Recovery & X-rays

Owen was so excited to have an inpatient stay on the cardiac unit.  He spent many months with these nurses and it was so fun catching up!  He rapped for a few of them, gave life updates to others and his room had a steady flow of attention.  Owen complimented our cath lab NP on his scrub cap and he took it off and gave it to him!  He told Owen to wash it first and of course, he put it on.  Pretty sure he is going to rock the cap in every cath moving forward!  He loved every second of it.  We got the only shared room on the entire floor and have a baby roomie, so hoping for some sleep tonight!  

Owen had a late night X-ray tonight to check placement of his stent and coronaries.  I geek out on this stuff, but check out all those coils from his early years as a hypoplast!  The stent in his SVC looks massive!  You can see a couple tiny dots on his heart where those fistulas were closed off today.  Look at those beautiful clear lungs.  Ok, I’ll stop.  It was fun to wander the halls of the old hospital and the new one, late at night.  

We are heading to bed before midnight.  That is a win!

4Yrs Post Transplant Catherization

 

Dusting off the blog for an update...

Owen had his annual cardiac catherization this morning to check for rejection.  His right and left ventricle pressures are great!  The NP came out about 30 minutes into the cath to get consent to balloon his SVC and said he has coronary artery fistulas that need closed.  I signed consent and researched fistulas on google.  

Four hours later, Dr Peng came out and showed me videos on her phone.  She had to place a new stent in his SVC as it was placed when he was 5 and widened again, when he was 9.  That looks beautiful now!

His coronary fistulas are crazy on video and I should have asked her to send me the video.  She couldn’t coil the fistulas off, but she used discs?  It took a while and they were difficult to get to, but one big was was closed off and now those coronaries have blood flow.  The other big guy on the right side of his heart had to be removed and left open for now.  This may make zero sense, I am hungry and tired.  

Basically, we earned a night on the cardiac floor, Owen will be stoked when he wakes up!  Thanks to Traci Robb, she coordinated new flights and hotel accommodations.  

That’s the update for now.  Frequent biopsies continue because Owen apparently likes the hospital too much.  I actually feel so much better writing this out and it’s cheap therapy.  Thanks for reading and praying for our boy!

First Day of School - Covid Style

Today is the first day of school for these boys.  We enjoyed every minutes of our summer break and it doesn't quite feel like school is back in session.  Due to the high cases of Covid in Arizona, all schools are online through October (as of now).  Owen had already decided on doing his online public school program that he completed for 6th grade because it worked really well for him. He likes to sleep in, moves slowly in the morning and then logs into his courses around 11am.  He usually completes his online course responsibilities first and then logs off to work on everything else.

  Logan planned to start a half day Kindergarten program, but online zoom sessions would be a nightmare with him.  He has a lot of energy and has to be actively engaged in his learning.  We decided to go with the same online program for Kindergarten, that Owen is currently enrolled in.  It is a lot of hands on learning with phonics books, white boards, math manipulatives and lots of fun flashcards.  They sent me about 10 boxes full of engaging curriculum and he is so excited to get started!  I guess you could say I am homeschooling since he only spends about 45 min online in the morning to start his day with his teacher and classmates before logging off to learn.

We are excited to adapt to all the new changes around us.  This school year looks different than we anticipated and it's okay.  It is going to be a busy school year for all of us!  I did not forget about Kam and fully expect to post all about her next week for her final year at ASU.  I'll give you an update on how she is doing.

I still have a couple weeks until Nursing School starts back up in full force and still have zero idea what it will look like.

HAPPY FIRST DAY of school to these sweet boys and I am so excited to play the teacher role!

KINDERGARTEN

SEVENTH GRADE - I cannot believe it!