Friday, October 4, 2013

Pirate and Princess 5k

Bethany Christian Services hosted a Pirate and Princess 5k and Fun Run on September 21st.  The morning was filled with kids and adults alike dressed up as pirates and princesses.  Face painting, inflatables, and cotton candy were fun activities for the kids as they waited for their parents to cross the finish line.  Students from Covenant volunteered at the race handing out water and attempting to face paint.  (Mustaches were extremely popular.)  Despite the rain, the morning was successful and enjoyable!

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

Wednesday, July 31, 2013

He's done!

Alec is all finished!  The surgeon told us that all had gone well with no surprises.  Well see him in a half hour or so.  Matt & Joan

Out of surgery

We just got a call that Alec's surgery is all finished except the final closing.  Apparently everything went well... We will find out in about 20minutes.
So, here we are.   Interesting night in that Alec began running a fever early in the night.   There was concern that the surgery would be cancelled or postponed until the fever came down.  The night nurse worked on bringing it down, and it did come down low enough for the surgeon to give the thumbs up.    Alec did OK last night and wanted to get up and move around the room a bit (slowly).  However, this morning he was a more upset and scared.  He cried quite a bit while in the holding room until we distracted him with watching TV on the iPad.   Finally, they sedated him because he was just becoming too upset.   

Currently, he is undergoing all of the pre-op stuff.  They will call us from OR when they're about to begin the incision.   And so the long wait begins.

We learned from talking with the surgeon (who by reputation and our opinion, after meeting her, is exceptional at what she does) that Alec had a MASSIVE collateral (essentially a large clump of vessels that pools and redirects blood flow in the lungs) close to the aorta.    The doctor who assisted yesterday's surgeon assisting said she'd never seen such a large collateral.   
Dr. Christian, today's surgeon, came by yesterday to meet us and was surprised to find out that Dr. Ammon (yesterday's surgeon) was still in with Alec.  So, she was able to go in and see up close what Alec's heart looks like (through the heart cath) and was able to see the collateral and then later described it as "God's little miracle" as to how his body compensated and provided a natural shunt where it was needed when he was an infant.   This huge collateral, although not an overly efficient way to get blood to pulmonary artery, preserved his life at a time when he needed surgery but likely didn't have access to the medical care he needed.  She confirmed what I knew all along and that is he never did have the first surgery that our cardiologist in Chattanooga kept telling us he HAD to have had to have survived. .. . .    So, in the end, it had saved him but it did need to be fixed and so we are thankful for God's provision that the collateral was discovered before the open heart today.   

Another teachable moment for me (Joan) in God's provision for Alec and for us.