Heart Failure

Yesterday started out as a routine cardio visit with echo.  The echo showed decreased function.  He has had some isolated symptoms...lack of appetite, low bps and we have been tweaking diuretics the last week or so.  Since he is already on fragile status, we had the teams collaborate and decide it was best to get Owen to Stanford.  Kam packed my bag, Larissa picked up the kids and Carson and headed to the hospital.  We said our goodbyes on the way to the ER.  Goodbyes are HARD!!

The ER was waiting for us and we got an IV places and labs drawn.  The case manager for the medical transport arranged and we were on our way via ambulance by 5pm.  Owen hated the stretcher but it was cool to ride in two ambulances and a medical jet to Palo Alto.  It was pouring rain in Cali which was a nice change from our 100degree temps.

We made it to the CVICU by around 8:30 and got settled in.  The AeroCare team was fantastic to work with and make the entire transport pretty easy.  We did another Echo, EKG and poked Owen a few times for labs (including an ART stick) with no luck.  By 2am, we were both totally over it and exhausted.  I found myself a private sleep space in the CVICU so I can be near Owen and not share a chair with random strangers.  Social work hooked me up until we move to a private room on the floor.

Owen is in heart failure and its worsening.  We can't take the risk of sending him to the cath lab so we are ultimately guessing what the cause is.  On the outside he seems fine.  His BNP was 15000 (norm for him is 3-4000).  We don't know if it's rejection, progressing Coronary Disease or an exact reason for the decompensation.

We started him on a three day course of pulse steroids and IV Milrinone.  He is bumped up to status 1A on the transplant list.  He is already perking up a bit which shows that his body just needed additional support.  The long term plan is unknown at this point.  We just watch and see and hope things take a turn for the better.  We are getting ready to place a PICC line per Owens request so we don't have to keep poking him.  We are both running on less than 3hrs of sleep so we are feeling like zombies right now.

Ill post more after we get lab results this afternoon because those will be telling!  I am running on adrenaline and we are all doing fine.  We will push through like we always do.  Just the other day Owen wished that he could come back to Stanford.  In the same breathe, he wishes to be able to fly on a private jet.  Two wishes granted...

Stanford Visit

We made it to Palo Alto and back in about 24 hours. It was quick and Owen was bummed we couldn't stay longer.  The team was not thrilled with his labs. His Prograf  (antirejection) levels were double what they should be and have just been all over the place lately.  His INR was double, his Creatnine and BUN were all elevated to more than double his norm.  Throw in his super crummy weight loss on top of it and we had to make some changes. 

We dropped his diuretics for the time being because he is clearly too dry.  If his kidney levels don't improve then we will have to discuss admittance to work on that issue.  Kidney's take a hit with all these anti rejection meds as it is...so we have to watch those closely. His INR and Prograf doses were changed and we will redraw all labs tomorrow morning. I'll also have to get antibody testing done and Fedex it back to the HLA lab at Stanford. 

Overall, his echo looks unchanged. We follow up with our AZ team in two week and back to Stanford in four weeks.  If his weight doesn't improve in the next two weeks, we will have to address that as an issue. The pressure is real!

I brought up dental work with the team as he does have a couple small cavities that would have to be filled in the hospital under cardiac sedation and they shot that down.  He is just too "unstable' to put him under for sedation.  We are trying out the new pediatric dentist that has hospital access today and we'll see what we can do. 

We have had lots of friends getting hearts this past week and another little guy today.  I'm so excited at their new chance at life, but so heartbroken for all the donor families.  Organ Donation is such an incredible gift! 

Thank you for all the continued prayers.  We have a BUSY month ahead and we are taking it in stride. Prayers for Owen's kidneys to recover and his heart to keep doing what it needs to do. :)

Fall Break

October is here and we finally got all our Halloween decorations out.  My kids LOVE Halloween.. the costumes, the activities, a little candy... but mostly the glimpse of Fall.  It's still 98 degrees in the Desert, but we hope it cools down by the end of the month. We have been on the hunt for a house and we have looked at about 30 houses in the past few weeks.  I don't want to jinx it, but I think we may have found our new home.  Eek!

Kam is on fall break and it's been so fun having her home!  Tomorrow we head back to Palo Alto for clinic/echo/ekg and to see the transplant team.  I'll be updating FB (Owen's Superhero Heart) with photos with my favorite travel buddy.  Kam, Logi and Daddy have fun planned at home without us. 

 Owen has continued his frequent labs and is so comfortable doing them, I joke that I'm just going to drop him off and wait in the car.  He almost doesn't even need me there anymore.  He is still down about 7lbs from when we were discharged about six weeks ago, but he looks healthy enough.

He is lazy most days and doesn't want to go out and do much.  He is a homebody, but a trip to the dollar store was motivation to get him out of the house and he picked up this sweet Ninja gear.

His appetite is up and down so much it makes me crazy.  One day he will eat a million random things and then days like yesterday he won't eat at all and what I do tube feed him, he pukes up anyway.  Sigh.  The frustration is real.  He is hanging in there and we are just so grateful to be home. 

Logi is overdue for an update.  He is 22months now and the smartest little guy ever!  He gets his massive amounts of energy from his Mama and can just go all day long.  It's a struggle to keep him busy but to meet Owen in the middle with his lack of energy.  These boys are complete opposites.  Kam usually is more than happy to chill with Owen while I take Logi out of the house and let him be wild. 

Always observant and doesn't want to miss a thing.  He loves those paper cone cups at the lab and can think of a million ways to play with it.   Rocks, dirt, cactus, leaves... he can just play forever. 

He started this new "shy" face.  Randomly he will close his eyes and bury his face until a stranger goes away.  He just started this and it's the cutest.

Hats and shoes.. he wants to be just like Daddy all the time.  He doesn't talk much yet, but does the basics.. "dada" "mamamamam" "BoOOO(kam)" "no no no no" 'Yea" "Ba" "ck (sucker, cookie)"  He makes animal sounds, names his body parts, follows directions like a pro and loves to be snuggled.  He always pulls up a chair to help in the kitchen and can't get enough housework in.  He loves it!

Every morning he grabs a pair of Owen's underwear out of his room and puts them on over his clothes.  If he doesn't have underwear, he is not dressed.  He is obsessed with all things Pentatonix!!! He knows all their songs and dance moves.. it's hilarious.  He even asks for "mitch". 

Oh what a joy and perfect blessing this little boy is!!  We are so lucky he is ours.