Sunday, April 10, 2011

News and a picnic

I really, really do promise that one day soon I will have time to sit down and write an update that is in depth and detailed.  After getting the kids down, eating dinner, cleaning up, pulling meds, making formula, mixing TPN and lipids, hooking Keegan up, and doing anything else that needs to be done...well, I just am not as up for a big, long post at 11pm.  Especially when I have to be up in a few hours to take care of Keegan again. 

So, here's the scoop:
  • Keegan had cardiac clinic last Thursday.  His heart looks great and strong, as always.
  • His kidney is stable for now.  We are going to schedule another GFR for the end of June.  This time, the goal will be to keep his function above 50%.
  • We went ahead with the anticipated medication change.  Rapamune and steroids were started yesterday.  Two doses in, and we haven't seen a drastic change yet.  Here's crossing our fingers for more of the same.
  • GI.  Sigh.  This is where things get tricky.  It's bad...really bad.  Gray and I have a conference with Keegan's doctor here on Tuesday.  The gist of the conversation is where to go next.  Keegan needs to see a gastroenterologist that specializes in motility disorders.  The two leaders at this point are Boston and Cinicinnati.  Once we meet with GI on Tuesday, I will go into more detail about our decision, but until then, we would appreciate prayers for wisdom and guidance.  It will be difficult, but we are anticipating and hoping to make this trip in the next 2 weeks.  Audrey's birthday is coming up at the beginning of June.  The sooner we get Keegan where he needs to be, the sooner theoretically we can bring him home.  Ideally, in time for her birthday.  This is a very, very big decision for us.  Again, we would greatly value your prayers for our family as we navigate these waters.
I know some pictures are long overdue.  Today was the annual transplant picnic.  This was the first year all the transplant groups from Children's came together for the picnic (heart, kidney, and liver/intestine), so it was a little different.  Because of how Keegan has been feeling, we almost didn't go.  But we pulled together and ran out at the last minute.  It was different not being with just our heart kiddos, and the turn-out because of the change wasn't quite what it used to be.  Still, it was nice to get out and enjoy the company and weather.



The annual group shot

Miss Melanie (Child Life) helping Keegan have at the pinata!


Audrey and Brynn (15mo, transplanted almost a year ago on Mother's Day)


I plan on a post tomorrow all about little miss Audrey.  She is a firecracker, and she keeps us laughing all day long.  Tuesday is our big decision day, and Wednesday is Keegan' monthly day admittance to the hospital for his infusions, labs, breathing treatment, and needle change.  And of course, don't forget three days of therapy visits.  Whew.  Here we go!

For now, we are soldiering forward, strengthened by your prayers and support for our little Bug.  We pray the Lord will grant us the wisdom, peace, and guidance to make the best decisions for Keegan and our family.  The ground may be uncertain, but our faith is not.  He has Keegan firmly in His hand, and that is all we need.

Indeed, the very hairs on your head are all numbered.
You are worth more than many sparrows.
Luke 12:7

No comments: