Life as a Leach

This is my new shirt and it has never been more true.  The last few days have been filled with phone calls, paper work, scanning documents, and faxes.  We have prayed about our decision, talked to Abby's pulmonologist, weighed the options, and cried.  There's no great answer, and our pulmonologist recognized that.  She was quick to acknowledge that we have had to make hard decisions for Abby before and we have always made the right one.  She did echo a lot of our concerns and validated our feelings on the options, which helped us to make a decision. 1.  We are going to meet with Dr. Lenke at Columbia University Hospital in New York City.  There was a 14 page application (yes, I said application ) and I had to request all of Abby's medical history related to her spine, as well as her most recent CTs, MRIs, and Xrays be sent to them.  Once all of that is received and reviewed by Dr. Lenke's team, they will decide whether or not they will accept...

Oh CHOP... We have had an ongoing disagreement with CHOP orthopedics over which pulmonologist we should see.  We adore our pulm at Hopkins.  She has been with Abby since the beginning and really gets the whole picture.  She truly cares about Abby and we feel like she always has her best interests in mind.  CHOP ortho really only seems to value the opinion of their own pulmonologist with the Center for Thoracic Insufficiency team.  We have nothing against him!  He is a very nice guy and very knowledgeable, but we see no need to switch pulmonologists when ours is wonderful and 2 hours closer.  We don't care for the attitude of superiority we sometimes feel at CHOP and feel like all of her doctors should work together to give her the best care possible, no matter where they work! (Not to mention, Hopkins is not a two bit hospital!!) With Abby's recent lung decline and us feeling that a surgical intervention is needed, Abby's pulm has been communicatin...

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...

We saw Dr. Campbell this morning.  He took one look at Abby and said, "Well, we've gotta get that VEPTR back in!"  We wholeheartedly agreed!  When we asked about the opposing opinion we had before, he noted that in this case, being old equals having more experience in these situations.  He will talk to the other surgeon to let him know the plan. So what is the plan?  Well first, we have to get this wound healed up.  Nothing surgical can be done until it's closed.  When it is closed, we can schedule surgery.  The good news is that the wound shrunk a centimeter in both length and width in the last week!!!!  This is fantastic news!   The kyphosis still needs to be dealt with, but the ribs (well, the lungs) are the primary concern right now.  We may still go to Boston for the kyphosis, but we are going to take care of this first.   He also LOVED her shirt and took a picture of her to use in a slide for a presentation he is doing fo...