Sunday, November 28, 2010

And we're back... Children's Medical Center that is.  In the PICU to be precise.  And headed to the OR this afternoon. 

I updated last that in the days leading up to Thanksgiving, Keegan's GI problems were getting worse.  Friday morning, Keegan woke up with a completely dry diaper and looking quite puffy.  He had no energy, hardly urinated at all during the day, and didn't want to eat.  The dry diaper is significant in that we generally have to change him at least twice overnight to prevent him from having an accident.  We are constantly on alert for changes in urination and edema (swelling) because (1) his transplant medications can cause kidney problems and (2) he only has one functioning kidney anyway.  We watched him closely Friday, trying not to freak out.  We started him on the antibiotic for his GI symptoms that he had been put on in Boston.  Saturday morning, he again woke up completely dry and even more puffy but with more energy.  We notified the transplant team.  They allowed us 4-6 hours to monitor him at home, but we decided a few hours into it that it was best to have him seen.

At 2:30pm, we arrived at the Children's Legacy ER by our house, and things steadily declined from there.  Keegan continued to not produce urine, and his labs were all sorts of crazy.  A chest xray indicated he wasn't in congestive heart failure, but he had a mild fever.  He was begging for water even though he wasn't peeing.  We decided to admit him downtown and were preparing to load him into the ambulance (his 8th ambulance ride so far) when he threw up for the first time.  We got to the cardiac floor downtown around shift change, and things still got worse.  Around 4am after more labs and monitoring, I got the dreaded message from our nurse that "the doctor was on his way to talk" to me. 

Long story short - Keegan is in renal failure caused by hemolytic uremic syndrome or HUS.  This is often seen in people with E.Coli infections, but it can also be caused (low and behold) by Keegan's primary immunosuppressant (transplant medication).  Basically, it is causing kidney failure and destroying red blood cells and platelets.  Keegan will be going into surgery this afternoon for a dialysis catheter and central line.  He is extremely swollen, and we are trying to keep him as comfortable as we can right now.  The important thing is that right now he is stable. 

The plan is to support him through this as best as we can with dialysis and blood/platlet transfusions as necessary, but we're probably looking at a few weeks here.  We caught it early and are hopeful Keegan will make a full recovery from this longterm.  However, we are dealing with the fact that he only has one functioning kidney already, and a hit like this could be very bad.  We are choosing not to think about that at the moment and trust that God has a plan for Keegan.  To tell you the truth, we are living in the moment right now and trying not to lose it.  Audrey adds a whole new dimension to being inpatient and particularly in the ICU, as she is not even allowed on the floor.  Please continue to keep Keegan lifted up in prayer.  We are so thankful for your undying support and love for our family and Bug.  We will update again tonight after surgery.  Thank you.

Have I not commanded you? Be strong and courageous. 
Do not be afraid; do not be discouraged, for the Lord your God is with you wherever you go.
Joshua 1:9


Angie said...

Praying without ceasing sweet and precious friends! We love you so very much and ache with you over this scary time. Please know we are here to walk every step of this journey with you and we will not waver in our faithfulness. In HIM--Angie

Anonymous said...

You're in my thoughts, and I'm lifting Keegan up in prayer. Prayers to the whole family through this tough time.
Trish Phillips

Texas Transplant said...

M+G - I'm thinking about you guys! L

carlisle clan conversation... said...

Praying for sweet Keegan!

Love, Carter Cates' Aunt Jenni

Anonymous said...

Praying for sweet Keegans speedy recovery and for strength, and faith for you and ur family.

Anonymous said...

Since we met at DCH we have never stopped thinking about your family and will be sure to keep including Keegan in our prayers.

Eric, Liz, Hudson & Ian Funk

Dustin & Kate said...

My prayers are with you!
~Kate W.

Sherri said...

Praying for little Keegan, and the rest of the family. Keep looking towards the Father for your strength.