Everyday Normal

I have been so overwhelmed with the medical stuff, that I just wanted to document our everyday normal.   Our mornings are so crazy getting breakfast made, lunches packed, showers, and out the door by 8:20.  We drop off Kam at school and after a goodbye kiss.. it's just me and this silly boy. 

I know it's a naughty vice, but I stop at Sonic entirely too often and pick up my morning Diet Dr Pepper.  I blame this horrible habit on the school being around the corner from Sonic and the fact that they added a morning happy hour.  I don't drink it all on my own.. Owen helps a momma out.

As soon as we get home, we usually have about 30 minutes of calm before therapies, errands, and Owen needs his meds.  I always light a candle to get rid of the breakfast smell and clean my kitchen. I can't stand a dirty kitchen, floor or dishes in the sink.  Owen either helps me out, or he plays with his toys while watching Curious George on pbskids.

After meds and his morning tube feed, we have therapy three days a week.  The other two days, we get started on his "preschool time".  This consists of workbooks, drawing, crafts, or just practicing writing letters.   He is doing fantastic and is going to be totally ready for Kindergarten in another year.  His favorites are mazes, connect the dots and drawing the missing objects in the pictures...like the monkey missing his tail and ears in the picture below.

He doesn't like to write his letters, but we do it anyway.  Just this week, Owen has started showing his 'perfectionist' side.  Daddy and Kam do everything slowly and perfectly!  They don't like to make mistakes and Kam likes things neat.  She will redo an entire math assignment in order to get the numbers perfectly in the graph paper boxes without a billion eraser lines.  I am the opposite and will usually do everything as fast as possible, just to get er done, mistakes and all.  Back to Owen.. I always assumed he was going to be just like me, and he squashed that idea this week.  He was so particular about staying the lines, gluing the cut outs straight and re gluing where the edges were lifting off the paper.  This mama needed some serious patience. :)

Oh and we finally conquered the concept of rhyming!!  I would say Bat rhymes with Rat...and he said.. "no mom.. that's a MOUSE!! Bat does not match (rhyme) MOUSE!"  Sigh. 

He has a pretty good attention span and we can spend at least 30 minutes on "preschool time" before we move on to PLAY TIME!!  Owen loves weapons, superheros and fighting.  I wish I got paid for each dart I pick up on a daily basis.. I'd be a millionaire!  He loves his darts and dart guns and shoots them at everything!

He also likes to have me help him set up his train set or buildings and then he uses his "villains" to destroy what we built and then he gets a superhero (Spidey or Captain America) to come by and fight the Villain off.  Then we rebuild and do it all again!  I love watching him play and this is when I get my facebook, blogging and emails done.

Today, he wanted to fight with ME.  He loves to fight!  So I hid behind the couch and I was the Mommy monster.  He would come around the couch and attack me and I would pretend to beat him up and we would throw down.  I got my butt whooped as always, but it was totally worth it!  Last night I was the blanket monster and had the blankets over my head in bed.  I was getting taken by my 4 yr old and then Kam joined in on the action.  Oh the giggles that came out of my kids were priceless!  I am convinced that Kam will never be too "cool" for me.

After fighting this morning, we ate some lunch and then Owen wanted to play Wii.  I needed the break just as much as he did.  Look how zoned he is.  He was Obi Wan defeating the Sand People in Star Wars... it's tough business.

I just took this photo of my family room.  Proof that he is having fun and making memories.  It'll get cleaned up as we are running out the door to pick up Kam from school.  She usually walks in the door, asks for a snack, tells me all about her day and says.. "what do you guys do all day?"  Ha!

Evenings are just as crazy.  It's homework, dinner, dance, and dishes.  Then we all settle into our own worlds until we drift off.  Kam can be found listening to her iPod snuggled into bed.  Owen is in his bed playing iPad.  Daddy is on his computer in the den or snuggling me in bed and I am zoned out watching some well earned tv time! 

This is our everyday normal and I wouldn't change it for anything.

Owen's Cardiac Plan (as of today)

My head has been spinning as I load up on research about possible cardiac outcomes for Owen.  My main goal is to give him the best quality of life possible.  The results from his most recent cardiac catherization shows his pressures to be too high to qualify for the last staged palliative surgery for his single ventricle anatomy. The biggest issue he has is his tricuspid valve stenosis and regurgitation.  Owen has already had two valve repairs and the final consensus is that it isn't going to get any better.

I spoke with Dr Stock at Owen's cardio appointment today about "options".  I hate to compare Owen to other kids dealing with HLHS, but the reality is that he is one of the "sicker" ones.  Kids with the Glenn (2nd staged palliative surgery for single vents), are not meant to live into their teens or adulthood.  The circulation is not ideal for growth and he just isn't getting enough oxygenated blood to his lungs.

When I posed the question to our team at Stanford about the age of their Glenn patients, I was told the oldest they see are in their older single digits.  If they don't qualify for the next staged surgery, they move forward with transplant. 

I get asked all the time.. Why not just move forward with Transplant?

Heart transplantation is not a cure all.  It is taking one heart defect and replacing it with another.  Heart transplant patients are always at risk for rejection, cancers and coronary artery disease.  The way I have heard it put is "it's like placing a ticking time bomb."

Owen is also at higher risk of rejection due to his high PRA levels.  His antibodies are highly sensitized and when listed for a heart, his antibodies will cause voids on his listings.  So not only will he need a blood type "B" heart, but he can't accept from 60-80% of the donor population.  That significantly decreases the number of donor hearts.

If that weren't tough enough to digest, Owen is getting to an age where finding a heart is the most difficult!  They match donor hearts to the size of the recipient.  Owen is getting too big to accept a donor heart from a small baby or toddler, but it too small to accept a donor from an adult.  There just aren't as many school aged children that have "accidents"... which is just so hard to even write. 

Each week, the cardiac team at Stanford meets to discuss individual cases.  Owen was discussed at last weeks conference with a group of 40 cardios and surgeons, including Dr Hanley (Owen's surgeon).  They unanimously agreed that Owen will most likely never become a Fontan candidate.  Even if he were to find a way to "squeak" by with a successful Fontan, which they don't foresee, the post Fontan quality of life would be difficult and short lived. 

With that said, they are moving forward with discussing him at Transplant conference in the next two weeks.  Their concern is that Owen is maxed out on heart failure treatments at this time.  There is no additional medications or oxygen therapy that can be used that he is not already on.  When, not if, he starts to decline, it will be quick and time will be limited.  That was no surprise to hear, but considering the information I just listed above, we don't want to waste valuable time. 

The main topic of discussion is going to the right time to list him for a heart.  They need to discuss frequency and timing of IVIG treatments to help get his antibody levels down.  They need to discuss the option of letting us wait for a heart in Phoenix with medical transportation available to get us to Stanford immediately if a heart does become available.  They need to discuss when they want to see Owen next for followup.

On the upside.. Owen continues to do better than ever!!  I really hope we can get another year or two out of his existing heart, but don't want to run out of time and options.  Do we get a second opinion from Boston Children's or CHOP regarding his Tricuspid Valve?  Do we discuss PRA's and transplant with other centers?  I have full trust in Stanford, but when discussing life or death options about my son, I really do want a "You have exhausted all options" from another top cardiac center as well.   A simple.. "we agree with the path you are taking.."

We are so grateful for the three additional years we have had with Owen's existing heart.  When I look back to early 2009, we were pursuing transplant at UCLA and Owen was already undergoing antibody treatments.  If it weren't fro the 2nd opinion obtained from Stanford, he wouldn't have had these three extra years with his heart.  I won't give up the fight to get all the information I can to make the right decision for Owen. 

All your prayers and "good vibes" over the next couple months are appreciated. Big decisions will be made from both our team at Stanford, obtaining a second opinion and that we will find the best treatment for Owen moving forward. 

Thanks for all your love and support over the last four years!! It has been such an amazing journey and we are so blessed.

Pulled Teeth and Bunny Bait

Kamryn had her last four baby teeth pulled yesterday. That makes twelve pulled teeth in four months!! I felt horrible for her, but she was tough as always. The teeth were in all four quadrants of her mouth, so her entire mouth and tongue were numb for hours. I kept her drugged up on Advil and made her some yummy smoothies, and she is feeling great today.

I am amazed at how quickly her two front teeth straighted out.. six weeks and they were lined up.  The waiting continues for her permanent teeth to grow in so we can get brackets on and pull her teeth together.  She is so excited to be rid of her baby teeth for good!

We looked up Kam's grades today and once again, she aced her classes.  This girl is in all the Advanced Placement program and only gets 97% and higher.  She has never dropped below her baseline and we are so proud of her.  So far, school has come easy to her and we are so grateful.  School was not nearly as easy for me.  I was totally social and had a great time, but my grades were never stellar.  We are excited to celebrate her academic success at this years Golden Scholar night in May.  Yay Kam!!  I still can't believe she only has nine more weeks of Elementary school. 

Owen's energy levels continue to be insane!  Today he insisted on walking through Costco.  I had his oxygen tank in the cart and he just stayed close so he had enough tubing.  He walked until he was blue and winded.. and then he kept walking.  I asked him a million times if he needed a break and he just kept on walking.  I was amazed!!  As you can imagine, he always draws a crowd and a million older couples were giving him high fives as he walked around.  I guess you don't see a little guy on oxygen everyday with blue lips and a signature swagger.   We also go to Costco way to often because all the employees know and love my kids.  When we finally left with an overflowing cart he stopped and said.. "wow.. I'm really tired.. can you hold me and I think it's time for a nap!" 

So proud of him!!!

The only downside since his cath, is that his GI system is out of whack due to anesthesia.  It is common for him to have lots of puking episodes and it takes a while to get his volume tolerance back up.  After I gave him his night meds last night, he sat up in bed and puked up pretty violently.  When he was done he laid down and said "I love you Mom".  He has the sweetest heart and I hate that he has to go through so much.

I have seen this Bunny Bait on pinterest and I knew Owen would LOVE it!  All of his favorites in a bowl.. Popcorn, M&Ms, Pretzels and sprinkles drizzled in white chocolate.  It's a shame that he hated it and that I will have to finish it off all by myself.  Or, I'll just save myself the million calories and send it off to work with Daddy tomorrow.  

Photo and Recipe found here.

I haven't heard from Stanford yet with results from their cardiac conference on Owen.  I figured I'll give them a call next week. I have plenty of questions to ask.   I'll do a more detailed post on Owen's cardiac status next week after I talk with Stock. 

Our weekend plans... Hunger Games, Heart Moms Night Out, Playdate with friends, and (hopefully) moving Owen into his bedroom.

Oceanside Beach and Harbor

We spent our last day in Oceanside enjoying the Harbor and the Beach.  My parents and Gigi were in San Diego on Spring Break too!  They drove up to Oceanside to have a little fun with us. 

It was really overcast and a chill in the air.  We stopped at the Harbor and ate fish n' chips before heading down to the beach.

Kam has a little tradition where she has to buy an ice cream cone at the candy shop in the harbor.  I think it's the grossest ice cream, but we stopped since it's tradition.

We finally made it down to the sand and my kids were in heaven.  Gigi had been in the water in San Diego for a few days.. body surfing in the freezing cold water.  My kids aren't as adventurous when the water is freezing cold.  Owen dug tunnels and played with all the clams the girls brought him.  He managed to dump a few scoops of sand in my mom's ice cream as she was eating it. 

Kam and Gigi walked around picking up shells, crabs, mud and whatever else they could find.

This is what I call Kam's broken wrists.  Once in a while when she dances she lets her wrists take control and they do .. this. 

Owen likes to dig and bury things.. then dig some more.. then dump sand around.  This entertains him for hours!!

The girls like to get muddy!

Daddy, Kam, Gi and My Pops. .. the sun never did come out to play.

In the evening, my parents headed back to their hotel to rest.  We all headed over to Gma Monica and Gpa Todd's penthouse to enjoy a spaghetti dinner.  It's nice having three bedrooms with tv's so everyone could do their own thing.. together.

And the proof that I was  on this trip too!  Ha.  I'm always behind the camera, but Monica snapped a picture of us watching Iroman. 

We had a super fun trip and left to come home first thing the next morning.  Kam had a fun Spring Break that made going back to school this week pretty difficult.  Owen has had double the energy that he did before his cath. I know they didn't do any intervention, but he's been a crazy boy.  Yesterday I asked him "What am I going to do with your craziness.. you are a wild boy!"  He responded with.. "You will LOVE me for it!"  He is wise beyond his years.

Oceanside -- Relaxing and Joe's

We woke up on our second day in Oceanside and it was freezing outside.  We spent the morning relaxing around in our Pj's and decided to walk down to the beach after lunch.

Owen had been begging to check out the playground and swing for a bit, so Kam and I went for a walk.  The sun decided to peek out of the cloudy sky and for a moment, it was warm.

Kam was a little extra moody and tired today so we decided to save the beach til tomorrow.  We had to pack up and move out of the penthouse with Gma and Gpa and move into our own room.  I did a couple loads of laundry and we got ready to meet everyone at Joe's for dinner.

Kam, Ry and Tate are growing up so fast!  Pretty soon we are going to have a bunch of teenagers around.  Yikes.

Here's the gang walking to the harbor for dinner.  Carson was trying to ruin my picture by being a goofball... you will notice a pattern. 

It's a tradition of ours to eat at Joe's Crab Shack at the harbor each time we are in Oceanside.  My kids can pound down seafood, and I love the crab pots they have.  Everyone had crab, with the exception of Tate, but she did eat squid when Carson promised her a dollar!

Here's another photo of Daddy being silly...

And another...

Here's Gpa Todd and Gma Monica.. thank you guys for letting us crash your time share.  We had a fantastic time!

Ry was celebrating her birthday, so she got to wear the chicken hat and hula hoop!! 

Gma Monica told the waiter that Owen just had surgery so he brought Owen out a crab hat, sunglasses and a sword.  Owen may, or may not, have swiped the sword out of the restaurant under his stroller. 

Owen was "really full" after just a few bites of crab and corn.  That was until he saw Tate's desert of ice cream sandwiches, with sides of chocolate sauce, sprinkles and m&ms.  Of course he wanted his own and was "really hungry" again. 

By the time we left it was dark.  We were stuffed full of crab and sundaes and ready for bed.  Our first day in Oceanside was relaxing and well spent. 

It was a chilly walk back to the hotel.  The big kids got their jammies on and had a sleepover with Gma and Gpa in their room.  Daddy crashed early, while Owen and I stayed up late watching Spiderman. 

Arriving in Oceanside

We are home. It felt amazing to sleep in our own beds last night.

We had a great time in Oceanside spending time with family. It was exactly what we all needed. It feels like forever ago that we were in the hospital.  I am really hoping we can go a year without needed to be admitted to another hospital, or cath procedure.  Owen had a tough time this go around and he was only there one day. 

On the way to Oceanside, Owen was a little crabby, but getting back to his sweet self.  He loved looking at the back of his Green Goblin toy box at all the "bad guys".  He told us a million times..  "I want this one..and this one.. not this one..."  It seriously kept him busy for hours!

When we arrived in Oceanside, after our 8 hour drive, we were thrilled to reunite with Sis!  We checked into the time share where the rest of the family was staying and got settled in.  Owen was running all around saying 'THIS is the best place ever!!"  He loved the balcony, looking over the harbor and beach.

I ran to the store to stock up our kitchen for the next few days.  Then came back to grill burgers and eat with Gpa Todd and Gma Monica. 

When I finally crashed for the night, I took the time to reflect on Owen's cath results, thought about his future, and I feel at peace with where he is today.  He is doing better than ever!!  The energy that we saw in Owen over the next few days of our trip was insane.  He has never had this amount of energy and stamina.  It was exactly what we needed to see to keep us optimistic and hopeful!!

Post Cath

Owen had a rough recovery last night.  It took him a while to come out of anesthesia and we had to spend 4 1/2 hours in the short stay unit.  That was the longest 4 hours ever!!!  Owen usually wakes up and is pretty calm and complacent.  I don't know what came over him, but HULK is the best way to explain it!  He was trying to pull out his IV, wouldn't keep his leg still to avoid bleeding from the femoral artery.  He was screaming, pinching, biting, kicking, bossy and crabby.

We had a chance to speak in more detail with the cath team and also with Cardiology.  Owen continues to be maxed out on medication therapy as well as oxygen.  There isn't anywhere to really go from here.  His Tricuspid Valve cannot be repaired or replaced at this point.  The Fontan isn't even considered at this time, "it would take a miracle."  Transplant will be the next step. 

The good news is that Owen's function continues to be decent.  He has more energy than ever and continues to improve clinically.  We are just counting our blessings and hopefully he has a few more years in this heart.  I know that may be wishful thinking, but I'm hopeful. 

Waiting for your child to decline sounds brutal.  We have been told that when he declines, it will happen quickly.  

Just when my heart was heavy and I let myself feel sorry for him, we were placed in a recovery room with a 17 year old HLHS teen.  He has had a wonderful life and is now being accepted into many prestigious colleges.  It was brilliant to hear his story and talk to him for a good couple hours.  Unfortunately, his heart is failing and he is on Milrinone waiting for his new heart.  He also has highly sensitized antibodies, just like Owen, and was there for his 5 hour IVIG treatment.  He was in high spirits, had a positive attitude and so sweet.  I  am grateful we were in the same room.. I needed to hear his story at that very moment. 

The hard truth is that all of these single ventricle kids will need a transplant.  There is no cure.  It's all just a matter of "when" their heart will start failing.  It doesn't matter if Owen is 5, 15 or 30.  We will continue to move forward enjoying life to the fullest.

I was so glad that Subrina (Chase's Mom) came down to visit with me.  It was a tough night!  If you don't know Chase.. he's Owen's buddy from Phoenix who just got his new heart at LPCH a few weeks ago and is doing fantastic!  Thanks for the talk Subrina!

We got back to our hotel around 8pm last night.  Owen was so excited to see Uncle Rustyn who drove down from San Fran.  It really lifted his spirits and he was feeling more like himself.  He still had a hard time holding his core up and kept falling over.  His speech was slurred and I was about ready to take him back to the hospital.  He ate a little and finally crashed by 10 and woke up a new boy!

I am so grateful that we don't plan to do another cardiac cath  until next year.  We will be followed every four weeks by Dr Stock (per Stanford) and we will be back at Stanford in September for followup.  Any sign of decline, we will come back sooner.

Around 9am, we decided to pack up and head down to "San Adego".  Owen was ready to get out of there!  We finally made it to the time share by 5:30pm and were so thrilled to see Kamryn!! 

We are going to spend a few days on the beach, soaking up our time together.  We are so grateful for the gift of "time" and for all of the support from our family and friends.  You are all so wonderful!!  I know it's hard to fully grasp the situation and how scary it is. 

I still don't know what caused Owen to react the way he did to anesthesia, but so glad that the mood swings were short lived. 

I have tons of pictures, but I am too exhausted to post them right now. I promise them tomorrow.  Goodnight.

Initial Cath Results

Owen is done with his cath in record time. 

Dr Perry just came in to talk to us.  The news is as crummy as ever.  Owen's pressures are still high and even a tad higher than last time.  The gradient across his Tricuspid Valve is at around an 8 and this is causing his lung pressures to back up to an 18.  Ideally.. you want those around 10 or 11. 

Without that darn Tricuspid Valve gradient of an 8 (a zero would be ideal), his lung pressures would be perfect.

The Fontan would be entirely too risky to attempt and it sounds as though it will probably never be an option.  As Owen grows, his pressures will only increase. 

As he gets bigger, there may be another option to replace the tricuspid valve, but when we talked with Dr Hanley (surgeon) in July, it was decided that the TV replacement would not benefit him.  The risk would be too great. 

Owen has developed more collaterals (not surprising) but they decided to leave them alone since they just coiled six in July.  He is not at risk of developing AVM's at this point, so that is positive!

Transplant is not an option at this time as he is doing great as a Glenn.  It's just not going to last long term.

Owen is headed to recovery and I'll update more when we talk to his Cardiologist with further options.  I'm hoping he has more tricks up his sleves!!

Thank you for all your continued prayers today!

Cath Pre Op

As I posted a little earlier.. we got a call this morning from the cath team at LPCH. They wanted to know if Owen could come in for his cath TODAY instead of Tomorrow. I was really glad he refused to eat any breakfast this morning.  We packed up and headed over to the hospital for admitting and pre op clinic. 

Owen had his echo, ekg and was a champ as always.  His weight is up to 34lbs again!!  After picking our a few stickers and toys, we were off to the surgery center with the cath team.

I filled out paperwork and Owen played with his new toys.  Then we went back for a change into the infamous surgical jammies.

Owen told every single nurse and anesthesiologist that he did NOT want the mask or an IV today!!  We told him we would start with some versed in his Gtube and that got him all kinds of excited!!

Then I pulled out his Hulk Smash gloves we bought him for the trip and he had such a great time beating everyone up!  Everyone loved his Hulk gloves and he was silly times 100 due to the Versed. 

When he couldn't hold his head up much longer, we headed over to the cath lab.  He layed on the table and was fine as they hooked him up to his leads, blood pressure cuffs and pulse ox.  He was almost asleep when he caught a glimpse of the anesthesia mask out the corner of his eye and that was it!  The doc was amazing and took the mask off and just used blow by with the happy gas and that seemed to work just fine!!  We left him about an hour ago sound asleep on the cath lab table.  He's in good hands.

We are praying for great results.  We will know more in a few hours and I will post again then.  Thank you for your support and prayers!