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!

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