Gameplan

I just realized I forgot to do a blog update from our care conference last week.  I did a FB live video with Owen but I wanted to type a little here too.  We are going HOME!!!  It's bittersweet leaving here for a second time with an even sicker boy, but we are so excited to go home.  Even if it's for a short period of time.  Hopefully the next time we are life flighted back, it will be for a new heart!

Owen is pretty well compensated on Milrinone.  After a lot of deliberation, the team decided not to take him to the cath lab.  We have a great plan in place and things have all just worked out beautifully.  We almost broke free today, but the Milrinone didn't get delivered in time and we  can't leave without that.  The hospital room is all packed up and looks so empty.  This room has been home for the past four months.

I picked up all of Owen's meds at the pharmacy today and tomorrow we will do PICC line/Milrinone training.  The home healthcare supplier will be sending a nurse to check in on Owen every two days and to make sure he is doing well.  We will leave the hospital tomorrow and head to a hotel for a few days.  We have a PICC dressing change, labs and clinic on Friday.  If all looks well and I feel comfortable with how he is doing outpatient, we will be on a plane home.  Eek.  I'm nervous and excited!

We will meet with the AZ team on Thursday for clinic and set up a time to discuss the possibility of dual listing.  It'll either feel like it's the right thing to do or it won't.  It's not a decision we take lightly.

Prayers for a smooth transition and safe travels.

We have kept busy this week.  Bingo, crafts, art and working closely with psych as we get ready for another transition.  Another adventure awaits...

Family Visits!!

Owen's care conference is today at 2 so keep us all in your thoughts and prayers as we come together to discuss the plan moving forward with his team.

We had such a great weekend with our favorite people... of course missing Daddy.  We played hard!!  It rained most of the weekend but it didn't stop us.  We ate lots of yummy food, made a ruckus in the hospital and belly laughed.  It felt so good to have my babies all together.

 

Logan's speech is exploding and he has this little accent where he elongates his vowel sounds.  "OooorrrnGEE", "Maaaamaaaa", "EeeeeemmEEEE"(M&Ms).  I could go on and on but it's just adorable.

Logi wanted to hug and kiss Owen the entire time... he loves his brother.

We went for walks outside and stayed under the covered area.. Logan likes to run off and Gigi happily obliged to chase him in the rain.  Everyone needs a Gigi in their lives.

We took these crazy bouncy balls on our everyday walks around the hospital.  We found empty hallways and the kids would throw bouncy balls and bounce them off the walls.  Gigi and Logan would chase them down.  Owen just laughed and was totally entertained by it.  Kam and I were glad we weren't doing the chasing.

During naptime, we snuck out for pedicures.  Logan loves to get pedicures with us and he always falls asleep on my chest.  Baby snuggles and pedicures is pure bliss!!  Kam got a supercute mani pedi but I didn't get a pic because my arms were full.

Then it was time to send them home.  Logan wasn't really crying here because he was leaving.. just his fake crying face when he doesn't get what he wants.  It's hard not to laugh but by baby number 3, I've learned to just let it go, you aren't gonna get what you want. 

Three little monkeys headed home to Arizona.  I already miss them like crazy.  We will either be coming home or they will be back in three weeks for Spring Break.  We can do this!!  I feel like my battery has been recharged and I'm so grateful for all the time we do get. 

Back to hospital living.  I'll update later today with an update from the care conference.

Decisions, Decisions

It was a fun week celebrating with my little Valentine.  I asked on Owen's Facebook page for prayers as we make decisions this week and I hate to be vague so I will elaborate a little.  Owen has been doing really well the last month!  His labs have been rock solid and his energy is pretty great.  His echo shows no change.. it's still bad, but not worse.  We have no idea what his coronaries are doing and the risk of intervention does not outweigh the benefits.  He has been listed for almost 9 months now and not a single nibble.  We have a couple friends here about the same size (different blood type) and they have been listed over a year (status 1A).  Rosenthal was on service this week and brought up the idea of outpatient Milrinone (like we did in 2013 while waiting).  We decided to think it over a few days and then sat down later in the week to discuss further.  After speaking with his AZ transplant team, Zangwill agreed to the idea of managing him at home.  It all sounds wonderful, but there are many things to consider.

If we leave the hospital on Milrinone, Owen will be dropped to status 1B.  This is a decision not to be taken lightly.  He is status 1A because he really needs a heart, but quality of life is also so important.  

If we do decide to try outpatient Milrinone, is it best to stay in Palo Alto at RMH, or to go home (to Phoenix). 

If we do go home, do we consider dual listing him at PCH.  With the drop in status, dual listing would open up our donor pool.  He are hesitant to make this decision because we won't know which hospital we would actually get an offer from.  They are both within the same region so it would go off radius to the donor hospital.  If a heart donor became available in the NW, it would likely be offered to Stanford and we would lifeflight him back here for transplant.  If a heart became available in the SW, it would likely be offered to PCH and we would drive there for transplant.  

We have many questions regarding UNOS allocation and what options we'd have post transplant.  Where to manage his followup care?  

There are so many decisions to be made and the ball is ultimately in our court.  Owen doesn't want to go home with a PICC line and Milrinone.  He just wants to get his heart and then go home.  I am taking his wants into considerations as well.  

Keep us in your prayers as we work out all the details this week and we will see how things play out.  I know the answer will be clear and we will know what to do, but right now it seems like I have no idea what the right choice is.  We have options.. GREAT options.. we are thankful for that.

Back to hospital life...

My cousins sent Owen this awesome Captain America replica shield that he LOVES!  Thanks Gavin!

Gma Monica had her dental student make Owen a giant bag of Valentines.  It came on the morning of the 14th and he loved reading through them all.  So awesome!

We have played way too many video games, but you do what you do to pass time here. Owen is mostly playing like this.  He is going to be a master yoga teacher one day.

A fellow Heart mom, Lisa (Cemaia's mom), made Owen this awesome "REGENERATING" shirt.  Since he always says he has regenerating abilities as his super power.  He loves it!!

We spend our days wandering the halls and Owen spent several hours playing Lego.com with the nurses the other day.  He loves to go out to the nurse's station and just chat.  He is Mr Social.  It's no wonder he doesn't want to leave. He has made friends with the nurses and loves them all.

We will be making a decision this week, so I"ll let you know.  I'll also have picture overloads because MY BABIES ARE ON A PLANE NOW!!! :)  I'm so excited to see my babies and Gigi monster.  Wish Carson could have come up this time, but he'll be here in three weeks.  Love you all for your support and kindness.  We can do this!!

Week 37.. Feeling Blessed

It was another busy week in the hospital... our 37th week to be exact.  Time has flown by but it still feels like a decade.  Owen is doing SO good!  It's hard to imagine his heart is even sick at times.  His labs are all within range and have been for months.  The biggest issue this week was not being able to sleep and waking multiple times a night with nightmares.  We had to tone down the video game playing a bit this week because zombies were eating his arms in his sleep  and robots destroyed the hospital.  With his late nights and waking multiple times in the night to bolus tube feed him.. I am dragging.  Time with this boy is totally worth it!

We have been keeping busy with card games..I never win.

Schoolwork is a daily event.  He is cruising along with his reading and math is finally clicking.  I had to resort to teaching him the "old school" way I learned.  It clicked with him and he is cruising right along now.  We worked on multiplication and I forgot that he never learned the triple digit addition and subtraction.  He has so many gaps in his education but he is so smart that he always picks it up so quickly!

We try to get outside everyday.  It has been raining constantly in Northern Cali but we had a sunny weekend finally.  Owen and Jay played bumper cars for a while and then drove them all through the hospital back to his room.  I love hearing Owen's contagious laughter.  

Auntie Janesa came to visit today and we laughed hard.  It's always a fun time!  

Back home....

It has been busy at home for this girly.  She toured U of A campus with her cousins last weekend and now she can't stop talking about how excited she is for college.  She still wants to tour Stanford and ASU Barrett Honors.. so fun!  I got her registered for SATs next month and she has AP testing coming up.  Of course she made Golden Scholar and has an award ceremony this week.  She also got her class ranking and she is in the 8th percent of her class.  Brag session over.. I'm just super proud of her!  

I miss her so much that we facetime a million times a day.  Sometimes I just watch her do her homework so it's like I'm sitting at the kitchen table with her.  Tonight was Japanese homework.. what the heck?  My English handwriting isn't even this neat.  

Logi is the sweetest little guy.. "hi mama" is my favorite phrase.  Auntie Sussy took him to Grammy K's to play at the park this week.  

This boy LOVES the park!!

Is this not the sweetest?  I can't wait to teach him piano.  I guess we need a piano to do that.

Oh and he discovered Yo Gabba Gabba this week!  Auntie Sussy dres the characters on a box and Logi could totally point them all out and say their names.  Owen used to LOVE Yo Gabba Gabba.. that's all he would watch.  Can you tell I just adore my kids?  They are just the sweetest.

Carson has been a rockstar!  Working hard, supporting us all, taking care of things at home, and never complains.  Well he complains that he misses us and wants us to come home... like yesterday.  It's been a long time away and it will be a big day when we can all be home together.

Writing this blog post I feel an overwhelming love for my family and for all that we have.  We are all so blessed!  Life is crazy and this journey has not been easy.. but we have Owen here and he's doing so well.  I wish we could be outpatient and living life, but the Milrinone is keeping his heart stable and we are at the very top of the transplant list.  Every time I think of any other options.. they don't feel right.  We are right where we are meant to be now and we are just trusting in the bigger plan.  

Hello February.

It has been a quiet week around here.  I think we have both hit a wall this week and are REALLY missing home.. and they are missing us.  We can do this!  We just need to stay busy and pray that a miracle will take place soon.  Owen is feeling so great lately.  Yesterday he was running (speed walking) around the halls pushing his IV pole around singing "I came in like a wrecking ball" as he tried to navigate the crowded hallways with his giant IV pole.  He is doing more physical activity than I have seen him do in a long time.  His labs look rock solid and for a moment I like to pretend he isn't sick.  Darn it.. he looks so good!! 

This week was the Chinese New Year festival on the 3rd floor.  They had Chinese Dragon dancers, crafts, calligraphy, photo booth and food.  Owen had such a great time!  It's always nice to get out of room and do something different.

We take daily walks and try to get outside at least once.  The weather is beautiful, and rainy, but mostly it just feels good to feel the air on your face.  Owen likes to send me for food or on small errands.  I oblige because it gets me out for a second.  We have been doing school work in his hospital room and heading to hospital school when we can.  Therapists come to work on strengthening his little muscles.  We have a PICC line dressing change today since Owen lost a tooth last night and woke up in little puddles of blood all over his arm and pillow.  It's just always something to keep us busy and passing the time.  

Back home... 

WE MISS HOME!!  We miss Carson and Logi and Kamryn SO much!  This has been a hard week for us all.  We so badly want to be together.  Never take for granted a simple evening at home together.  I know the day to day gets hectic with dinner, homework, and bedtime routines.. but enjoy every single moment of it.  I'm sure I won't be complaining about cleaning my house or cooking dinner in my kitchen for a long time after this.  I miss it all so much.

Hello February.