Monday, December 6, 2010

Monday Morning Quarterback

Important things first...Keegan got to meet some of the Dallas Cowboys (again) this morning.  Each year, some of the team members come by the hospital at Christmas.  Two years ago, Keegan got to meet a few of the players while he was inpatient, and this morning, he was able to go see them again.  He was not in a great mood this all.  He didn't feel great, and it was quite a large crowd.  By the time we got back upstairs, he was completely wiped.  Still, we (correction, Gray) was glad to have the opportunity to meet everyone.

Chattin' with Miles Austin and Tony Romo

Everyone smiling but Keegan!  Right after this picture was taken, Gray asked Keegan to say "Touchdown!"  He threw his arms up in the air and yelled "TOUCHDOW" (no N).  Let me just say, he brought the house down!  The entire auditorium erupted in laughter, and Tony said it totally made his day.  Pretty neat.
Roy Williams started the line of players and cheerleaders.

Demarcus Ware was one of three players there that we had a picture of from two years ago (including Miles Austin and Marion Barber; Jay Ratliff and Jason Whitten weren't there today).  Demarcus & Miles were so excited to see how much Keegan had grown.

Hi-fives for Kevin Ogletree

Playing peek-a-boo wth Rowdy

Showing Marcus Spears his "touchdown"

With Anthony Spencer, Igor Olshansky, and Sean Lissemore

Marion Barber signed the picture of him and Keegan from two years ago.

Getting shy around Leonard Davis

Much happier to be back in the comfort of his own bed.  He played with the ball and pencil for a good 30 minutes before crashing for a nap.

Now, on to the medical news....have I ever mentioned how I hate Mondays, especially on a new floor?  No where on earth does a bigger communication nightmare occur than Monday morning on a new floor of a teaching hospital with a complex kid followed by 5 different specialties.  I was about to pull my hair out by 4:30pm, but I think we ended the day all on the same page.  A few balls were dropped today.  We may not be back to the juggling act yet, but at least all the balls were chased down and picked back up by day end!  Here's the scoop for the rest of the week:
  • Keegan will go back to surgery tomorrow to have his dialysis catheter removed!!  (Well, that's assuming he doesn't get bumped off the schedule.)  His kidneys are responding to medications now, so we are fairly confident he won't need dialysis in the immediate future.  It is too much of an infection risk to leave in right now, so out it comes!  While he's in surgery (his 31st procedure requiring general anesthesia in 3 years), they will replace his current central line with a port.  The port is what he had from 2008-2009; it is permanent IV access that can be accessed with a needle.  When it's not being used, it lies completely under the skin, so it is not a constant infection-risk.  This couldn't come at a better time because his current catheter is bleeding consistently, as the incision was stretched out enormously from his swelling.
  • We still have not found Keegan's "happy place" on the kidney medications.  We were chasing our tails on that one through this afternoon.  If we hold them, he stops urinating; then, he would swell back up before the doctor would order more medications to bring it back down.  His weight ballooned almost 2.5 pounds back and forth in the last 36 hours alone (at the peak of kidney failure, he was carrying over 8 pounds of fluid on his little frame - or a full quarter of his weight).  However, we are starting to find a schedule for these medications that will hopefully keep things progressing in the right direction, AND this evening, he was only 1/2 pound over his "dry" weight from the week before all this happened!!
  • His body has stopped breaking down his red blood cells and platelets, and he was started on a medication to help him start building it back up.
  • Keegan is still struggling with his old GI issues, and we are slowly building his tube feeds back up.  While we're going up on tube feeds, he still needs the support and nutrition from the TPN.  We are hoping he will be at full tube feeds by the weekend or beginning of next week, have improving stools, and be able to come off TPN.  If it looks like the recovery from a GI standpoint will take longer than that, he can go home on TPN, like he has before, but we are hoping that a few extra days here will keep us from having to do that.  The goal is to let his intestines "heal" on the tube feeds before we add oral food back in.  That is much easier to do in the controlled environment of the hospital than at home where he is surrounded by food.
  • We are hoping to move back "home" to the cardiac floor tomorrow after surgery or within the next day!  The nurses have been just lovely here on renal, but Keegan loves his girlfriends upstairs!
  • Keegan was scheduled for his quarterly day-long transplant clinic a week from today.  So instead, we are going to knock out all that testing sometime this week and are praying for his usual two-thumbs up for his beautiful, angel heart.
Since this is already turning into the longest post in history, I'll go ahead and address the "where do we go from here?" aspect of all this.  I apologize if it's boring to some people.  Remember that we use this journal as medical history for Keegan, and we want to be as thorough as possible in that aspect.
  • From a renal standpoint, we are happy that Keegan has "recovered" from this incident.  The discussions last week revolved around how to suppress his immune system if he had been on dialysis for three months and needed a kidney, not making a sufficient enough recovery to go home without it completely.  Several things were working against us: (1) he did not start with two functioning kidneys; (2) he was the first case of HUS the heart transplant program at Children's had ever seen; (3) he was the first transplant HUS case the doctors at this hospital had seen that required dialysis, and (4) the speed at which he went into complete renal failure was alarming.  Once again, Keegan fought hard and surprised all of us.  The likelihood of Keegan's kidney function continuing to deteriorate is now more like a when than an if, but we will just have to monitor him, wait, and watch.  We will run some tests in a few months to get a better idea of what function is remaining.
  • From a blood standpoint, we are hoping that we can support Keegan with medications that have worked for him in the past and that he will continue to recover from his anemia, neutropenia, and thrombocytopenia. 
  • From a heart/immunosuppression standpoint, we are charting new territory.  There are approximately six known and used immunosuppression drugs currently available.  Keegan cannot use 4 of the 6 at all, and the remaining two carry some interesting risks.  The plan is to use a new drug that was not even available when Keegan was transplanted.  It is an IV infusion that we will give him every 28 days.  The plan for now is to "day admit" him for this infusion, monitoring, labs, and his monthly breathing treatment at the same time.  This drug was not intended for long-term use, however, so our hope is that he will tolerate the last remaining oral drug also.  We won't start that transition for at least four to five months down the road though.  That oral drug is not generally used as frontline suppression for heart transplants, but we will do what we have to do with what is available to protect Keegan's heart.
Well, I think that is information overload for now!  My head is spinning, so I'm sure yours is too.  Goodnight, and hopefully, we'll be updating tomorrow as Keegan goes into surgery.  I doubt I need to say it, but your prayers would be greatly appreciated for Keegan's safety and recovery tomorrow. 


Grandpa said...

Maddie, I believe we are witnessing two miracles here: The first of course is Keegan, himself and the amazing course of events and his treatments and successes! The second is your incredible ability to decipher and make sense of all of this medical jargon so neophytes in this area (like me) can undertand it. Your amazing endurance and stick-toitiveness and courage through this trauma continues to leave all of your friends and family amazed. We are thrilled to have you as a granddaughter. Love, Grandpa

Ben and Abby said...

Hey Maddie - thanks for the good update. I'm just now reading this - on Tuesday night!! I'm SO glad that things have taken a turn for the good and that Keegan is making strides. That's wonderful! Hang in there!!