Busy Times

Our summer will be coming to an end very soon.  Owen is all registered for Medical homebound school.  His friends are all back to school Monday morning.  Kam starts her senior year on the 2nd of August.  I am even planning on jumping back into higher education myself.  We are enjoying the last days of lazy summer days.  It all went by too quickly but we didn't waste a second of it.  

We have been squeezing in doctor, dental and orthodontist appointments.  Logi had molluscum that just won't go away after months and months.  Our ped tried beetlejuice and it seems to be doing the trick.  He has super sensitive skin and blistered on his armpit but after a week, it's all healed up and didn't bother him too much.  Has anyone else had success with beetlejuice?

 This is our typical summer day.  I have been using clicklist with Frys to order all my groceries online and then having them load them up in my car when I arrive at my assigned time.  It is the BEST time and money saver ever!  The kids always love to go along to "grocery shop" and usually hit me up for some kind of fast food since it's a rarity around here.  Logi surprised me when he asked for a "hamburger" the other day.  My toddler is probably in the majority and just doesn't eat a whole lot, so when Logi asks for a burger, Logi gets a burger.

 Owen has thick, wavy hair and it's growing like crazy with these steroids.  He has been going to cubscouts lately and all his friends have the "comb over."  Owen has been begging me for a "comb over" style so that's what he got.  He loves it!!  It'll grow on me.

 We had terrible luck on Thursday.  I got a speeding ticket for going 10mph over on my way to Phoenix Children's for cardiology.  We had a 9am appointment, finally finished his echo at 10:30 and by 11:30 we still hadn't seen a doctor or NP.  We finally left.  Dr Z wasn't in anyway, so now we will just head back Monday morning for clinic.  We rushed to get home, packed and to the airport to find our flight was delayed by hours!  We didn't get into San Jose until 11pm.  The rental car place said they gave our car away.. "sorry, but you'll have to pay today's rate and all we have is an SUV."  After about 15 minutes of nonsense.. I got my SUV for my original rate.  We didn't get to our hotel until after midnight.  What a day.  Glad this little travel buddy can laugh it off with me.

 We have been trying to schedule Neuropsych testing for over a year now and I'm so glad we finally got it done. Owen said it was super challenging... "I LOVE a good challenge!"  He had the best time.  She will score him and may call us back in August when we are there for biopsy to come in and do a little more if needed.  We should have a full report in the next 4-5 weeks with a written report for Owen's school.  This information will be valuable when we are working on his IEP and come up with a plan to get him caught up in school.  With a history of hypoxia (low O2 saturations for his first 5 1/2 years with high flow oxygen at times), hours spent on bypass, ecmo and cardiac arrest..  we want to make sure we aren't missing anything.

We finished with testing a little early and had a little time to visit friends at the hospital.  Owen loves to turn every corner in the hospital and see a doctor, nurse, iv tech, or family that he wants to chat with.  We got to say good luck to Cam Harris as he was wheeled off to get his new heart!!  We visited Debbie in the CVICU as she is post op from her heart transplant.  We found out another little girl around the same age got her transplant a few days before Debbie.  We still have a few friends waiting for hearts and we got news of a couple heart friends that have passed away.  Sebastian has been gone for a whole year and I will never forget him or being there on his final day... we may have ate pickles and apples for him   My heart is so sad for all these families and while we celebrate the new life that our friends (and we) were gifted with... we grieve for the donor families.

We are so blessed by each and every experience along this journey.  The people we meet, the heartache, the celebrations, the fear... it's life changing.. for the better.

Four Years

 Four years ago, we kissed this little boy goodbye as they wheeled him into the operating room.  He had a half a heart (HLHS)... it was failing and we were maxed out on oxygen and meds (iv milrinone) After waiting 327 days on the transplant list, my little blue boy would finally have a perfect heart and be PINK.  Thanks to the most precious gift from Aly's family, Owen was given a chance to LIVE and be healthy.  We had no idea what was in store for us over the next four years.

He had a fantastic 18 months post transplant with no rejection, and even attended first grade.  Then it was a ripple effect of biopsy negative rejection, ECMO, coronary disease, cardiac arrest and 10 months inpatient waiting for retransplant.  We have felt every emotion from guilt to grief and then gratitude for the wonderful 3 1/2 years we got with his first gifted heart.  Thank you to Aly's family for saying yes and for giving us many memories with our sweet Owen. 

Progress and Goals

It has been another busy week and we are so happy to be living life.  Owen is kicking butt in physical therapy and is working so hard to get stronger.  He still has so far to go, but is determined to get there.  He does his exercises at home everyday with Kam while she works out.  It's a long journey for this future Ninja Warrior. 

 

This little munch is on the go 24/7.  He has decided that naps are for babies and he's a big boy now.  He also decided he was tired of waiting around for me and potty trained himself this week.  He started taking off his diaper every time it was wet and going on the potty and now he just goes. Easiest potty trained kid yet.   Now if we can tackle sleeping in his own bed... we'd like our bed back. 

Friday night was a dream for Owen.  I had purchased DanTDM (famous YouTuber) tickets when they went on sale a while ago.  Owen was counting down the days for the live show.  Kam took him and he had the best time!  There were challenges, creative video games and Owen was completely entertained.  He got his first concert Tshirt and loves it.

I am so proud of Kam.  She has been eating super clean, tracking her intake and working out everyday to reach her health goals.  She has done a ton of research on her own and is learning so much about nutrition and food prep.  She has reached all her goals she set for herself in June and is now setting new ones.  Now she has me on board and keeps me accountable.  Now if we can get these boys on board.  If you ask Logi what his favorite vegetable is.. he responds with "chocolate cake".

 My kids have no problem relaxing and enjoying their summer break.  School starts in a couple weeks for both kids and then it's back to the grind. 

 

I still need to post about our fabulous 4th of July weekend but my iphone went in the wash with my sheets this weekend and it hasn't decided to come back to life yet.  Here's hoping...

Biopsy #9

Whoa... I am exhausted. We escaped the desert heat and headed to Pinetop for the first weekend in July.  It was wonderful and I'll do a post about that tomorrow.  Unfortunately, we had to fly out on the 4th of July to be ready for a first case biopsy on the 5th in Palo Alto.  Owen was thinking he would miss all the firework shows and was pretty bummed.  As we were landing in San Jose, we saw every firework show for miles.  It got better as we were driving into Palo Alto because we caught the finale of the Great America theme park show.   It was all pretty amazing!

 

Owen headed back to the cath lab by 8:30 and was out really fast.  The plan was to measure the pressures in his SVC narrowing and possibly intervene and we planned to recover in the short stay unit.  I was surprised when he was done so quickly.  The cath team and the transplant team were slammed and we waited in the PACU post biopsy (and echo) for a long time.  We finally were discharged from the PACU and headed up to the heart center to see our team in clinic.  Owen's pressures looked great but they didn't do anything with the SVC...communication error or oversight.  So we will tackle that next month.  He did get a massive "hickey" as the nurses and I called it (broken capillaries from a reaction to the surgical tape) and then he asked "what's a hickey?"  Crickets...

 

Owen's labs looked great, aside from his liver function, which shows his ALT and ASTs very elevated. Our favorite pharmacist looked at all of his meds with the team and the only thing we can come up with is when he started Asprin a few weeks ago (due to the SVC narrowing), we started seeing things elevate.  So we'll drop a couple meds and do a liver/gallbladder ultrasound early next week with follow up labs.  It's always something going on with this guy. 

 

The best news was ZERO REJECTION!  His heart is happy and all of the other things we will work through.  His appetite is getting better and he's gaining a little weight (up to 51lbs) and is growing (50.5"). 

 

We spent the night in Palo Alto and headed home this morning.  It's nice to be home and we have a busy weekend planned.  Stay tuned..