Pieces of the Puzzle

After a wonderful visit from my dear friend Angie and her husband last night, plus a talk with one of our special nurses from NICU days, I should have been all set for a restful night!   You'd think, huh.

Woke up in the night with questions swirling in my mind and jotted them down for later.  Pieces of the puzzle that did not fit, such as...    If they took the chest fluid sample immediately from her cavity right after the chest tube was placed in the OR, it makes no sense that there would be e Coli and other nasty bacteria in it, if it was truly a "contained leak" separated from the chest cavity by a membrane.   The surgeons had blamed the bacteria on the practice of "flushing" the tube which is normal for treating heart patients-- whose blood in the chest cavity coagulates and clogs the tube-- but was not needed for draining Audrey's pleural fluid, so they discontinued that in the first couple of days, which I was glad for since it was painful for her.  But until this morning I hadn't realized the disconnect in the reasoning-- the flushing was not begun until after we left the OR, so the sample for culturing had already been taken.  But then, why would the esophagram show a contained leak if there was a free tear?  I know she was supine, laid out on the table and sedated.  I think about a hard, fibrous scar and the manner in which it would crack.  I wonder if it would be opened and closed by movement.  We should do her next esophagram conscious and sitting up, and "live view" instead of snapshot-style if possible.   (Note: Dr Downey later told me that there is transfer, or travelling of bacteria, between the mediastinum and the pleural space, so we can have a contained leak and still have a bacterial infection around her lungs.) I am in knots over this coming Monday's test.  If the leak is healed, we are on a path to home.  If not.... well, we'll have to see.  She had a kind of rough night, following yesterday's kind of rough afternoon, then another rougher afternoon today-- her pain is increasing and I'm not sure why.  Soreness, hunger, reflux? (Oh my goodness, reflux!  We haven't had reflux meds in a week!  Fixed that.)  Still pain.  So she just had her first morphine dose in days and now she's playing happy as a clam.  They discontinued her Toradol (intravenous ibuprofen) today because there is a limit of how many days they give it before they have concerns about kidneys and liver, so we now have Tylenol instead and I have to ask for it every time, and she always needs it right when it wears off.  It takes SO LONG to get it too!  Like an hour and a half a lot of times.  Poor baby!  When she cries and whimpers I can't think straight.   Awesome nurses tonight and in the morning are planning to get on top of the schedule so she is never without a pain med in her system-- they think it's just the increased movement that is causing her to be sore, chest tubes are supposedly super painful.  Thanks Angie for the awesome dinner last night, made for great leftovers for lunch--got me through the stress today!


Although her pain seems to be increasing, her numbers look good and her chest output has basically stopped-- then at 4am I suddenly had a horrible thought-- what if the chest tubes were clogged??  I got up to help comfort her and help the nurse until we got some pain meds on board, and told the nurse of my worries, and that I wanted to ask for a chest x ray to make sure she wasn't building up pressure again-- turns out it was already ordered for this morning!  Thank heaven!  I knew there was no way I could sleep, so got showered and dressed and then dozed until they were ready to take her down for the chest x ray.  Thankfully it showed continued improvement in lungs and both tube areas.  Other worries were relieved when I posed my questions about the bacteria to the (awesome) Resident, Katie, who basically confirmed my suspicion: yes, Audrey probably did have a free leak at some point (between the contents of her throat and her chest cavity), but it was probably very, very small and has obviously healed over because she is improving.


Spent most of today working out the logistics for my husband and four other kids to come up for a visit this weekend..... whew!  What a production!  The chaplain came to meet me this morning too-- I confess I've been running a bit low the past couple of days, and it was great to talk with her.  I told her the gist of our tale, and summarized my core beliefs, and facetiously asked her for some magic words for dealing my baby's mortality.  She told me that I already have the ideal outlook, beautiful beliefs, and the best attitude she's seen.  Darn it, haha!  We had a lovely prayer together and she left me with the scriptures I'd requested and a promise to stop by again.


Also talked to Boston today. They had not called me back yet and I was getting nervous. Apparently they do their chart reviews on Mondays and are in the OR W-F. I explained what is happening and they are putting our chart on the top of their stack (got the records transferred, check!) and the team will talk to us Monday! Same day as our esophagram. Ohhhh man, I am so nervous, and excited, and nervous, for Monday!


But for now time for a break.  Visits from two sweet friends tonight and then, just before bedtime, my children!!  YAY!!