Friday, May 16, 2014

Medical Update

We met with anesthesia today.  Although we weren't supposed to meet with a doctor (we didn't know this until the day before and were rather irritated about that!), once the nurse practitioner heard about her airway issues, she got an anesthesiologist to come speak to us.  We were really impressed with the doctor, who acknowledged how educated we are on Abby's issues and immediately started working on the game plan.  In just a few hours, she had orchestrated everything and was able to secure an OR so that Abby could be intubated there rather than in the MRI room.  This is much safer and allows the anesthesiologist to have everything he/she needs to perform a fiberoptic intubation.  This is the only type of intubation that Abby can have (she has never been successfully intubated, but our Ent tested this out and felt that this was our best bet.), so having everything set up is very important.  We were pleased with how serious this doctor took Abby's case and with her efficiency!!  I love efficient people. :)

There were a few glitches with what else was going to be done at the same time as the MRI, which resulted in a few elevator rides to other floors, but we got that worked out.  Abby also had to get some surprise bloodwork that resulted in some tears, but the magic tutu helped her be brave!

The MRI, ct scan, pulmonary functioning test, and X-rays will take a total of 4-5 hours.  (MRIs are usually much shorter, but this is a dynamic MRI and takes a lot longer).

We are on our way home now.  It was a long day, but we are glad we were able to talk out the plan and get everyone on the same page.

Our next appointments will be with the general surgeon and the MRI on the 28th-29th.

Sunday, May 11, 2014

Friday, May 9, 2014

Baby Snuggles

We met a pretty adorable little guy recently!!

Abby was totally enamored with Baby E!

Caleb held him for a few minutes too, but Abby was the real Baby Whisperer.

Abby did get a little jealous at the end.  Alright Momma, that's enough!  Pick me up!

Congratulations, Erin and Andrew!  Your life will never be the same, and you'll love it!

Thursday, May 8, 2014

The Gift of Love by Amy Clipston

I have a question for you.  Are you an organ donor?

Now, before you freak out at the thought of not being buried with all of your parts, just remember... You'll be dead!!  You won't notice!!!  And your organ could save the life of somebody's mother, son, or father, daughter.  You could literally give a life-changing gift to another family.  

I recently read The Gift of Love, which was a story about a family's kidney transplant journey.  In this case, the author was actually part of a paired-donor program where she donated a kidney in order to get her husband a kidney.  Although the journey was long and hard, Amy Clipston now has her husband back and is enjoying "normal" life again.  It was a beautiful account of how a selfless act can change a life, and I found myself tearing up at several points in the story as Amy poured emotion into her writing.

This lovely story really reminded me of the importance of being an organ donor.  Somewhere, someone is praying for you to check that little box on the driver's license application.  Will you be a hero?

Disclaimer:  I'm a Book Looks Blogger.  I receive complimentary books in exchange for an honest review.  All opinions are my own.

Sunday, May 4, 2014


Guys, you know I talk a big talk about Choosing Joy.  And I do try.  Try.  

But today was rough.  

I kinda had a feeling that I was teetering on the edge of stability when I sobbed through "Our God" on the radio on the way to church.  But all it took was a totally innocent comment in Sunday School about how children are a gift and we never know how much time we will have with them for me to completely lose it.  I had to make a quick exit before they saw my Ugly Cry.  

These sorts of emotional meltdowns are usually unannounced.  One day, I can nonchalantly sing along to a song on the radio, and the next day I flood the driver's side.  

I don't expect people who are not in this situation to understand.  But our reality is that the VEPTR is a last resort.  Without this surgery series, we will most likely lose Abby.  But the surgery series has risks and complications in itself, and Abby's respiratory status isn't as great as the surgeons would like for it to be.  It's a scary situation, to say the least.

I'm emotionally exhausted.  All I can say is thanks for praying.  We need them tonight and often over the next three months.  

Sleep Study

Pictures from the sleep study!

Abby was really great about getting everything set up so she could "sleep," and she didn't fuss at all over all of the stuff on her.

In fact, she even wanted to take pictures with my phone!

The last step in the long set-up process was putting in a nasal cannula to measure CO2 levels as she slept.  Abby absolutely HATED this!  After Abby tore it off several times, I had to hold Abby down while the tech taped it to her face.  She was so mad at me!

She eventually cried herself to sleep settled down and fell asleep.  She snored all night and coughed quite a bit.  I don't really know if the snoring is normal for her, because we all sleep with air purifiers that drown out that noise.  But we'll see what they say.  

Friday, May 2, 2014

Friday Funny

Where's Chloe?

This silly dog has some crazy sleeping positions.  She especially loves to hide her head behind this chair or sleep on our shoes.  Crazy girl!