Life as a Leach

Nothing has changed, and yet everything has changed.  Abby is still healthy and able to do a full day of school at home with frequent breaks.  We are still washing are hands constantly, have hand sanitizer mounted on the wall at every entrance and at the door of her bedroom, and change our clothes the second we come home when we have been in close contact with people.  She is still skyping with her class most every day and able to interact some with the other students.  I am still dealing with the day to day insurance issues, medical phone calls, and specialists' appointments.  And yet, it seemed like everything changed in that moment after Dr. C. said he felt the risk of putting the rod back in was too great.  I cried most of the way home and felt like I'd been sucker punched.  Caleb, who understands the magnitude of this decision, shed his share of tears as well.  Dr. C. didn't directly say that he would never do it, but it was clear that un...

Today did not go well. Dr. Campbell thinks putting the rod back in could disrupt everything and be too much of a risk of infection.  Her last 2 CTs show that her lung volumes are basically the same, so he feels she is stable.  We voiced our concern that she is not functionally the same, but he thinks the risks outweigh the benefits.  He wants to do another ct in May to measure lung volumes then. This is all we know and we were completely blindsided.  The nurse practitioner was just as shocked as we were because she thought we were getting a date today too.  Turns out, we are going to be waiting even longer and she may not even have the surgery at all.   We are devastated, to say the least.  This left us reeling.  We will pick up the pieces and keep going, but today we are heartbroken to hear this news.

Today did not go well. Dr. Campbell thinks putting the rod back in could disrupt everything and be too much of a risk of infection.  Her last 2 CTs show that her lung volumes are basically the same, so he feels she is stable.  We voiced our concern that she is not functionally the same, but he thinks the risks outweigh the benefits.  He wants to do another ct in May to measure lung volumes then. This is all we know and we were completely blindsided.  The nurse practitioner was just as shocked as we were because she thought we were getting a date today too.  Turns out, we are going to be waiting even longer and she may not even have the surgery at all.   We are devastated, to say the least.  This left us reeling.  We will pick up the pieces and keep going, but today we are heartbroken to hear this news.

Tomorrow, Abby has two appointments at CHOP.  We will see plastics first, then orthopedics.  If all goes well and her wound is officially cleared, we will get her next surgery date to put the VEPTR rod back in.  We are hopeful that this will be sooner than later!!  We would appreciate your prayers for wisdom of our surgical team, as this surgery will be even more complicated than usual.  The combination of Abby’s lung failure, scar tissue, and kyphosis make this surgery a challenge and we are very thankful that Dr. Campbell is willing to do it.  He doesn’t give up on kids and for that, we are so grateful.

Dear Caleb, 11!  Wow!!  How in the world can I have an 11 year old?!?  This has been a big year of growth and experiences for you.  I love watching you mature into the young man God created you to be. This last year, you have really come into your own.  You joined the Musical Theater Club and earned a speaking and singing part in The Little Mermaid.   I was so proud of you up there on that stage!   This year, you are playing Lefeu in Beauty and the Beast  and are doing such a great job.  It is fun to watch you develop as an actor and singer.  You absolutely love to sing and can often be heard belting show tunes from the basement.  In fact, as I type this, you are singing "Defy Gravity" from Wicked ! You're also doing a great job playing the trumpet and were chosen to be part of the All-County band this year.  You are following in your dad's footsteps!  Who knows--maybe you'll join the marching...

A new video was published today about Thoracic Insufficiency Syndrome at CHOP.  So many of our friends are in it, as well as all of our surgeons, doctors, and nurse practitioners with the Center!  It's almost a family reunion video for us!  Of course, our beloved Dr. Campbell is at the center of the story because he is the amazing creator of the VEPTR.  So many families are watching their children thrive, thanks to his brilliance and compassion.  He is a wonderful man. If you are interested in learning more about Thoracic Insufficiency Syndrome and how it affects kids like Abby, please watch the video.  The VEPTR life is hard, but it gives us so much hope for the future.