Monday, August 22, 2011

Another day

Today marked another day of fever for Keegan.  Last night was not easy on him.  Consistently in the 103s.  After another IV tylenol dose at 6am, he "simmered" at 99-100.5 all day.  At bedtime, he was at 100.8.  This was a marked change from all 10 of the previous fevers.  It has already gone a good 12 hours past all the other fever cycles.  If he spikes again overnight, we will truly be in uncharted territory with three straight nights of very high fevers.  Keegan's baseline normal body temp is about 96.9, so you can add at least a degree or so to any temp he has.  Other than IV tylenol, we have no other way to help him during these cycles at this point.

Today marked another day of line problems.  Since he has been at his maintenance dose of steroids for a week, we attempted to access his port tonight.  The plan was to use the port for a week with good results before pulling the PICC line.  We know that his PICC is on it's last legs.  After last week's dressing change, it became very sluggish.  So Friday night, we ended up in the ER.  After an xray showed the PICC had migrated a few centimeters, we determined that it was probably embedded against the vein wall.  A power flush knocked it loose and allowed us to go home then.  That little incident made us realize we needed to start using the port.  Tonight, I tried twice to get blood return from the port.  Then Keegan ended up in the ER again because it wouldn't budge.  The hem/onc team was able to finally free it up after a lot of work.  We do not have much confidence in this line for now, but we will just have to see how it all pans out.

Today was another day spent trying to arrange for our trip to Boston.  This morning, the plan was to gather information and documentation with the goal of traveling next week.  By this afternoon, the plan shifted to trying to get Keegan there by the end of the week.  Nothing is set yet.  Lots of work done today and hopefully lots more to be done tomorrow.  We are working on securing an inpatient transfer again this time, which would involve admitting him here in Dallas to the hospital and transporting him there to the hospital via medical air transport.  Keegan will be inpatient for an as of yet undetermined amount of time when we arrive.  We have no timeline at this point for how long we will be gone, but we are betting on a month at least.  I am paralyzed by the choice I have to make between my children.  My son desperately needing this requires me leaving my daughter behind.  A choice no parents should have to make.

Today was just another day of the same craziness for Keegan and our family.  For almost everyone else though, today was the first day of school.  I didn't have time to really think about the implications of today until I scanned the 5 million Facebook posts tonight of everyone celebrating the first day of school.  I am only slightly ashamed to admit the bitterness I feel.  We were there just one year ago.  He was there just one year ago.  How could our lives have changed so much?  I knew then that Keegan going to school was risky, that it opened up a world of infection that he hadn't had to deal with before then.  I never, ever, ever could have imagined that after 2 and half months, it would all be over.  That our lives would be so drastically changed.  Kidney failure, dialysis, ICU, intestinal failure, bleeding, early stages of rejection, fevers.  A year ago, I tried to put my fears behind me.  Little by little, I saw them come to reality, all but slapping me in the face and laughing at my audacity over the last year.  Today, my grief is raw.  That small sliver of hope was jerked away so quickly, it almost seems as though it never existed.  A few weeks ago, we were told that Audrey couldn't even have a small dose of normalcy in going to Mother's Day Out because the risks were too great for Keegan.  She might only get to go for a bit this fall while we are gone.  I am ecstatic for her, for every child that experienced that glorious first day for themselves today, and for every child that enjoyed returning to school one more time.  But it doesn't reduce the regret I have for the day that my son did not, and honestly may not ever again, get to enjoy.

But this is our life.  This is the path God has chosen for us.  Another day.  Another step forward in the journey.  We may slow down on days like this, but we have not given up.  Another day survived.  Another day lived.  Another day to praise Him for our blessings and ask for strength for the challenges yet to come.


Stacie said...

I respect your honesty about just how difficult times are. Thank you for being so transparent. This helps me know how best to lift you up to our Lord Jesus. Praying for wisdom for all involved in Keegan's sweet life. And I pray for a peace for you all that surpasses all understanding.

Much love,
Stacie Smith

Kira Willingham said...

I agree with Stacie. Don't for one second feel bad about your irritations of facebook back to school. Maddie, remember how many people are lifting you up. Please also remember that I think you are so very strong. You make decsions NO mother should ever have to make on a daily basis. I bet when Audrey grows up and knows all you went thru for her and Keegan she will want to be as strong and courageous as you are. I want to be... Safe travels and thank you for keeping us updated. I know I and many others pray and think of you all daily.