Saturday, June 14, 2014

Twice the Worry

We had a long meeting with the orthopedic surgeon on Friday who will do the VEPTR. I am very, very glad that we met with him.  It was worth the fourth whirlwind trip in five weeks. Bottom line: we can't wait on the VEPTR.  It needs to be done now.  So, our decision is made!

He thinks Abby will benefit most from attaching a permanent curved VEPTR after breaking and grafting the ribs to make them expand. (if it sounds painful, that's because it is!). This needs to be done on both sides, but is too risky to do all at once. She will have the right side done August 6th, then have an identical surgery on the left side 3 months later. This is not the "typical" VEPTR, but he feels it will be our best bet for pulling out her ribs and getting them to grow properly.

These are Abby's ribs now (images taken in February--the disc is a little whacky and I couldn't open the most recent CT.  They look the same though!).  There are 4 solid ribs at the bottom on her right side and 5 solid ribs on her left.  Remember that the image is backwards.  You can also see the scoliosis here.

This is what Abby's VEPTRs will look like.  She will also have one on each side going from the rib to the pelvis to keep her scoliosis and kyphosis under control, so she will have 4 appliances total.  They will be rib to pelvis for added stability.

This is what the rib to pelvis VEPTRS will look like.  
There's also a chance that the ribs she does have aren't strong enough to hold the VEPTR.  He said that xrays have lied to him and he won't really know until he gets in there.  With her rib gaps, she has a good possibility of having flimsy ribs.  If this happens, he will scrap the VEPTR for now, do bone grafts to make the ribs stronger, and wait 3 months before implanting the VEPTR on the right side.  Then she will have to wait 3 more months before getting the left VEPTR.

We've been told that after the first surgery, Abby might have some trouble walking.  The pulling that the VEPTR will do may make her off balance.  Dr. C. thinks that she will walk, but she will have to take some time to figure it out.  If you know me, you know that I will not let Abby get away with not walking!  We will work really hard at it until she figures it out!

Dr. C. is going to speak with our ENT and jaw surgeon at Hopkins to determine exactly what safety measures need to be put in place.  He also mentioned the possible need for a "short term" trach.  All three of the surgeons seem to be pretty off-handed about it...we aren't thrilled, to say the least.  But, I'd rather take a trach than the alternative.  We aren't planning on a trach, but I don't think it will be a surprise either.

This is even more involved than what we were already expecting. It's heartbreaking to have to put her through this big surgery twice. She is also scheduled for her jaw distraction in November, so she would have 3 major surgeries in 4 months.  Matt and I are considering postponing the jaw distraction until next spring, if the doctors are comfortable with waiting.  We have determined that the VEPTR needs to come first and if the reason for doing the jaw surgery first was to make it easier to recover from the VEPTR, then it shouldn't matter if we wait another 6 months.  Doing so many major surgeries in such a short amount of time is a lot on a little body.  I'm planning to call on Monday to see if I can chat with the jaw surgeon.

Please, please pray for Abby. She is such a special little girl. We love her so much and will do anything to keep her with us!!

1 comment:

Dave said...

just a note to say that our family is praying for your family.