Monday, June 13, 2011

Here we go again

Keegan was, as we said earlier, admitted back to the hospital yesterday morning.  He struggled through Audrey's party and really declined quickly overnight.  He maintained a 103+ degree fever throughout the night and started retching and throwing up in the middle of the night.  Evidently, his body was trying to focus blood flow on more critical organs.  So his stomach couldn't tolerate anything in it, and his torso and head would be burning up while his hands and feet were cold.  By 5am, his temperature hit 104 degrees and back to the ER we went.  This weekend's fever was absolutely the hardest one on his little body.   Keegan felt so terrible.  It just broke our hearts, especially when he would start mumbling, "I'm sorry, Mama."

The fever finally broke by late last night.  We were already planning on coming in later this week for the steroid pulse, but since we are here already, things are kicking into hyperdrive.  Here's the plan for this week:

  • Today, Keegan had another infusion of albumin and IV lasix to try to pull off the extra 3 pounds he is carrying of fluid right now.
  • Tomorrow, he will have another colonoscopy done to get new intestinal biopsies.  Since the last scope was almost 2 months ago, we need to have a good idea of where we stand before the steroid pulse starts.  And who knows?  We might find something that gives us an idea of where these fevers are coming from.  Everyone has been quite quick to blame them on inflammation from his GI problems.  Maybe we will have a clearer picture after repeating the scopes and biopsies tomorrow.
  • Unfortunately, that means Keegan has to be "cleaned out" tonight.  Oh so fun.  Even though he has not had any feeds since early Sunday morning, you can bet the onslaught will be bad tonight.  The worst part is the high volume of solution that has to be pumped through him usually causes him to start throwing up at some point.  Yippee...
  • We are anticipating a neuropsychology consult sometime this week to get a good read on where Keegan stands cognitively and developmentally.  That way, we have a baseline with which to compare him months down the road if he develops more brain bleeds.
  • No matter what the scopes say, we will start the steroid pulse Wednesday or Thursday.  He will stay inpatient for at least 48 hours after it starts for monitoring.  We are most concerned that his bone marrow will have difficulty with the weight of the steroids.  Between the scopes, his anemia, and a few big labs that need to be drawn, it is conceivable that we may have to support him with another transfusion sometime this week.
  • As you can tell this puts us dangerously close to being inpatient or going home at his usual fever time.  The team is working on getting him set up through home health for IV tylenol at home, so that we can better support him there through another fever cycle.
  • The team wants to repeat an echocardiogram sometime within the next two weeks.  We will just have to see where we are when they want to do it.  Between his "stiff heart" (increased diastolic pressures) and the donor-specific antibodies, we are going to be watching his heart very, very closely from here on out.

Whew.  Another long and busy week in the hospital.  At least today he has started to perk back up.  This weekend was very difficult to for us to watch as he struggled so much.  Looking back, it kills me to see how sick he has gotten in the last six months.  I've said it before, but there are just so many aspects of Keegan's picture that are changing.  And I'm not sure I'm ready for that.  When Audrey was born, Keegan was having a good year.  I had high hopes that we would enjoy good times with our little family for a long time.  I'm certainly grateful for the memories that we have made and am looking forward to many more.  I just fear those are going to be fewer and farther between as we go forward.  I wish I had a crystal ball that could predict for me just how this was all going to go.  How bad it might get or how or when it might all be over.  Since I don't, I'm trying my hardest to make the most of every day - no matter where we happen to be.  We are exhausted and putting on our best faces seems to get harder each morning.  But we are trying...and we're so grateful for your prayers and support through it all.  The Lord has formed this path for us.  Thank you for lifting us up as we walk it.

I will lead the blind by ways they have not known,
along unfamiliar paths I will guide them.
I will turn the darkness into light before them,
and make the rough places smooth.
These are the things I will do.
I will not forsake them.
Isaiah 42:15-16

1 comment:

Stacie said...

Praying. And loving the scripture you chose at the bottom of this post.

Much love,
Stacie Smith