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Boston weekend

10 Oct Boston weekend

Posted at 02:51h in Uncategorized by
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I apologize for being a bad blogger as of late.  The hotel wi-fi is horrendously slow, so uploading the important things, i.e. pictures, takes forever and a day.  We have no blood pressure or heart rate monitors or daily labs to know how Keegan is doing outpatient.  He is acting much the same as he has for the last week and a half, just out of the hospital instead of inside it.  Although this morning, he had about two hours of a generally good mood.  Gray and I commented several times how amenable Keegan was being.  Alas, it was short lived.  Stinkin’ steroids.

He continues to eat about the same as he was while inpatient, mainly baby food purees and dry carbs with three small boluses of a new formula each day.  I can only imagine what waitresses must think when we say, “no, we don’t need to order him anything”, and then proceed to pull out the baby food and goldfish arsenal.  The nutritionist would like to see Keegan take more tube feedings during the day, but cardiology has placed him on fluid restrictions in our effort to help his blood pressure and fluid load.  Despite that, he has maintained his weight well.  We are on a flexible diuretic plan, which means we weigh him every day (yes, the team gifted us with a brand new digital scale for our hotel room) and adjust his diuretics whether he is up or down.  We are not worried about his intake right now.  Whatever he eats or wants is fine, but we are anxious to restart feeding therapy while we have steroids on board.  It should be interesting to see if his weight remains stable after the steroids are gone.

We have one more day outpatient to run through some more sights, arrange travel plans, and pack/ship items back home.  Tuesday will be a full day of outpatient appointments with the team here in Boston, and if all looks well, we should be able to fly home Wednesday!!  Just 6 weeks after we arrived.  Fingers crossed!  Our two goals before returning home were to get Keegan eating by mouth (and tolerating it…details, details) and to get Keegan’s new team of doctors set in Dallas.  First one seems to be ok, and the second is in the works.  It will be even harder to leave Boston this time than in 2009.

And for the finale, our weekend in pictures:

Saturday we went apple picking in Ipswich, Massachusetts at Russell Orchards

I’ve never done anything like this.  I can’t say I was surprised, but these apples were fresh, crisp, and shiny.  Thanks to being a pesticide-free farm, we could put what we could fit into a bag and eat what we wanted right off the tree!  We plan on taking our bag back to the hospital’s community housing, the Yawkey Family Inn, where Gray and I had a room so one of us could get rest at night.

Raspberry fields

Cider donut time!

The orchard was about a mile from Crane Beach.  Keegan had never seen the ocean, and it was 80 degrees.  Perfect day for your first trip to the beach!

On the way back in, we drove through Salem and ate dinner.  It was the annual haunted happenings fair, so there were plentiful people dressed as zombies/witches/etc around.  So odd.

Sunday, we ventured into Cambridge and toured Harvard.

On the steps of the library at Harvard.
He looks smarter already!

Then we cruised by the Boston Navy Yard to catch a glimpse of the USS Constitution. 

Sunset on the harbor.
We capped off the day with dinner in the Italian North End. 
Overall, a weekend in Boston that was hard to beat!