Easter

We have had a wonderful weekend celebrating Easter and our beautiful Spring weather.  The kids were out of school for Good Friday, so we spent most of the day by poolside. 

  Owen tried out some new floaties and wasn't too thrilled.  He yelled "Someone help me.. my Mom is going crazy... she's gone mad!!"  Apparently those floaties were a bust.  He really just likes his floaty boats and dive sticks. My sis brought her clan over to swim and Gigi joined us.  Love the flippers and sunblock cheeks.. this girl is silly.

Easter morning was very sweet.  The Easter Bunny send the kids on a scavenger hunt around the house to find their baskets.  Owen got a new motor boat for the pool and Kam got a 3DS game she's been wanting with nail stuff.  Love these kiddos.. they are my world!

We all went to my parents for Easter lunch after church.  My parents got a new tramp a few weeks ago and the kids love it!! 

Gigi got a Slip N Slide for Easter and it was perfect 90 degree weather today to enjoy it!  Owen was too nervous to run and slide, so he was in charge of the hose.  See Liv using the floaty as a shield?  Owen was in heaven!!

I convinced Kam to get her suit on and come play.. promising her it would be FUN!

Then these two got ahold of the hose.  Liv and Owen.. these two are trouble!

Kam was regretting her decision to come out and play.  Ha.  She only lasted about 15 minutes. 

Owen got a little brave and decided to run across the Slip N Slide.  This is an Owen "run".
Then he wanted to try it on the way back... and then this happened... and he was done trying.  Poor guy.
He decided that sitting on the end and watching Liv do somersaults and Gigi fly down the mat on her knees was more fun!  He was outside for at least 3 hours and laughed the entire time.  It was sweet for this mama's heart to see him having so much fun!

We had a wonderful day!  I didn't get to spend much time indoors with the adults because I was having so much fun with the little ones outdoors.  So grateful for all that we have been given.  Thankful to celebrate this Easter Sunday with my family!!

Heart Talk

I don't have any photos with this post because I can't find a single one of my camera memory cards.. I have a bunch.  They are all probably "lost" together somewhere.  This week marked SEVEN months that Owen has been on the heart transplant list!!  I can't complain.. we are fortunate to still be waiting at home with a stable little boy.

I had the opportunity to meet with Owen's local transplant cardio and NP today for a consultation. Things have just not been going too smoothly and I feel that we have lost a local cardio presence over the past  seven months.  There is no question that his old cardio, Dr S. was phenomenal and really gave 150% to Owen.  We had no choice but to transfer care to the transplant cardio when Owen was listed for transplant and I am feeling the less than stellar effects of that transfer in care.  Anyway.. the meeting didn't go as well as I had hoped.  I did get a few questions answered, things are just the way they are and they aren't going to change.  I walked out of there feeling no better than I did before, other than now I have a good idea of who his new cardiologist is as a person and a cardiologist.  He doesn't give his 100%, in fact Owen may get 30%, the rest is done "behind the scenes."  It's going to take some time for me to get to the point where I can trust him and build a relationship with him.. so baby steps at this point I guess.  I will say that his NP is great and she deserves a big shiny medal for all she does.  She carries a heavy work load.

Thankfully, Owen has a great team at LPCH and I have great confidence in them.  We go back on May 3rd and I have gone back and forth on this whole admittance and Milrinone decision.  It's the cause of many sleepless nights.  I keep hoping that the answer will be clear.. I suppose we have a few more weeks for that to happen. :)

I posted this on FB.. but this was Owen's funny quote of the day yesterday...

Me: Owen are you excited to start Kindergarten next year (sometime).  

 Owen: "I'm a little nervous cause you won't be there. But I"ll make a hundred friends, probably, I hope. I will say.. hi, my name is Owen, I was born with half a heart, but I am getting a new piece to my heart and they will glue it together and put it on ice. Now I have a whole heart."

I love his understanding of the whole process and he's such a trooper. 

HopeKids Event

On Saturday, we had our first Hopekids event in such a long time. Easter at the Ranch was close to our house and outdoors... so I took a chance and signed us up. It was a warm 80some degrees outside, but the breeze made it feel amazing.  We started by visiting with some heart friends, while the kids bounced (or sat) in the bouncy castle.  Then we made our way over to the picnic area for lunch.  Notice my husband being a goofball and crossing his eyes.. photobomb.

Owen was cuddling up to Sis... had to capture the moment.

Then Mr. Owen decided to be crazy and jam out to the DJs tunes.  I love that everyone is oblivious to his silly singing.. we are so used to it!
MVI 0765 from Andrea Simmons on Vimeo. After lunch, we decided to ride the ponies.  Owen would say "this is fun" in the most nervous voice ever.  He's not a fan.  Kam was holding him on and trying to keep her toes from being stomped.  Yes, we are city folk wearing flip flops on a farm.

Who doesn't love a good face painting?  Kam went with the Tyson look.

Owen wanted a skull... which I protested, but didn't really have a say.  Let me just say that washing the black off from around his eye was a chore and he still has a black eye two days later.  He loved it and wouldn't stop looking at himself in the mirror the rest of the day, so it was worth it.

Carson went with the third eye look.  I decided to not hold up the line anymore and saved my face from the awesome artwork. 

We had a great time with HopeKids.  Bridget and the whole organization is phenomenal and we love what they do for these kids.  So proud to be a part of it!  We grabbed an ice cream and a few movies on the way home and settled in for a quiet evening.

Sunday was full of errands, catching up on housework and we took the kids to see the Croods.  Daddy went to play softball in the evening, while I helped Kam with a WWI project..  It's hard to not appreciate the little moments at home, time with family, and productive weekends. 

Goofball and Desert Hike

Last week while we were at Stanford.. Carson and Kam went for a day hike up Usery Pass.   We all love living in the desert and it's beauty!  Sorry they are blurry...

Here is a photo of our beautiful desert!!  I have no idea if this is the bottom of the mountain, or top of it.. but if I look close enough I can see rattlesnakes and scorpions all over.  (I kid)  You won't find me on the top of the mountain.  I'm glad these two had a great time sans Mommy.

Each time I open photoshop.. this photo pops up.  I'm not sure why, but it makes me smile each time.  This was Owen at exactly one month old... what happened to Mommy's Little Monkey?

Oh.. here he is!!!  Such a goofball.

A goofball that pulls the heads off of all his bad guys.  {Ivan Vanko, Lizardman and Venom}

IVIG Round 9... Bumex vs Lasix

We are home.  This round of IVIG started pretty smooth!  We got his IV in quickly at around 7pm and started his infusion around 9pm.  His day and night nurses were on it.  The only complaint I could have made was the night nurse didn't calculate his infusion properly, so instead of an 18hr infusion, it ended up being a 20hr one. 

Owen was crazy, silly, full of energy most of the time we were there.  He wanted to sit up in the chair, rather than be in bed, and we played about 8 board games this morning alone.  Puzzles, crafts and visits from hospital friends.  It was a good day.

Around 2 hours from when the infusion should have ended, we went ahead an increased the infusion so we would be done around 4pm (should have been done around 2:30ish).. no big deal.  Owen has some tummy issues with each IVIG and doesn't feel like having too much food.  This time, he didn't want much of any and I had a hard time getting tube feeds in him.  I didn't want to push him to the point of puking.  His belly was distended (big and round) and hard.

When I admitted him, I overheard the nurse saying that the IV Lasix is on backorder and they had no supply from the manufacturer.  He gets a big dose of IV Lasix (diuretics) half way through his 18hr infusion to help him keep the fluid off.  Instead of IV Lasix, they made the call to give him IV Bumex, which is much more potent.  Owen has never had this, but I assumed it was fine.  His local transplant NP ordered two small doses and held his oral Lasix doses as well. 

Fast forward to early this afternoon, I noticed his belly and so I told his nurse to have a doctor come in and see him.  One of the biggest concerns I have is that we have never seen his transplant cardio when we are inpatient in the CVICU (Cardiovascular Intensive Care Unit).. ever.  His NP comes around and admits Owen and does her assessment, which wasn't done this time around.  Anyway.. a random cardio we never met before had dropped in this morning for a quick listen and that was that.  He has never seen Owen before... kinda strange.  Sorry.. I digress.

After about 45 minutes of waiting for someone to come look at Owen's belly, an intensivist, we have never seen before came in and looked at Owen.  She looked at me and said 'what do you think?  If this happened at home what would you do?"  Seriously?  I asked her about the IV diuretics and doses and she had no idea so she called his transplant NP to confirm what was given.  It sounded like he got a pretty conservative dose of Bumex, and he was fluid positive by about 190ccs.  They wanted to give him another dose of IV Bumex, which I declined and requested he just get his regular dose of oral Lasix.  Then she said "we'll probably keep him to monitor him for a while!" 

I have no problem with keeping him to monitor him, but the problem is, no one actually is monitoring him but Me.  It's so frustrating.  It was about 20 minutes later that his transplant NP called me on my cell to say she spoke with Stanford and they said if he was there and this happened they would keep him a bit longer to make sure he was okay.  That is when I broke down in tears.  Mostly out of frustration.  My point to her was that they aren't monitoring him there.  Yes, he's in the CVICU, but not a single one of the doctors or nurses from his transplant team locally were there to assess him.  No cardiologist came in to assess him.  I feel like they just don't care at all!  When I tried to make my point she said "I am not going to argue with you anymore."  Bring it on... the tears, the frustration, it all boiled over and I just hung up.

For the next hour, no oral Lasix came.  The nurse finally brought it in and I made sure she knew it wasn't her that I was upset with.  She was great!  She understood where I was coming from.  We ended up staying and being "monitored" for another two hours and guess what?  Not a single doctor, NP, intensivist, NO ONE came and saw Owen.  No one assessed him.  Even after Owen's nurse asked at least FOUR different times for a doctor to come in and check on him per my request. 

The discharge orders were in the computer, but put on hold.  Our nurse got someone to release them and we were out of there. Owen is doing better with his extra dose of oral Lasix, just as I predicted.  He has been moving around at home and feels so much better!  We are getting ready for bed now and I am drafting up a letter for his cardio.  I'll call his team at Stanford tomorrow and fill them in. 

On a happy note.. Dr Stock came by to visit!!  Child Life made Owen's stay memorable as always.. Tara is amazing!  We did a full chem panel and all of Owen's numbers look normal.. yay!! :)

IVIG Round 9

Our weekend was chill and we it was tough to start our first week of reality, coming off of Spring Break. Kam woke up yesterday and decided she wanted to go get her hair done.. it was time for a change. I convinced her to grow her bangs out and get a layered cut and it turned out so cute!!   This is day 2 hair, post 8 hours of school and running bleachers.  It still looks great!

Owen was passed out in the backseat at pick up today.  We were on our way to the CVICU at PCH for his 9th treatment of IVIG.  Totally not awesome.  Owen was less than thrilled... "it sucks" is the way he describes it.  He is making the most of it though.

We arrived at 4pm and we are settled in at almost 6.  Owen has chatted with all the nurses, showed off his muscles and currently is sitting in my chair watching movies.  I, on the other hand, am laying in his hospital bed.  He is convinced he's going to pull a fast one on the IV team when they come in.  He says he will tell them that I am Owen, and he is Andrew.. so that I will have to get the IV instead of him.  The nurse said she will back up his story. :)  He has it all figured out. 

The docs and nurses keep peeking in to check on him and he says "Get out.. be quiet."  One NP said "Is there anything else I can do for you besides get out and be quiet?"  He said "Nope.. thanks for asking though." 

He can hold his own in this environment.

We are waiting for the IV team, and the IVIG has been ordered.  Hope to get things rolling before 10pm.  Let the fun begin.

Swim Time

Spring break is coming to an end and it has been a wonderful week!  Monday we started with an early morning gymnastics session, followed by a movie and Kam spent the night with her cousins.  Tuesday Sis got her braces tightened, followed by some summer clothes shopping and an afternoon of catching up on housework.  Wednesday we  had a busy morning of errands followed by a little packing, a visit to a new cupcake store and watched Wreck It Ralph before a late afternoon nap.  Thursday was our crazy day to Stanford and back, but Kam and Daddy took full advantage of the weather and went on a long hike to Usery Pass.  They had a really great day together!  Friday, we wanted to enjoy the 96 degree weather the best we know how.. our first swim of the season!!

My grandma has been wanting to swim, our pool is heated, so we decided to make a day of it.  I was so surprised we were the only ones at the pool all day!  A few older couples came and suntanned, but that was it.  This is my idea of Spring Break.. swimming, sunshine, snacks by the pool.. so much fun!

Owen started with the "hot pool" which isn't any warmer than the big pool right now.

Kam and Liv were waiting for everyone to get sunblocked and the floaties to get blown up. These two swam around all afternoon together.. mostly because Liv was getting used to the water again and Kam was there to catch and play with her.

Gigi just jumped right in!  This girls is wild, crazy, fun.. just like her Auntie.. {me}.  What a goof!

Sweet Lucy... she was so brave jumping in from every corner.. swimming all around.  She was the most timid little girl last summer and so afraid to do much in the water and this year she was as brave as could be!! 

Ahhhh.. love my munchkin!  Carson was holding Bridg while my Sis got Nana ready for the water.  Look at this face.. I could just snuggle her non stop. She loved her first time in the water.  Lots of hats, rash guards and shade to keep her protected.. and she loved it!!

Nana, Kel, Kam, and Carson getting ready to throw Liv across the pool.  Owen could be found floating around in his red car or swimming with me, but he was on the step so I could take a picture.

There he is.  He loved throwing the dive sticks to the bottom of the stairs and then swimming down to grab them.  It's so tough to not let him submerge his face under water.. darn oxygen.  He LOVES to swim!!  He was all over the pool and back.  I am going to grab him some floaties like the little girls are wearing and I'm sure he'll love the independence.  I bring his 50 foot oxygen tubing and just let him do his thing around the water.

It started getting windy after about 3 hours so it was time to get out.  Look at those purple lips.. they match the towel. 

After four hours of splashing and playing.. the kids all looked like this.

We all had a really great day..especially Nana.  She was swimming back and forth and watching all the kiddos play.  How many kids get to swim with their great Grandma?  Fun memories.

I got a call from Owen's NP at LPCH while at the pool.  They were checking in and confirming his IVIG for Monday (not fun).  We also talked a little more about coming back.. MAY 3rd!  She asked how things were going today and Owen was in the background yelling.. "Cmon Mom.. I wanna show you my cannonball!!"  Life is good.. we are trying to live in the moment.

LPCH Transplant Clinic.. It's Time

I am exhausted.  Emotionally and physically exhausted.  It has been a long day.  As I sit at the San Jose airport awaiting our flight home, I am just a little numb.  I know after a good night sleep, and some clarity, things will be better.

We arrived in Palo Alto in plenty of time to enjoy a quick lunch on the hospital patio and play with the lobby train for a minute.  Owen had vitals done and has had great weight gain.. 37.8lbs and 43" tall!!  His sats were in the mid 70s, which is a bit lower than they usually are here, and his blood pressure was normal. 

His echo went great and the echo tech took some really cool 3D images of his heart.  Then his EKG went off without a hitch and he got to pick out some toys from his favorite treasure chest.  Ducks that he calls "batwing and super wonder duck".  They have entertained him all afternoon!

Onto our visit with the transplant NP... Owen is doing much better.. finally kicked the RSV... sats back to baseline.. his energy levels are back to baseline.... ect.

Our sweet Social Worker came in and we chatted about schools and she gave me some great resources for advocating and navigating the school system. 

Dr Rosenthal came in to and immediately said... "tell me about his every day activity.."  I went through our average day and then I heard the words I didn't want to hear, but I knew they were coming.

He said we had the option to stay and be admitted on Milrinone now, or we could go home and come back in a few weeks. It's inevitable. We discussed the pros and cons to admitting Owen and having him hospitalized.  I knew this was coming.. things have been too good for too long.  Owen's heart failure has been managed at home well {pat on my back}, but it's almost time

Now for the pros and cons....

PROS:
Owen would be bumped to 1A {highest priority} on the transplant list
Owen would be given milrinone or {magic M} as I like to call it because it's magical.
Milrinone helps improve the function of his heart, so it could potentially buy him more time on the list AND help give perfusion to his other organs {liver, kidney, gut}.
Owen would be closely monitored by his team at LPCH.

CONS:
Owen would be admitted to the CVICU for an indefinite amount of time.
Quality of life.. now he is actually living a somewhat normal everyday life at home.. that would end.
Exposure to illnesses and other infections that come with hospitalizations
Lots of pokes and tears
Once we start Milrinone, we can't go back.
I'd have to move to Palo Alto with Owen for an indefinite amount of time.

The other explanation that Dr R. gave was an analogy about surfing... if you miss the wave.. you will most likely never catch up to it.  But if we catch the wave, then we might have a good chance of riding it out.  Meaning.. if we wait too long, Owen may get sick too fast and we will run out of time.  If we stay ahead of the wave, get him on Milrinone now and bumped to the top of the list, we may actually have a chance of getting a donor heart. 

It is a tough, tough call.  Not only for me, but for his transplant team.  There is no exact science to this.  Oh how I wish there was a crystal ball to show me how things will transpire. 

Right now we are tentatively coming back to Palo Alto in 4 to 6 weeks to be admitted and started on IV Milrinone.  Until then, I have a lot of prayers, thought and hopefully a peace that this is the right decision for Owen.  Time to prepare and make arrangements for my family.

Prayers would be appreciated.  Maybe we will get a heart offer in the next six weeks and all this worry will be for nothing.  Please pray for that!!

On Our Way to Sunny CA

We are on our way to sunny.. and much cooler Palo Alto, California.  It is going to be a long day, that started with a 5am wake up call.  We have a 8:30 flight out of AZ and then we have transplant clinic all day at the hospital.  Follow that up with a late night flight home, if things go well, which I am hoping they will.  Owen has had a great couple of weeks and is feeling like himself.  He is still breathy when talking, his sats are lower than his baseline, and so we packed an overnight bag... just in case. 

While at the airport, Channel 3 news was roaming the airport with the Phoenix Suns Gorilla and Owen was thrilled!!  I decided to leave my camera at home today.. so a random stranger took a photo for me and emailed it to me.  I love good people. 

I'll keep you all posted today... time to board our plane.

Wedding and Baby Blessing

We had a really fun weekend filled with celebrating family. On Saturday, my oldest niece got married!  It was a really fun wedding and reception and who doesn't love getting all dressed up?!  Owen was thrilled to wear his new suit, and when he tried it on the night before, he said.. "everyone is going to think I'm rich!"  At the wedding a few people said "Owen.. you look rich.." to which he replied.. "Told ya so!"

He felt like a million bucks!!

Kam is so pretty.. love my sweet, kind hearted baby girl. 

We arrived at the church a little early and the ceremony was short and sweet.  Between the wedding ceremony and reception, we just hung out and took a few pics.  Carson was being a goofball all night. and Owen was happy playing his iPad and hanging with his cousins.

Most of the girl cousins, aside from Kate and Karlee because they were getting ready. 

Kam and Daddy.. love these two.  There is very rarely a time that these two aren't totally photobombing a photo.. love this one.

Here's the Bride and Groom.. so pretty!  We wish them years of happiness together.  I can go on and on about how young they are, but we were 21 and 19 on our wedding day.  I guess I just feel old... that, and Kam is only six years younger than the bride.. so that is enough to freak me out a little.  They are happy and ready to start their lives together.. so we wish them well!!

After dinner was served, there was DANCING!!  Who doesn't love to get their groove on the dance floor?  Owen asked "where's the ROMANCE?" and wanted the dancing to begin. 

Then he asked Tate to dance with him.. what you can't see is that he's standing on her toes making her do all the work.

And here are a few pictures of me and my babies.  Owen was laughing and you can see his cheek stuffed full of pulled pork. 

And my girl.. 

We had a great night.  Congrats to Karlee and Brian on a successful wedding!

The next morning, baby Bridgit was being blessed at church.  She only cried through half the blessing and then she gave her Auntie lots of love.  I was bouncing her on my knee in sacrament meeting and she was smiling and laughing up a storm.  Love this sweet bundle of squirm so much! 

My sister had family over for a little lunch after the blessing and the weather was perfect.  70 degrees and sunny, with a light breeze, the kids couldn't stay indoors!  Owen tried the girls' teeter totter and loved it.

Liv and Lucy played on the swings and in the playhouse with Mr. O.  Until Owen refused to let Liv in because "it's only for 5 year olds".  Liv and Owen are like oil and water.. those two are nuts.  Later in the afternoon as we were leaving, they must've made up because Owen says "Liv is my BFF.. best cousin forever." because she shared her transformer toys with him. 

Bridgey was loving the weather outside before her nap. This weekend was so full of laughter and spending time with family. My kids are so lucky to have lots of cousins to grow up with.  
And with that.. it's SPRING BREAK in the desert!! It's going to get up to the 90s this week and we have plenty of swimming, a trip to Stanford, and lots of relaxing to do!!