Sunday, March 27, 2011

Home

Technically, we've been home since last Wednesday evening, so I suppose this update is about four days overdue.  Trying to adjust our schedules and keep up with Keegan's medical issues has kept us pretty busy since we arrived home. 

Keegan is doing okay.  Could definitely be better, but I know it could be worse.  I know one day he'll die of humiliation from me talking about this, but it's the truth.  His diarrhea is becoming even more of the clear mucous that we saw a week ago and more frequent.  He has an appointment with his GI doctor tomorrow, and I'm 99% sure that at least the c-diff will come back positive tomorrow, if not the rota too.  (If you have to ask how I know that, your child has never had c-diff.  Consider yourself lucky.)  Keegan is still getting only 10cc/hour of half-strength elecare through his g-tube, approximately 8 ounces per day, and he gets 16 hours of TPN and lipids per day.  He is only taking water by mouth during the day.  Until about 2pm everyday, this is what he deals with:


Formula in the pack on his back.  TPN and lipids in the rolling backpack (aka "monkey").

Keegan is getting pretty good at keeping "monkey" with him at all times.  Probably has a little to do with me yelling, "take monkey with you!!" about 1500 times per day.  Today was much better than Thursday, but he still forgets it too often.  If you're not paying attention, you'll find him stretched to the limit of the curly tubing and paralyzed by how tight he's gotten himself wound up.  Remember that line goes directly to a needle in his chest.  Not exactly comfortable.  He is a resilient, strong, smart little guy though, and each day, he has figured out ways to do what he wants despite the limitations.

I wish I had the energy and clarity of mind to fully express everything that I'm dealing with and feeling lately.  Frankly, I just haven't come to grips enough with it to put it in writing and out for the world to see.  I'm tired...physically, mentally, emotionally.  I'm angry, disappointed, and full of grief.  I want Keegan to get a break.  Heck, I want a break.  I can only imagine how he would feel if he knew the extent of all he is dealing with on a daily basis.  Yet, that one thing, above all else, helps me move forward each day.  The fact that Keegan has no idea what he is missing.  He has no idea he isn't perfectly normal.  He knows that he is home, surrounded with the love of his parents and sister, and that for now, he has a few extra pumps to carry.  But he's not going to let it get in the way of his fun.  My son is amazing.  Stronger than I could ever hope to be.

I have a lot to catch up on here.  Audrey had her 9 month doctor's appointment.  Alex has an exciting opportunity for us to help raise awareness and money for congenital heart defect research.  Keegan has more appointments and therapy this week.  We are getting in a groove here, and I will try to be better about updating this blog. 

This life is a marathon, not a sprint.  We might be hitting a wall, but we'll keep running.  And we appreciate your continued support and prayers that we can keep going day in and day out.  Thank you so much.

"Let us run with perseverance the race marked out for us,
fixing our eyes on Jesus, the pioneer and perfecter of faith.
For the joy set before Him, He endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  Consider Him who endured such opposition from sinners, so that you will not grow weary and lose heart."
Hebrews 12: 1-3

2 comments:

Julie said...

His rolling case gives new meaning to "the monkey on your back" phrase.
So glad you are home, wish things were going better for you. It's great to hear that Keegan, figures out how to get done what he wants. His is a strong and determine guy. You are in my prayers.

Cheering from the sidelines.

Kristine said...

That is one cute back pack. Glad they got him something fun like that. I just stumbled upon your blog today and will be praying for you and K. Heart hugs!!