrong. I need to know that the transplant team is available and Owen is a prioirty!

It's been over four weeks since I sent off Owen's bloodwork. We still haven't heard a peep from our cardiologist... with the exception of an email I sent two weeks ago and the reply was "nothing yet, hang tight".

I actually just left a message for our Phoenix transplant coordinator to call me so we can chat. I may have her send off Owen's medical records to Stanford. It can't hurt to check out their facility and transplant team as well... Right?

Gastroenterology

Today we had a visit with Owen's GI doc. His weight and height are "perfect" as far as they are concerned. BUT... he needs more calories, 1000 daily to be exact. THEN, don't forget he needs 1000 cc's of fluid a day. AND, make sure that he's getting enough electrolites out of those fluids. Got it. Thought you just said he looked "perfect"?

The nurse took his blood pressure, o2 sats, and then came the scale... yowza... Mr. Owen hates to get weighed! The nurse then said "OMG...he is SUCH a grouchy baby!"

Really??
Still haven't heard from UCLA. sigh.

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"AIMS TESTING IS SO AWESOME!!!"

The first words out of Kamryn's mouth when I picked her up from school today. Who would have thought that a week of testing would be so much fun??

14 Months & Making the Grades

I can't believe it's been 14 months since this silly little guy was born! Owen's personality is getting bigger each day. He constantly flashes his toothy grin and thinks of ways to make everyone around him laugh. His SMILE and LAUGH light up a room!!

Owen is weighing in at 21.5 lbs and 30". He's not crawling, walking, or bearing weight in his feet yet... but guess who mastered the BUTT SCOOT this week??! He loves to chatter... "ma-ma","da-da", "bubububobobo", "ah dun", "du-du-duk", "na na no no no", "AAAAHHHH", spitting, clicking his tongue, smacking his lips and OOOOOOOOOO how we LOVE the wet KISSES!! He loves to Clap, do "so big" and helps us do the motions to many songs. Owen has found a passion for food and will eat anything you put in front of him. If only a bite or two weren't so tiring... he'd probably eat everything in front of him too.

Our other little smarty pants just brought home her report card with all A's and 3's. It doesn't get any better than that! We are so proud of you Kamryn!! Each time Kamryn gets A's .. we reward her with a special day. Today we went to the mall and bought her some new clothes, ate on the patio at Cheesecake Factory for lunch, and now she's off at the movies. She continues to amaze us everyday!This is Mr. Owen getting EXCITED... he smiles big, then rolls his ankles, and screams!!!
And Kamryn being silly for the camera.... she's never been camera shy!
Now for a cardiac update...

We visited Dr. Stock (cardiologist) on Wednesday and of course, Owen impressed him with how well he's doing. Nothing new... Owen is in heart failure. We still don't have the antibody lab results back... it's only been three weeks!!! I've been in touch with UCLA and they are just waiting for results.

Owen's condition is so unpredictable. Two weeks ago, we were on the verge of admitting him permanently, placing him on iv Milrinone and listing him at top status for a heart. Today.. he's eating well, energetic and holding his own. We don't want to admit him and do the transplant too soon if he's doing okay at home...BUT, we also don't want to wait too long and have him digress to the point where we are running out of time.

Then there is the matter of his antibodies and those treatments. We PRAY that they are working and that the chemo is lowering them (even a little bit). My concern is that they are going to put the antibodies to sleep and then he'll get a heart and the antibodies will wake up and attack the heart. I doubt we have any other options at this point.

We're hoping that over the next few weeks, we'll get some answers. His lab results should be available soon (hopefully Monday). Then we'll head out to UCLA and get more answers. We'll be talking to LA about visiting a secondary transplant facility in either Seattle or Houston to decide when/how they do multiple transplant listings. We want to keep his donor pool as large as possible so that his chances of receiving his "perfect heart" is increased.

The reality of the situation hasn't really hit me yet. The idea of living alone, with Owen, in LA scares me silly. I can't imagine not having my rock of a husband or Kamryn to come home to each night. I don't know anyone in LA.. I don't know where I'll be living, any nurses or Dr.'s (although I'll get to know them quickly), or my way around the city. Oh.. and if a heart becomes available in Seattle.. we'll be jumping on lifeflight and moving to another city in a moments notice. On top of all those unecessary concerns, there is the medical unknown with Owen and his heart. It's all overwhelming, and so it hasn't really hit me yet, because I don't let it. Not yet.

Family Photos

Here they are!! We LOVE them!

A big thank you to Rachael Earl for taking time out of her busy life to capture these memories for us!
Visit http://www.mycameralovesyou.com/ .. she does great work and the music on her site ROCKS!

Sunday BBQ

Another beautiful day outdoors! After my last post we were thrilled with today's wind advisory. The weather was perfect, warm and breezy. We made last minute plans with my family to enjoy a little bbq at the park.
We laid blankets in the grass for Owen to play with his pinwheel (great in the wind) and play catch with all his balls. He loves to be outside!!

Kamryn played on the swings the entire time. Tomorrow is back to school and it will be a lonely day for me and Owen. We loved having sister home for an entire week of Spring Break. She is helpful, silly and always has great ideas to keep us busy.

Good thing there is only 8 more weeks of school until SUMMER break!!! :)

90's in March

It has been H-O-T outside. I watched Connor, Rylee and Tatum yesterday afternoon and thought it'd be a wonderful idea to take the NOISE outside to the park. Fifteen minutes later... we found ourselves walking home because it was just plain miserable outside. It was 90 degrees... in March!

It's that time of year in the valley of the sun. Time to crank up the AC, get out the swimwear, buy loads of sunblock, and get ready to live in the pool... the triple digits will be here soon! The best part of our summers is the HOT car... you can compare it to climbing into a preheated oven. BRING IT ON!

I don't have any new pictures to post because we were on the other side of the lens today. That's right... we finally got our family pictures done. We haven't done pictures since Owen was born. I always say "when he's tube free", "when we lose weight", "when the weather is better"... there's never going to be a perfect moment. The moment is now because we don't know what tomorrow might bring. Our clothes were mismatched, Owen had tape on his face (it was that or blue baby from lack of Oxygen), I spent an hour curling Kamryn's hair for it to become straight right before pictures... but I wouldn't change a thing!! I can't wait to see them. Thank you Rachael for capturing our family on camera today.. you are amazingly talented. You can check out her website or blog here. We'll post the pictures as soon as we have them.

As You Wish

I'm starting to get used to having Kamryn home... I might not send her back to school on Monday. We are having a lot of fun, and today has been the best. Since the weather seems to get warmer and warmer, we decided to have some indoor fun today. We went to Kamryn's favorite place... As You Wish.

My mom, Kamryn and Gigi

Kamryn picked out a monkey piggy-bank to paint for Owen. Have I mentioned that she absolutely adores her baby brother?? It's his very first piggy bank and very special!

I had the ingenious idea to paint Owen's hand so we could put his handprint on the bum of the monkey.... what was I thinking???

Owen laughed because the brush tickled his fingers and I only messed up twice. Here is the finished result.. we did it!
This is the front of Kamryn's monkey. I must add that nobody helped her.. she thought it up and painted this cute little guy all by herself. She doesn't get it from me. I love his little heart! Two hours of painting, 30 minutes chowing down at Fatburger (Kamryn favorite) and cooling off with some coldstone... this is what Owen looked like on the way home. Notice the chocolate ring around his mouth and the red bent straw... we wore him out!
Five minutes later... silence .. this is what I saw in my rear view mirror. Then I took a picture, while driving, don't try that at home!
The rest of the day is lazing around the house, cozied in our PJ's, watching barbie movies. I think we're going to get our feet wet tomorrow....

Spring Break

This week is Spring Break! Kamryn is out of school, Owen is thrilled to be with sissy all day, and we don't have any Dr. Appointments or hospitalizations....horray! We have plans to spend the majority of the week outdoors, away from germs, enjoying the last few weeks of cool temps. Of course, cool for us is 80-90 degrees!

After doing some spring cleaning this morning... we headed out to the "ducccccc-k" park. Owen tried the swing for the first time ever and turned blue over it. He holds his breath and screams when he's excited, and while entertaining, it doesn't do much good for his oxygen level.

The ducks were a hit, as they always are. Owen about jumped out of the stroller trying to catch the "du-du- duccckkkkk". I wonder what he'd do with one if he actually got his hands on it. The ducks just sit there as if they're begging for a challenge.

Owen's new favorite object... the straw. He must first bend it in half, then he will chew on it forever. Or until he drops it and squeals for another.

From the chub around his wrists, to his messy spiky hair, and the mouthful of sparkly white teeth... I just don't understand how there is a failing heart in there. Some days, I forget.

Today was one of them.
We have fun planned each day this week. Mostly spending time together, doing things that we usually take for granite. Doing things that we won't be able to do when Owen digresses to a point where he is admitted permanently, waiting for his heart. Until then... we will enjoy our walks outdoors, cuddling in bed watching cartoons, baking treats, swinging on the porch, listening to the constant laughter between Kamryn and Owen....

Road Trip to Tucson

We decided to take a last minute road trip to Tucson and visit Carson's Grandparents today. Kamryn and Owen wanted to say hello to their Great Grandpa Melvin and Great Grandma Emily. Due to medical issues, we haven't been able to visit with them in quite a while and they hadn't met Owen yet.

Connor, Rylee and Tatum were on their way down to Tucson for some spring break fun and so we all crashed in on Grandpa and Grandma together. The kids LOVED playing in the fabulous backyard!

Silly girls!

Kamryn, Owen and Great Grandma Emily... Owen really wants to get down and move!
Kamryn, Owen and Great Grandpa Melvin Carson, Owen, Grandpa Todd and Great Grandma Emily

I think it's wonderful that the kids have Great-Grandparent's living and doing well. We also had the chance to visit with some of Carson's aunts and uncles. It was well worth the 4 hours of driving to and from Tucson today!

Did I mention the fabulous weather we are having?? It's beautiful!

Saturday in the Park

The desert heat is coming sooner this year and before we know it, it'll be H-O-T!!! We have at least a few more weeks of spring temps... so why spend it indoors??

After the typical Saturday Costco run this morning. We lounged on the patio of Kona Grill and had ourselves a family lunch. Full bellied, we came home with the intention of taking in an afternoon nap.

We walked right into the house and right back out. It was too nice outside to spend time sleeping. We packed up the stroller and walked to the park.

We sprawled out on a blanket in the grass. Watched the bubble machine do the sticky work of blowing thousands of delightful bubbles. Then we broke out the oreo picnic. The first food that Owen ever tasted was that of a bite sized Oreo. Formula wouldn't suffice. He's addicted.

Here he is making his kissy face while trying to eat the whole 1/2 cookie he shoved into his mouth.
Kamryn wanted to play at the park while Owen watched with Envy. He really wants to get up and move! The Oreo was a great distraction.

Sissy took Owen for a trip down the slide... he loved it! This was after we disconnected his feeding pump, pulled the tube from his oxygen tank, and afterwards... hooked him right back up. It's a blessing he's not mobile yet. I don't know how we would do it?!

We have some serious fun planned this week for spring break! Owen is going to love having Kamryn home ALL week long!!

Excitement

This is the new face of EXCITEMENT...

Owen style!

Little of this n' that

I just couldn't resist taking this picture. I let him cry for an entire 20 seconds while I snapped a few pics. He was upset because I left him surrounded with his favorite toys while I walked 15 feet into the kitchen to draw up his morning meds. Shame on me.
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Since Kamryn was blessed with our aweful vision... she too gets to grow up wearing glasses. She got her first pair in Kindergarten and has since needed new prescriptions every 6 months! Too bad they weren't this adorable when I was little... I had some gigando plastic frames that took up their fair share of my face.

She picked out pink ones this time around and they are delightful!
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I had to include one more picture of Owen, really being Owen!

Dinnertime.

Jam Session

We cleaned house, Owen napped, we ate lunch... and then ...

Owen had a jam session! With his toes of course.

He's feeling much better now. He has learned to voice his opinion, and let's just say he knows what he wants.

Rule #1. Don't take anything out of his mouth... especially paper!

Rule #2. Don't take away any object that he is slobbering on, even if it's hazardous.

Rule #3. Don't walk away from him, not even if it's to use the restroom.

If you break one of his rules, he will roll his ankles, curl his fists and HOLLA!

Of course, a second later...

he forgives you!

Is the day over yet?

Have you ever had one of those days that you just wish would end?

After Owen's aweful lab experience this morning. I got a tip from a fellow heart mom.. thanks Caryn! She said she used another lab and they were great with her son. I called them and they were wonderful!

I showed up, they didn't make poor Owen wait. They got blood on the first prick (although not quite enough before it clotted). Then they waited while I called Dr. Stock to get permission to draw on his foot. His response was "PLEASE, ANYWHERE!" They got all they needed and more from his foot poke and we were done! They were gentle, friendly and made Owen smile... not cry.

I took it to the mail store and had them fedex it. Can you believe it cost me $40? Whatever.. it's done and I'm never doing that again!

I emailed cardiology at UCLA today and she said his PRA labwork from Feb 12th came back with no decrease in antibodies. Ok.. still praying that this one will be better.

They said after they get these results back, we should take another vaca out to Los Angeles so they can see Owen. Another vacation is in order!

Now... do we visit Sea World or American Girl Place this time?? Any suggestions??

Sticky Situation

The good news is...

Owen is feeling much better. He hasn't puked since we changed his tube and he is tolerating his full feeds. He's still not 100% back to his happy self, but I wouldn't be happy if I had to go through what he did this morning.

The bad news is...

I took Owen in to get labs drawn for his PRA (panel reactive antibody) test. So far, these tests have been done inpatient at the hospital. Today I went to a Sonora Quest lab by our home. I had an appointment scheduled so we'd be in and out. HA! That didn't happen. They took us back after 30 min of waiting, the girl pricked him once, DUG around looking for a vein and then said "I give up!" You have got to be joking.

Another lady came in and tried. She DUG around the vein while Owen screamed and couldn't get any blood. Who are these people? We're at a lab right?

Owen is a hard stick, but I have never been to a lab that can't get any blood from a vein. They may have issues getting an IV to flush, but not a simple blood draw. I told them to try his feet, they are usually successful there. To which they replied "we only draw from the upper extremities."

They both stood there staring at me and said "mom, what do you want to do?"

I got up, walked to the front desk and politely asked for a refund. They had charged me cash for the blood draw (refused to bill insurance) because I was going to take the blood to the post office and fedex it to UCLA, myself. They don't do that either.

Ahhhhhhhhhhhhhh... what a morning!

Owen was hysterical and he usually doesn't even cry when he gets an iv. I have a call into cardiology "WHAT DO I DO?" I'm not about to take him back to a lab to get poked. I don't know if I can just walk into the hospital, walk into ICU and ask one of Owen's nurses to draw blood... cause that's what I want to do! I don't want anyone else touching his poor veins.

Sorry UCLA... you'll get the bloodwork someday. I think.

Kidney Stone

Nope, not me. Thank goodness.

Carson had yet another kidney stone this morning. Many pain killers later, he passed it! Usually it takes days to pass the stones, but he got lucky. It's not fun watching a grown man cry. (He didn't really cry, but he would have felt better if he did!)
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Owen puked and puked at around 3am last night. Then his NG tube was accidentally pulled out... it was disgusting! Usually I change his tube every 30 days. This time it had only been in for about 12 days and I was shocked to see how icky and discolored it was. Nothing like usual.

We're crossing our fingers that maybe he had a bacterial infection in his tummy and that tube was holding onto some of the bacteria so he couldn't fully rid of the bug. I put a new tube in and today he hasn't had a dirty diaper or a spit up. He's still not back to same ol' Owen, but what a huge improvement!

He's still looking pasty white. I'm just happy he's tolerating his feeds and absorbing his meds. This is good. No.... this is GREAT!

Slight Improvement

**UPDATE**
Owen just had 2 icky, watery diapers... icky. He also looks like he's in desperate need of a tan. He's PASTY white! Keep praying that this passes and he feels better!
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Owen wants to stay away from the hospital... he's making a little improvement. Less puking ... and I'm being optimistic! He seems to be tolerating his feeds... more. He's spent the majority of the day sleeping and resting in bed. Sleep it off buddy.

We did a little play doh therapy for about five minutes. Since he still HATES to bear weight in his feet or knees (there goes crawling and walking)... our occupational therapist suggested I try different textures on them. Today was play doh! He wasn't amused. I squished in into his feet, between his toes and he looked at me and said "AAAAHHH, NA NA NA NA!" Who doesn't love to squish play doh?? Tomorrow.. we're going to try rice!

I thought I'd clarify a little on his heart. I am so used to the medical jargon that I throw it around and then I got to thinking that alot of you don't know what some of it means. Why would you?

Owen had lab work done in January while he was in the cath lab. The labs came back and Owen is definetly in "heart failure". Surprise! We already had that figured out. Milrinone is a medicine given to patients through IV and it helps the heart work and is primarily for patients in heart failure. When a patient is admitted in the hospital on milrinone... they also become priority on the tranplant list.

The reason we are not to this point with Owen YET... is because he is doing ok at home on his loads of oral meds. There will be a time... soon (this Monday if he doesn't improve), when Owen will be admitted and placed on Milrinone. We call it vitamin M for short... it's magical!

We'd like to keep Owen home as long as possible... for obvious reasons.

We had to run to Target this morning and grab some formula. Owen caught sight of one of those giant bins of balls.... he about jumped out of his stroller!

Of course I bought him one!!