Sunday Funday

It was a lazy Sunday around here.  Owen has been craving flaming hot Cheetos and that's pretty much all he will consume.  Last night he gave us a good scare.  It was time to change his gtube so his nurse came in to distract him.  When I pulled his old tube out, the stoma started leaking a bunch of red...which we initially thought was blood.  The nurse ran out to find a doc and I placed his new tube and dressing.  Long story short...it was undigested flaming hot Cheetos.  We still did a X-ray of his stomach to be cautious.  Owen enjoyed retelling the story with some dramatic flair for the team in rounds today.

Labs today looked pretty great.  His BNP was down to 7000 from 23000 on Tuesday.  His heart is happy on Milrinone.  The Resident asked the transplant team about discharging on Milrinone and I told them I'd be the first one to ask to get outta here on Milrinone but we are not to that point yet.  He is very high risk right now and we are where we need to be.

We did hook him up to the telebox, which is basically a traveling monitor, and walked to the playroom today.  Owen played Xbox and we grabbed a game to play tonight.  The library volunteer brought him a new movie and that pretty much wraps up our day.  I got to visit with Jennie...keep Tyler in your prayers as they have a big meeting tomorrow.  I also met another heart mom on the elevator...I'm so glad she introduced herself.  Her son is waiting for his heart and his younger brother had a transplant 4yrs ago.  It's these connections and support around me that makes the day a little sweeter.

Back home...

Kam and Ry volunteered for the Congenital Heart Walk in Tempe this morning.  It was a great opportunity for them.  I love that Kam wants to serve others and volunteer.  

Daddy took Logi to breakfast at Joes and let him run wild on the paths for a long time.  "Walka walka"... he loves to walk around and explore!  

More labs tomorrow and it's a new week. Wish me luck getting Owen to hospital school in the morning.  

Moving on Up

Today was a big day!  A new team is on rotation for the week in the CVICU and on the floor which means a new set of eyes on Mr Owen.  He saw some of his favorite doctors today and he always loves that.  We also moved on back to the 3rd floor a into a big private room.  SpongeBob was already here ready to greet us.  Owen is happy, comfortable and looks good.  

This morning, one of surgeons stopped by in the CVICU.  We are having discussions about mechanical heartware if Owen's organs start showing signs of failure.  Maeda peeked in and asked how Owen was doing and my immediate response was 'fantastic!'  I realize that this is far from an accurate description...but compared to Tuesday...it is fitting.

I'm happy to be back upstairs.  It's almost like we never left to spend the past two months as home.  We are where we are meant to be.  I can't believe we have been here 10 days already.  Owen has been waiting 164 days now...the majority of those status 1A.  Life just moves on and we keep on living in the moment.

Tomorrow we have a ton of lab work due... 

We are missing family.  I bought airline tickets for them to visit soon.  I can't wait to wrap my arms around them all.  Continue the prayers and know that they are being answered.

 

 

 

CVICU Life

Today was a pretty crazy day.  Owen had another good day so I'm excited about that!  I don't know how he slept last night with the ECMO circuit running next door and all the commotion that comes with that.  He never complained once and somehow managed to get some decent sleep.  Child Life brought him some awesome Batman headphones today because a family was saying goodbye to their litlte one.  My heart.

I had a hard conversation with the LVAD NP about options if Owen has a rapid decline.  It's not the type of conversation I wanted to have, but it needed to be done.  He is holding steady and we just pray it continues.  He looks so good!!

Allison (Child Life) brought him a doll so he could practice and go through the steps of the PICC line dressing changes that will happen tomorrow.  It used to cause him a lot of anxiety, but now he is totally chill.  We had a long chat with his psychologist today and practiced his meditation.  He is in a really good place emotionally and weirdly thrives in a hospital environment.

He is eating more and even got up to walk around a little.  I'm not sure how much longer we will hang in the CVICU, but as long as it takes for everyone to feel comfortable.  I gave up my sleep room tonight for a more critical family and I have a reserved sleep chair.  I also have a room at the RMH if Owen feels comfortable with me a mile away.  I'm pretty sure I"ll be sleeping in a room with three other strangers.. but if it helps Owen sleep better than I'll do it.

He is holding steady in a happy place and we just pray it lasts.

Kam is feeling super congested and has a yucky wet cough.. she spent the day on the couch and all drugged up on Sudafed.  I had her drinking EmergenC and Airborne with TONS of water.  She already feels better tonight.  Logi has been spending his days with Larissa and Sam (the beagle).  He is a budding artist and will color for a long time. He knows a lot of his colors and knows which color he wants.  Eek.. I just want to scoop him up and smooch on him.  Soon.

We will continue to have faith that everything will work out and that we have strength to continue this journey. I pray for our donor families everynight.  Aly's family is always on my mind.  I pray for his future donor family and each day that passes I know they just got one more day, one more kiss goodnight.  Life is so fragile.

Sleep tight.