Tuesday, September 17, 2013

Settling In

Just a fair warning, this post could be a fairly long one.
So after a lovely wedding weekend celebrating my sister Katie and her husband Andrew, we packed up the rest of our things on Sunday afternoon and pushed off for St. Louis on Monday, September 9th.  Naturally September 9th and 10th were two of the five hottest days all summer in St. Louis.
While Eileen and I headed off to Barnes for another round of testing and doctors visits, her parents, brother and sister-in-law directed the movers, helped with unpacking and kept Eamon and Adah busy.  Thankfully our apartment complex decided to leave the pool open for a bit past Labor Day given the heat wave and our kids made use of it at least once and sometimes twice a day.

Adah takes a few licks on the air guitar.
Then takes the requisite bow. 
Grins to the left, grins to the right.
The tests at Barnes weren't really that different from the ones in June - no better and no worse.  We had some meet and greets and education sessions with a post-transplant nurse, transplant surgeon and another transplant pulmonologist.  While the surgeon qualified immediate outcome data with a lot of the factors going in my favor (age, diagnosis, relative health, etc.), the pulmonologist really hit hard with the risks of the procedure both short and long term. 
Obviously our decision has been very deliberate, well-discerned and spiritually-guided, so it would have taken a whole lot to give us any second thoughts.  (Not to mention we had just packed up a four bedroom house, shoehorned it into a two bedroom apartment and brought along a two and four year-old just for fun).  "Yes, Doc, we know what we are getting ourselves into and we are not turning back."
Because my milk and lactose allergy presents all kinds of pharmaceutical complexities, I made some extra visits to the pre-op anesthesia department and the local pharmacy to ensure we are all on the same page for before, during and after the transplant.  The team at Barnes has gone above and beyond in this regard, and I have about as much confidence as one can under the unpredictable circumstances. 
"But Mom said she wanted a ciabatta, not a boule, Eamon."
With the help of some dear friends we have the apartment fairly well moved into, made an all-day shopping trip for odds and ends on Saturday while Eamon and Adah were occupied with far more exciting things like the park, the pool and the trampoline.  On Saturday night we took the Metrolink down to see the Cardinals play the Seattle Mariners in a 4-1 losing effort.  (I may have cheered on the outside for the Cardinals, but on the inside I was behind the Mariners/Reds all the way). 

A beautiful night for baseball; unless you were a Cards fan.
Sunday and Monday were pretty lousy days for us. Eileen and Adah came down with some sort of nasty stomach bug that had us scrambling to find a local pediatrician and has kept Adah from her first days of school so far. Today has gone better for her with more food tolerance and even a trip to the zoo, too. So off to SMOS it will be on Wednesday.

Adah and Eamon patiently wait by the Zoo's tank labeled "Nessie."
Maybe Sir Curt Godfrey of the Nessie Alliance got there first and cast
a protective spell to ensure a peaceful existence with our underwater ally.


In the meantime, I was officially listed for lung transplant as of Tuesday afternoon which comes with mixed feelings and emotions.  I also came down with some chest congestion necessitating another visit to the medical center this afternoon.  I'm on an antibiotic and they are running some tests in the lab to see if any thing is growing in there.
On the one hand being only three or four blocks from the medical centers makes these visits a real cinch.  (A healthier version of me would walk or bike, but I've driven or been dropped off).  If, heaven forbid, I'd have another episode of respiratory failure, we're not sure if it would be quicker to call the life squad or for Eileen to dump me in the kids wagon and RUN!  (I'm kidding - mostly).

The view of Barnes Jewish from our apartment parking lot.
But on the other hand our proximity to Barnes makes us acutely aware of the frequent aircare helicopters as we watch and certainly hear them make their approach to the trauma center.  With each inbound flight one can't help but wonder what has happened, who is the victim, what is their condition, will they make it... could it be?


  1. Remembering these experiences very well as I read yours- especially as the 15th was Joe's "liverversary." Please know I hold you and your whole family in special prayer. See you Saturday. Much love-Kristin

  2. Sending prayers and love - You have me missing STL and Ted Drewes! Looking forward to seeing you all on Saturday! Safe travels - XO - Joy