Biopsy 7.. I lost count.

We made it home after a very busy three days in Palo Alto.  Owen's biopsy went perfectly and he received another zero rejection score.. yay!   His pressures were the perfect and his labs all looked good.  The exception was the Prograf (anti rejection) level.  We have had daily labs trying to get that one stable.  We'll get there.  Owen did his chest xray to get a new baseline and then we headed to dermatology.  Owen has Keratosis Pilaris and the steroids were making them inflamed and it looked like a little folliculitis on his upper arms.  We'll see Dr Z at PCH next week and then back to Stanford in two weeks.  He has grown a half inch and is now 50" and his weight has hit a plateau of 55lbs.  Much better than the 46lbs he was at transplant.  All good things!

 

Exactly one year ago, he was going to the cath lab at the exact same time, to get his stent placed in his coronaries.  Just 24 hours later, he suffered a cardiac arrest and I thought his fight was over.  I signed consent to take him back to the cath lab knowing he was probably not going to make it off the table.  I don't think anyone there that night thought we would have made it this far.  It's such a miracle to see him today.. how far he has come.  We are feeling blessed.

Palo Alto and School is Out!

Last night, my frequent flier and I headed back to Palo Alto.  It has been so great at home and we already miss our family.  Owen has been doing great!  His echo looks great and he is staying healthy.  His Prograf (anti rejection) level has been extremely high for no apparent reason, so there have been frequent labs.  Thankfully, he doesn't hate labs.  We need to get this level back down, it's more than 3 times what it should be and it can make his Kidneys angry.   We met with Dr Z at PCH last week and clinic today at Stanford.  All looks good!  A chest xray and dermatology appointment scheduled for Wednesday following his biopsy in the morning.  
We've been busy at home.  I met with the district Special Ed Director and we set up a gameplan for school in the fall.  We will enroll him in our neighborhood school and they will have a teacher hired by the time school starts in July.  He will start Medical Homebound and that will give us time to do his benchmark testing, do his service evaluations and get his IEP updated.  Then we will go from there.  He is excited to work on some curriculum this summer and do lots of reading. Kam's last day of school was today and she is officially a SENIOR!!!  How did the time fly by so fast!?  I am going to soak up every minute of our summer together at home.  The fall will bring college tours and scholarship applications and then paying deposits on dorm rooms.. gasp.  Let them stay little.
Gpa Todd's work sent Owen a goody basket and Gma was taking pics to send Thank Yous.  Logi was our little photo bomber.
We have had a lot of sickies in our house since we have been home so we are laying low.  Carson got a nasty virus that took him down.  Logi had a week long stomach virus that he is finally over, or at least we thought until he spiked a fever today.  Kam has had a chronic cough and acid reflux.  Owen and I are somehow avoiding it all and  my house smells of bleach.  Nothing beats being home.

Until tomorrow..

Mother's Day

It has been a dream to be home with my family.  I am exhausted from a crazy year and today it caught up to me.  I woke up at 5am with Logi, went back to bed until Mother's Day breakfast was ready and then back to sleep until noon.  I feel great now!  We spent the day with my family and it was wonderful!  My Dad and Rog cooked some amazing ribs, wings, and all the fixins.  Owen was in heaven and ate more meat than I thought he could ever consume.  My sister and her fam came over and we haven't seen them since forever.. almost a year I think.  The kids had a great time with their cousins and we all had some catching up to do.  This evening Kam made treats and we all snuggled on the sectional in the play room and watched a movie together.  The house is quiet and everyone is tucked into their beds. 

  I feel blessed and incredibly happy.   Happy Mother's Day!!

HOME

We made it HOME!!!  

The team had a conference on Thursday and discussed all the transplant cases for the week.  They told us no promises and they don't send patients home until about 3 months post transplant.  Our NP called me at 3pm on Thursday and said "you can go home!  Happy Mother's Day!"  There was plenty more to our conversation but that was the important part.  We started packing and packed some more.  We flew up two months ago with one small suitcase on the medical jet..but somehow filled the trunk coming home.  Good thing I already purchased Carson's airline ticket to fly into San Fransisco on Thursday night... he flew up and drove home with us early Friday morning.

 

It was a long 12 hour drive and Logi puked three times.. poor guy.  We are settled in at home all together.  The boys are thrilled to be back.  We've lived here six months and have only spent a week in our new house.  There is so much to do and I am going non stop, but it feels good. 

 

Our journey has been a crazy one and we have no idea what's in store for us ahead.  We have plenty of clinic visits and already scheduled a trip back to Palo Alto in less than 2 weeks.  For now.. we will enjoy sleeping in our own beds.. together.

 

Carson also just let me know this was the same exact day, two years ago, that Owen was released from Phoenix Children's after his five week stay following his ECMO run.  Guess May 12th will be considered a blessed day for us.

Before we left, Owen picked out this pretty bouquet of flowers for me for Mother's Day at the RMH.  He was beaming!!
We are so blessed, happy, and our prayers were answered.  Please keep all our friends that are still in the hospital or RMH waiting for their hearts or recovering.  There are too many to name, but we are praying for each of them and anticipating their updates.  Also, praying for all the moms who have lost their babies as Mother's Day is tomorrow and I can't imagine their pain.  Happy Mother's Day to everyone!!

Biopsy #6.. ZERO Rejection

It has been two months since transplant and Owen is doing fantastic!  It feels like a lifetime ago that we were inpatient waiting for months, not tolerating feeds and no energy to go for walks.  Now he's driving me crazy with his wild energy and eating is certainly a non issue.  I am in no rush to wean off the steroids... great appetite and those cheeks!  I love them a little more than Owen does. 
Monday morning was biopsy number 6 and Owen was amazing.  There is a no sibling rule in the pre op holding area and the Patient Recovery room.  With Logan in tow, it meant that Owen was gonna have to be a big guy and head to the cath lab solo, no Mom in scrubs.  It's already pretty great that he can head to the cath lab without any anxiety meds on board.. but to go in solo was taking it up a notch.  Of course he was super awesome, didn't complain and said "I've got this!"  He headed back with anesthesia and I'm sure chatted their ears off until he was asleep.  He was wheeled into recovery and I sent his snacks and ipad back to him.  Nicola watched Logi for me in Cam's room (heart moms to the rescue), while I headed back to check on Owen and get an update from the team.  Owen looked great and was happy to be chatting with his nurse.  Owen took his own IV out and we were outta there.   
His pressures looked fantastic (right atrial pressures were 4 and the wedge was 8) and I just received a call with a ZERO rejection score!!  We are so close to home. While Owen was busy being brave, Logi and I played outdoors.  He is happy running around, climbing on top of tables, sitting on the floor and anything to make this germaphobic mom cringe.  Love this little rugrat!
Today we had an early morning Transplant clinic with echo.  Owen's ECHO looked perfectly normal and got a great report.  All his labs came back looking perfect and seriously things couldn't be better.  The team will meet on Thursday morning and we will find out when we can go home.  I am trying to not get too excited but to take this little chipmunk cheeked, healthy boy home would be a dream!!

Happy May.

How has an entire week past?  I haven't been online much because these boys are keeping me on my toes.   We have been doing a whole lot of nothing major, but it feels like we are going non stop.  Owen has had PT, clinic appointments and labs.  Everything is going perfectly and we couldn't be happier.  His labs are all within range, we haven't used his gtube in over two weeks (he's growing) and we had pretty great clinic appointments overall.  He has been working hard in Physical Therapy and walks everywhere now without getting too exhausted.  His little legs are getting stronger and it's great to see his increased endurance.  He is breaking the tooth fairy by losing six teeth in the last four weeks.  It's going to be time for braces really soon!   This upcoming week will be a big one.  Biopsy on Monday, followed by transplant clinic on Tuesday, the doctors will meet on Thursday and discuss when we can go home.  Meanwhile, we are working hard on homeschool curriculum and I am still trying to decide what to do for schooling in the fall.  Do I enroll him in 3rd grade since he has missed so much school this year, or do I just enroll him in 4th grade and catch him up over the summer.  This boy is wicked smart and retains everything so I know if I keep on him, he will be caught up by the fall.  We will still do some benchmark testing in the fall and update his IEP before he starts school to set him up for success.  I also set up Neuropsych testing at Stanford this summer and that information will be very helpful!!   This little guy had a week full of coughing, congestion and puffy eyes.  I took him to urgent care on Saturday and again on Monday to rule out any infection or virus.  We did get antibiotic drops in case pink eye developed with the puffy, watery eyes, but I haven't had to use it.  The consensus was allergy vs virus, but I treat everything like a virus, which meant bleach and washing bedding every day.  I washed our hands so frequently and it must have worked because he is feeling much better and both Owen and I stayed healthy!  He is getting allergy meds so that may be why he feels better.. I'm just glad he does.

Then last night he had a wicked night terror, something I have never witnessed before with any of my kids.  He woke up at 2am and just started screaming as loud as he could.  He was biting his arms and fingers, stomping up and down and was terrified of me.  He was not responsive and I seriously almost called 911.  I had no idea what  was happening.  Poor Owen was trying to get him to calm down and he was just hysterical for about 15 minutes.  I'm certain he woke up half the RMH.  Then he just woke up out of it and was super snuggly and went back to bed like nothing happened.
On a happier note.. BINGO night was Tuesday and Owen won Logi a tumble train.  The boys love this crazy train that rolls all over the room causing a ruckus.
I was uploading photos for this blog post and found this number.  i guess someone figured out how to download snapchat while mommy was showering.. I don't even use snapchat.  Random.
The rest of the week we have been enjoying the weather by exploring new parks around Palo Alto, finding new places to eat and time is passing us by.  We can't wait to get home and be together with Carson and Kam. I'm not looking foward to the triple digits.. we have been spoiled by the weather for so long.


Back home... Carson is working hard, paying bills and keeping things together.  Kam is busy with school, SATs are Saturday and she had dance concert week all last week.  I was so bummed to miss it, but Carson and my family were there cheering her on!  I'm so grateful we have one more year with her at home before she heads off to college.   Also i'm super proud that she made it into Summer Scrubs through U of A again and also received the scholarship.  It's a week long crash course into med school and it's a competitive selection process.  She is going to love it!   Proofreading through this post I am just so happy and proud of our little family.  For all that we have overcome.  It didn't break us, but made us that much stronger!!