Halloween 2016

We missed some of our favorite Halloween traditions today, but we managed to make it fun anyway. Owen woke up late, took a bath, and then the docs rounded. We are just monitoring to see where things are going. He had an echo this afternoon and I'm sure I'll hear the results in rounds tomorrow (no news is good news?). We are just finding balance before making big plans. 

 Today was the big Halloween trick or treat at Stanford. They set up an entire lounge with costumes and the kids could pick anything they wanted. Owen already had his costume but we had fun looking. On the way back to his room, we stopped and got a dragon airbrushed onto his biceps....so cool!  Every department sets up tables on every floor of the hospital and kids go from table to table getting tons of loot.  It was a madhouse but we got through all four floors with two giant bags of stuff!  Thank goodness his nurse was required to go with us for monitoring because I could not have done that solo. Owen had fun, but was totally exhausted!

When we got back to the room, Owen slept through his echo and then took a two hour nap.  I ran to the RMH to check in and get my room key.  It always makes me nervous when he sleeps a ton, or says his stomach hurts, or when he just looks so tired.  I've been a little on edge today and I'm anxious to hear what his echo looked like.  Are we making the right choices with his medicine therapy?  I just want him to feel good

We did dump out all his bags and go through his loot this evening.  We talked to the fam back home as they were getting ready to trick-or-treat.  It was hard for both of us because we miss home already and it hasn't even been a week away.

Kam was steam punk and rocked it!  Logi was bones since he is obsessed with the bone song.  "The foot bones connected to the ankle bone..."  Future doctor perhaps?  They all had a great time with cousins.  Logi was in love with the candy and waving goodbye to everyone as they left each house.  He was just thrilled to be walking around at night people watching.  He is my active one!  

That is a wrap on Halloween and now we can move into the best holidays of the year.  Hoping for a healthier Owen and to be reunited with my fam soon.  This is hard.  

Owen was tired before 8 and fell asleep early.  Again...I may be on edge.  Then there was a code blue next door for a parent of a young patient...on edge.  Tomorrow is a new day and we will see how it goes. :). Happy Halloween!
 
 
 
 
 
 

 

Pumpkin Carving

It was a quiet evening, minus a few alarms gone wild. Owen slept in until 9:30 and we had a boring morning. Rounds were the normal chit chat of how he looks warm and well perfused doing well on Milrinone. The team will discuss Owen tomorrow morning and come up with a longer term plan. I gave my input on how I'd like to see things go and we will see what happens.

 Owen and I went for a long walk around the 3rd floor but he was bored and ready to go back to his room. I forgot how long the days are in the hospital. Throw in a little roid rage from Mr Owen and I am ready to lose my sanity.  We did get his PIV removed from his wrist...that was unpleasant. 

The Binghams saved the afternoon by bringing pumpkins to carve!  Owen wouldn't touch the guts or actually carve the pumpkin, but he did stab it with a saw a million times.  

It was fun to visit and we got the chance to carve pumpkins which Owen was bummed we were going to miss out on. 

I hear Stanford goes BIg for Halloween, so tomorrow should be fun.  Gage has his Heartmate in a backpack keeping his heart going while he waits for his new heart...Almost a year and counting. Two tough little guys.  We have another friend in the OR downstairs getting a heart right now as I type this. Organ donation is such an incredible gift!

Happy HallowEVE.

 
 
 

 

 

Moving on Up

We both had a great night sleep and got plenty of rest.  Until 5am, when I woke up with cramps in both calves.  Since Carson wasn't there to massage the knots out, I jumped up and stretched for 10 min to get it to stop.  Just then, Owens nurse called to let me know he wanted me.  Turns out he just wanted readjusted and went back to sleep until 9.  I figured I'd go find a shower in the hospital before everyone else woke up.  We drew labs off his beautiful PICC line and all his levels looked great (Chem panel, prograf and INR).  His vitals have been stable and he seems to really be responding well to the Milrinone.  He still has one more night of IV steroids (in case it is mild rejection) and hopefully his roid rage will end!

The best news of the day is that we moved out of the CVICU and headed up to a private room on the floor.  Owen slept through the transport and just woke up to watch movies.  I'm sure he will be up all night, but I have a couch in his room to sleep on so he can party all he wants...quietly.

 
We don't know what the plan moving forward will be...we have lots of conversations this week with the team about a long term plan.  We have options and Owen seems to be in an OK place.  We caught the heart decompensation before it got too bad.  Always follow your gut instinct..:Always!  I am grateful that our Phoenix team was so proactive in getting us transferred.  We have many angels watching over this boy...especially Aly.  Owen always tells people his superpower is Regenerating Abilities because he just keeps overcoming the odds and he heals so quickly...I would say Bravery...but what an awesome combination!

 

PICC Lines and Sedation

Today was a rough day.  The morning went well enough.  Instead of poking Owen for labs again, we figured a PICC line would be a better option for long term access and blood draws.  Easier turned into a long day!  It took vascular access 3 tries, Interventional Radiology 1 try in the room and then it took another attempt in the IR and we finally got a PICC line in.  Thankfully we had plenty of Ketamine and Versed but we had to watch him so carefully with all the sedation and he felt awful all day as well.  I'm sure tomorrow, his arms will be very sore. :(. 

His labs that did come back look decent.  His BNP was in the 20000 range but aren't reflective of the Milrinone in his system.  I am hoping for better results tomorrow.  He will get his second IV steroid dose tonight and we should be starting Milrinone as soon as his Blood Pressures come back up and the sedation wears off.

I am exhausted and hoping for some sleep. I'm running on empty from only 3hrs of sleep last night and a VERY long day.  I have a constant nauseated feeling that won't go away and comes with having a very critical child.  I am sitting in my sleep closet right now during nurse shift change and trying not to close my eyes and drift off.  Owen slept a lot today so I hope he will also get some sleep tonight.  Our roommate is a grown man and he stayed up ALL night and day.  Praying we get out of ICU soon and into a private room on the floor.  

Back home...  Carson is holding down the fort.  Kam went to school but was super anxious about everything.  Logi had fun with Sussy but he was missing Mama tonight.  This is hard.  I'll do anything if it means Owen recovers again.  He keeps praying for a new heart to come so he can just feel better again.  It's heartbreaking.

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.