Monday, January 22, 2018

Nothing and Everything

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 unless something significantly changed, he was not comfortable taking such a big risk.  We also know that a change in her health status that could warrant taking the risk could also mean she would not be stable enough to withstand such a major surgery.  It is such a difficult balance.

Her lung volumes were the same with or without the VEPTR rod, according to her CT scans.  We argued that functionally we see a major difference without the rod.  Regardless, those lung volumes are TINY and were measuring at about 10% of what they should be.  There's a margin of error with any of these tests, so that is consistent with her pulmonary function test putting her lung volume at 15%.  Translation:  the girl is in lung failure and we hate it.

While we were initially angry at being blindsided by this news, we also appreciate that Dr. C. recognizes the risks and isn't taking his decision lightly.  We know that he has studied her chart carefully and has really weighed the options.  We just wish there were more options.

A trach is no longer an option because of the fusion in her neck.  We confirmed that with her ENT a few weeks ago at her appointment, and it just isn't doable.  Now that this surgery is off the table, the only option we have left is to keep Abby as healthy as possible.  This means continuing to be on lockdown.

This is a tough way to live for a vibrant little girl who loves people.  She shed a lot of tears again tonight over missing school and hating her lungs.  In those moments, there's really nothing I can say except promise her that I am doing everything I can to get her healthy enough to go back to school.  But what we have been doing is proving not to be working.  Her lungs aren't improving and she is still in need of bipap support multiple times a day. 

We've considered going for a second opinion in Boston, but the truth of the matter is that Dr. C. is the #1 surgeon for difficult cases like Abby's.  We are pretty sure that if another surgeon looks at her file and sees that she was with Dr. C., he/she will defer to him.  Likewise, Dr. C. has very valid reasons for not wanting to do this and we would be devastated if we pushed to have the surgery and an infection became deadly.

So, for now, the plan is to keep Abby as healthy as possible and reassess her lung volumes with a CT in May.  She has a pulmonary appointment in February and we will see if she has anything to add, but right now we are "staying the course"...which is a course on which we would rather not be.

We appreciate your prayers and words of encouragement.  We are all hanging in there!

Wednesday, January 10, 2018

Not the News We Hoped For

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.

Not the News We Hopes For

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.

Tuesday, January 9, 2018

CHOP Day

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.


A Letter to My Son

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 band in a few years!



You are still really enjoying fencing and being a part of a "team."  Your fencing group is made up of so many different ages and you really enjoy fencing a variety of ages and abilities.  I love that you have found a sport that you enjoy and is so unique.



 Ever since you were a baby, Daddy and I have prayed that you would love God.  We are so thankful that you have given your life to Him and that you have a passion for Christ.  Right now, you want to be a missionary when you grow up.  Even if you end up choosing a different career, there is no doubt in my mind that you will be sharing Christ with others in whatever you do.


Buddy, we are so thankful for the way you love your sister.  You have such a heart for her and it makes me smile when you two are together.  You know it's a special bond when you beg for a sleepover in her room every Friday night!  You are her fiercest protector and biggest cheerleader.  I know you worry about her, but you are her champion.


During your 11th year, I look forward to more musicals, band and chorus concerts, Star Wars conversations, and many more books read!  I love you Caleb!!  You are a great kid!

Love,
Momma 


Wednesday, January 3, 2018

Why We Press On

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. 

Sunday, December 31, 2017

Goodbye, 2017!

Yes, I do still have a blog!  I know I’ve been MIA here for a while, but I figured a New Year’s post might be a nice way to get back into it.

We had a wonderful Christmas and were thankful to be home.  It is definitely a unique perspective when you spend so much time in hospitals!  Our break has been slower than usual with much less “going,” which is a nice change of pace. 



I would be lying if I said that I loved 2017.  It was tough—probably the toughest we have had. Abby spent time in the hospital for 7/12 months for repeated rod infections and a large wound that just wouldn’t close, and losing the rib rod proved to be catastrophic for her.  The rib cage collapsing wreaked havoc on her tiny little lungs, putting her in lung failure.  All of this also had a profound effect on Caleb, who hates when we aren’t all together and worries so much about his sister. 

But I learned a lot this year too.  One of the biggest lessons was not to get too comfortable in your situation, because it can change at any minute.  Abby did fantastic in 2016 and we were thrilled with her progress.  We thought the hard days were behind us...and then this came along.  You can’t count on modern medicine, or good days, or health...all you really have is God.  Thankfully, He is truly all we need and He carries us through some really tough months.

There were some highlights of 2017 though, despite the hard times.

January:  Caleb turned 10 and had a laser tag birthday.

February:  Abby had her first school presentation, teaching her class about red pandas.

April:  Caleb performed in The Little Mermaid as Grimsby and had his first solo!

May:  Abby got her halo off after 5 loooong months and we enjoyed some warm days at our local beach.

June:  Caleb went to a day camp with his cousin.  Since Abby couldn’t go as planned because of her health, we had camp here!  Each day had planned activities and a surprise playmate to enjoy them with!

July:  We celebrated Matt’s birthday and visited The Adventure Aquarium in New Jersey.  We got to see an adorable penguin up close!

August:  Caleb participated in a performing arts camp and Abby had lots of cousin time!

September:  With the start of school, Caleb began 5th grade and Abby began 1st grade with the home-hospital program.  Her wound FINALLY closed at the end of the month and she enjoyed her first real bath in over a year!  She also started piano lessons, which she really enjoys.

October:  Abby turned 7 and celebrated with a trip to see The My Little Pony movie.  The kids went trick-or-treating for the first time!

November:  Caleb was selected to be part of The All-County Band, which he was really excited about.  We enjoyed Thanksgiving with family.  Santa gave us an early Christmas present of tickets to see The Lion King musical!  Everyone loved it.  

December:  We were chosen to participate in Fantasy Flight, which took us to the North Pole to see Santa!  It was pretty amazing and definitely a precious memory.  We celebrated Christmas together and favorite gifts were:  Kindle Unlimited (Caleb), a Kit doll with her dog (Abby), knobs for the kitchen cabinets (Julie), and tickets to see Les Miserables (Matt).  

In 2018, we are looking forward to Abby getting a surgery that will hopefully improve her breathing enough that she can go back to school.  As always, we are excited to see Caleb perform in band and chorus concerts, as well as Lafeu in Beauty and the Beast. He has become quite the performer and we love to see him develop as a musician, singer, and actor.  We are hopeful that Abby’s health will improve so that we can take a special vacation as a family this summer and make more memories!

We are thankful for lessons learned and precious memories, but we are certainly ready for better news and health in 2018!  Here’s to new beginnngs!