Exhausted, Frustrated, But Improving

Chest tubes are out as of this morning!  That means a huge reduction in her pain.  I am told that a chest tube feels a lot like a butterknife stuck in your ribs.  She is finally able to play and crawl comfortably again without morphine!  We will need to be here at least one more week while they continue to monitor and treat an infection in her mediastinum, the space outside her esophagus.  (No trip to Oregon yet, boo!)  Still on TPN, no food allowed by stomach. When I need to eat, I leave the room.  The sight and smell is torture for her.  Waiting on a full second opinion from Boston Children's, and we're now to the point where we're strongly considering either a hospital transfer or a trip there for her care in the near future.

The visit from Justin and the kids was sooo great!

As we'd anticipated, surgery did recommend the stent.  Their plan was to place it, monitor it one week later, then remove it after four weeks.  Although Dr Rollins and Barnhart have used this same procedure on four patients successfully over the past three years, and are in the process of publishing a paper about it, we felt like the details of 3-yr-old Brayton's passing were too close to home, the timing of that story coming to us too much of a coincidence.  We declined the procedure.   Doing so may have extended our hospital stay, but from our viewpoint the risks just weren't worth it.  We did learn that BCH does use stents but only uses them for a 3-day period for healing a diverticulum.

 

She was also removed from droplet precaution today (which means she can go on wagon rides again, yay!) and we are scheduled for a chest CT scan to check for abscesses, which they suspect might be present based on yesterday's labs. Thank you for all the support and encouragement. Yesterday was exhausting.  The esophagram showed no real change in the diverticulum, and the surgeons here initially said they want to keep her as an inpatient until it heals over--- but that could be a month, it could be never-- so I think they'll just reevaluate things next Monday when they do their next esophagram.  That news was a blow.  I had really thought we were heading home in the next couple of days, once the chest tubes were out, but our usual surgeon Dr Downey helped us understand how serious the infection is in her throat, which is still being treated with picc line antibiotics.  Part of my heartbreak is that I will miss a special wedding out in Oregon next week that I've been anticipating for months.  

 

Time with our family together definitely cheered her up!

 We also had our first telephone consult with Boston Children's EA department, but their second opinion was incomplete yesterday because they did not have all of her data yet.  Still, our conversation was great and I was truly impressed.  We are carefully considering the logistics, pros and cons of going there while trying to maintain the great relationship we have with our surgeon here.  We greatly value his advice.  Our surgeon loves Audrey and has spent a LOT of time talking with us and doing all he can to help her; he is wonderful and very protective of her.  Essentially, he is not convinced that Boston Children's Esophageal Atresia Program has more to offer there than we have here, so we are working on doing all of our homework with cool heads and asking a lot of questions of both sides.  It is tough.   I am trying to sort out what is fact and what is opinion. Very stressful.  Boston claims to have the premiere treatment center for Esophageal Atresia, and first hand reports from dozens of families seem to corroborate that claim.  I even asked for any negative experiences, and out of dozens of comments the worst it got was that they might tend to be a little on the overoptimistic side.  If we stick with the plan here, our surgeon will continue a course of dilations as needed, but with a gentler method of using balloon dilators to keep her just open enough for saliva to get through.  In a few months or a year, I think he will consider a resection of her esophagus, but that's not on the radar yet.  I am worried that a resection could result in a loss of her esophagus, because I read a study that said that in a patient three years later after a tight repair, the esophagus was still so tight it was "like a guitar string."  I am frustrated to think of the months ahead, constantly denying her food when she is so excited for eating, of her tears and frustration as she chokes and throws up every time she manages to snatch a bite of something she wants.  Our surgeon gently called it a time for tough love.  But it is so heartbreaking.  I look at her and I see a passionate little  Rapunzel from the Disney movie Tangled, singing, "When will my life begin?"

 Two more happy things: she was totally calm for her CT scan a few minutes ago (great news: no abscess!!) because they let her keep her fuzzy pink blanket that she has been sucking on for comfort all week--we have already snuck it away to wash it three times, haha!-- and I got to wear a hot pink sparkly lead jacket--GROOVY--my inner "hot 80s girl" approved. Plus yesterday Justin and I went to go downstairs for lunch and a volunteer was playing the grand piano and let me hop in and sing with her.  THAT felt SO great, and I felt like I was rockin' dat place with my classical soprano shtick.  Eeeeeven if nobody stopped as if to say, "wow she's so good!".... more like, "oh my gosh who is that lady embarrassing herself at the piano, I can't watch!"  Hahahah!