Monday, August 5, 2013

Alec almost ready to be released

Hello Friends:

Alec continues to make good recovery progress.  All of his chest tubes are out, and we have him up walking a bit each day, and playing in the playroom.  We think that we'll be released fairly soon -- probably in a day or two.  Medical teams make these decisions, and they're just waiting for a bit more progress to give their blessing for us to go home.  Alec continues to be up and down emotionally during the day.  He has lots of happy periods punctuated by sad period with tears.  He's become a bit afraid of medical procedures, so even something like removing a band-aid is met with great fear and feelings of betrayal.  He's pretty much a textbook case for this kind of surgery and recovery, and we're very thankful for how well he's doing.  We learned how to do CPR on a child today (it's not gentle either!), and we received instructions for how to care for him once we get home.  Once home, we have a 4-6 week period during which we can't take him places (school, church, out clubbing, etc.), and any family members who do venture beyond the home (to school or work) have to change clothes, and wash up immediately upon entering the house.  Staying home, not swimming, and so on will be hard for Alec.  They told us not to put any over-the-counter preparations on his incision line... that most of those actually inhibit healing.  Who knew!  But, despite all of these initial restrictions, this was a really successful surgery, and should drastically improve his quality of life and the length of his life.

Thanks for reading...

Matt & Joan Vos

Thursday, August 1, 2013

Alec's surgery, the morning after

Alec has come out of both surgeries quite beautifully.  Yesterday's surgery was open heart where they performed a fontan procedure which basically involves adding routes (using artificial materials) for blood to flow.  This should improve his oxygen levels significantly, and he should be able to do things (walking, running, etc.) more like other kids his age.  You wouldn't know it to see him, but his oxygen levels have been dangerously low for all of his life, and this operation should allow him to live a more normal lifespan.  The surgeon who performed his operation continues to tell us that he's getting a A+ rating for how well he's doing, and he's ahead of schedule in terms of recovery.  So, we're considerably more at ease about things.  Alec is talking and seems to be conscious of what is going on around him.  I've been reading him selections from an intro sociology text (just to keep his spirits up!).  During Tuesdays surgery (a catheter surgery) they found a big clump (not the correct technical term) of collateral blood vessels that they think may hold the key to understanding why he had been able to live with such subpar heart performance all these years.  They were able to deal with this during the cath surgery, and it set him up nicely for yesterday's surgery, which went beautifully.  We're staying in the Ronald McDonald house about a half mile away.  It is very nice (and almost free!), and they provide home cooked meals each evening.  The sociologist in me finds the incredibly eclectic mix of people from different social classes, religious affiliations, races, language groups, and so on, to be fascinating.  It's a sociologists playground here.  We saw an Amish family here with their son who has cystic fibrosis, and thought how strange it must be for them -- people who largely excise most modern technology from their lives coming to the Mecca of medical technology to treat their son.

Through all of this were very conscious of how significant and life changing all of this is for Alec.  Les than one year ago he was in very poor and humble circumstances, and not expected to live a long life.  Things are considerably more hopeful for him now, and we so clearly se the hand of God in all this.  Thanks, friends, for your interest and support as we walk through this with Alec.  We appreciate it and continue to covet your prayers.  Matt & Joan Vos