Monday, September 5, 2011

To Operate or Not?

Today is a good day because:

Our happy boy!
  • Jonathan (15) fixed the kitchen faucet that was dripping, without any help from me.  He just did it!
  • Deborah (19) went to the store and bought the stuff for an oil change.  When she got home, David (17) & Jonathan changed the oil in the car, and it's only had the "maintenance needed" light flashing for two days.  Again, without help (at least so far).
  • Trach change and circuit change happened today without any blood or tears!  It's been several weeks since I cried, and a few weeks since we've seen any bloody secretions or blood around the opening, but this is the first time Aaron hasn't cried at all!  YEA!!
  • We're also about to sit down to a (fairly) nutritious dinner as a family, or at least with everyone who is here.  We miss you, Mary!  Hope you're having fun at BYU.

Last week was such a busy week.  Aaron had appointments with orthopedics at Shriners for his feet, an IFSP (Individual and Family Service Plan) meeting with his Early Intervention team, ear check with his pediatrician, plus two picnics and a family party.  Aaron even made it to a soccer game on Thursday evening.  Big brother, Joseph, played so hard.  The team lost 0-1 on the very last play of the game.   The big news for the week is that the bones in his feet seem to be shifting.  However, that brings us to another dilemma.

Nana, who passed away about
3 weeks ago, collected beanie babies.
Mom brought one for each of the
great-grandkids.  This is Aaron's.

We had not planned to do surgery on his feet.  In fact, his orthopedist recommended against it.  But she's now changed her mind.  He is doing so well, and his feet are doing so well, that they'd like to do a quick surgery.  They have always planned to partially clip the tendon so that it would lengthen as it heals.  However, that alone rarely has good or permanent results.  When a pin is placed in the bone to hold it in place while the tendon heals, the results are almost always permanent.  So that's what she wants to do.  She said it would be possible to do it under local anesthetic, but probably much more traumatic and difficult for Aaron.  Because he is doing so well in every way, she wants to make it easier for him to learn to balance and maybe even walk.  Currently, surgery is scheduled for September 16th.  He would wear casts for another month after that, and then switch to braces that he would wear intermittently.

Playing with his Beanie
Elephant from Nana.
Honestly, if not for little Caleb last week, I'm not sure I'd even think twice about this.  And I know Aaron is not Caleb.  But Caleb has touched my life in so many wonderful ways, and I can't help but be really nervous about this.  This precious angel will be remembered at a Celebration of Life tomorrow and my heart is breaking.  So please, pray that we will know the best course of action for Aaron.  I think we've gathered all the information that we can.  Cardiology has been asked to weigh in on the surgery and it would be done at Primary's with a cardiac anesthesiologist.  His regular admitting team has been alerted and asked to be aware and ready to admit if he needs it, but they feel that it will probably be an out-patient procedure.  See, another benefit of being vent dependent is that we don't have to extubate and be able to breathe on his own.  He just has to be at this baseline vitals and be able to be comfortable.   So please, please pray that we will feel confident of the best course of action for him.
Snuggling with his
"Child of God" lamb from
Prenatal Partners for Life --
Thanks, Mary Kellet

The fun part of the week was Saturday evening.  I WISH I would remember to get the camera out more often.  I even had it with me!  We went to the local SOFT picnic (Support Organization for Trisomy 18, 13 and Related Disorders).  It was so much fun to meet other families.  Most have angels that have gone on ahead, some almost 30 years ago!  But there were two other very special girls:  Ashton, almost 12, full T18 and Arianna, 4, full T13.  I WISH I had gotten a picture of the three of them together.  I can't say how much it meant to me to be with these parents and hear about their experiences.  A wonderful, wonderful time.
Third set of casts -- Race cars!

Love Elephant, Love Aaron

1 comment:

  1. I am praying that you continue to be blessed with inspiration and guidance as you care for your family. I love reading all your updates & wish we were closer to you! I love you!