Friday, February 14, 2014

The Next Chapter

We are home from our visit at CHOP.  I'm going to apologize in advance if this isn't my usual style of post.  I'm exhausted, both mentally and physically!

Abby ended up having five appointments/tests done:  CT scan, Pulmonary Functioning Test, X-ray, and appointments with the pulmonologist and orthopedic surgeon.  We managed to get to our appointments on time on Thursday.  After debating whether to call a cab, drive, or even walk, we decided to see if we could drive in.  It ended up being fine.

After the CT and PFT, we saw Dr. M, the pulmonologist.  He went over the results and shared his thoughts, but deferred to Dr. C, who would be the one doing the surgery.  So we really had to wait until Friday to get the answers we wanted.

We saw Dr C this morning, who went over the CT and PFT, but then asked why we didn't get an xray.  (We were told during the scheduling process than an xray wasn't necessary...)  So, back to radiology we went!  When the xray was done, we went back to ortho to see Dr. C again.

After gathering lots of information, we have learned that Abby's scoliosis is progressing and has significantly worsened in the last 6 months.  She now has a 28 degree curve (scoliosis) and a 59 degree hump (kyphosis).  Because of this and the narrowness of her chest, her lungs aren't growing the way they should be.  The capacity is only about 1/4 of what it should be in the right lung, and about 1/2 of what it should be in the left lung.  She appears to have about 40% of lung function.  While this hasn't affected her everyday activities too much yet, it is a matter of time.  We are already seeing it in her resting respiratory rate, which is about double of what it should be.

It appears that we have received the "big sign" we were praying for to help us decide about the surgery.  We will be tentatively scheduling surgery for this summer, while closely monitoring her scoliosis and lung functioning.  They want to see her again in 4-6 weeks for a dynamic MRI, as well as repeat scans, xrays, and some blood work.  We will also meet with both Dr. C and Dr. M, as well as a few more on the team.  When all of that data is collected and the staff has discussed her case, we will meet again to make an official decision.  But it is highly likely that she will be having surgery this summer--or earlier, if the lung functioning continues to decrease.

We obviously weren't expecting the lung capacity and functioning issues, so that definitely threw us for a loop.  It's been a very long, emotional day.  But we will continue to rest in the assurance that God has a plan for Abby's life, and this is just the next chapter.  Thank you for praying for us during this journey!

Who's Your Hero?


Mine wears a rainbow tutu!





1 comment:

Raelyn said...

Julie....
Oh dear, I am behind on this Blog!! Well, I shall just have to do something about that!! ;)
"We will continue to rest in the assurance that God has a plan for Abby's life, and this is just the next chapter.". Mmmm.... Amen to that!! ;-D
Hugs, prayers, and take care, Friend!! ;)
--Raelyn