"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Friday, November 18, 2016

"Devastating news?" or "Happy accident?" ... Well, that depends on how you look at it.

I apologize that it took so long to update tonight after the episode Rowan had today in the ICU, but I am certain you all understand where my focus was.  Rowan was in a lot of pain, complaining of his back hurting all morning.  During occupational therapy and speech therapy, we just repositioned him a few times, thinking that was all that was wrong.  Shortly after those sessions, he wanted to take his nap, but could not get comfortable.  The nurse and I tried getting a look at his back, since that was his chief complaint.  When we touched it anywhere near his recent LP site, he went through the roof.  She tried and then I tried, and all of the sudden he said, "Mom, I can't see you!" and his next blood pressure read was 50s/30s (and he was already on a norepinephrine drip). We thought it was a fluke, but when we started cycling his cuff every 5 minutes, it became evident that something was wrong.  Thank God for a fast acting ICU staff, because Rowan was take off of the CRRT dialysis circuit and taken down emergently to CT, within the hour.  They did a CT scan of his abdomen and spine, and I think we all believed that they would find a leak, abscess or bleed of some sort that occurred as a result of the lumbar puncture he had done earlier this week.  Boy, were we wrong...

God works in mysterious ways.  I know that sounds almost cliché to some people.  But He truly does, and today was just a little more proof of that.  The CT scan did not show any reason for his back pain.  There was no evidence of a problem that may have occurred at his LP site.  There was no clinical evidence to explain what he was experiencing at that site at all. 

There were findings. 
Three specific ones in fact. 
Just not the ones any of us had on our radar. 

This evening, after much review, discussion and consulting, between the ICU, BMT, Infectious Disease, Nephrology, Hematology, and Radiology teams, we were given the following news...

1. Rowan has a blood clot in his right femoral artery.  (This is the site of his dialysis/Mahurker line that he just had pulled a few days ago, the one that was causing him so much pain.)

2. Rowan's lungs are hazy and full of multiple nodules, including one very large one in the left lower lobe. (It is unclear if this could be a sign of a bacterial infection or a fungal infection.)

3. Both of Rowan's kidneys show significant signs of renal cortical necrosis. (This most likely means that his kidneys will not recover, that he will remain on permanent dialysis, unless he becomes a candidate for kidney transplant, somewhere down the road, post bmt.)

Talk about a gut punch.  The wind was definitely knocked out of us all.  How did we go to CT expecting to find one answer for one specific symptom, but come back with not one, but three separate, three different complications...three!

There is so much to consider, swallow, grasp, and tackle.  It will take us a few days to completely understand where we stand with regards to all three issues.  The labs have been ramped up, the teams have grown, and as I type, the imaging and other tests are being ordered.  A lot remains unclear.  Rowan remains on IV pressors, in pain, with vitals that are still unstable. 

We have so many questions...but so do the doctors.

However, when I leaned in and whispered into Rowan's ear tonight, I told him: "You are the toughest kid I know.  I know this doesn't seem fair. But you got this! God is with you very step of the way.  I can't wait until there are no more surprises, no more complications, no more hurdles to jump.  Rowan...I am so sorry!" He of course, humbled me even further...he without hesitation, told me: "It's okay...I can get through it."

I know he can.  I believe he can.  I trust he can.  I have hope he can.

That does not make the news easy.  That has not kept the tears from falling. 

But, that helps us keep going.  It helps us put one foot in front of the other.

I am choosing to "look for the good" as Rowan has instructed me to do.  I am choosing to acknowledge the fact that, had Rowan not had this strange, sudden, severe, unexplained back pain today...we would have not discovered all three of these serious medical complications as quickly, and certainly never all at once. 

Thank you God for revealing the problems.

  Thank you in advance for providing the solutions.

We are believing that this is an example of your divine providence, defined as "timely preparation for future eventualities".

In the simplest of terms, we are choosing to see this as a "happy accident".


  1. You are a God of mercy, Father God, please give Rowan an extra dose of your amazing mercy today by allowing all these conditions to be healed quickly. Thank you for bringing this to their attention when you did. Also, Father, give your daughter, Carrie, a strength and peace that she cannot explain. In the precious name of Jesus I pray. Amen.

  2. Happy they found the findings but aren't the doctors checking daily routine on all this? I don't understand why precious Rowan has to go through so much pain. He is a great warrior as praying last night I cried knowing all the pain he goes through and saying I complain of my daily pain of fibromyalgia and speaking to god my pain is nothing compare to Rowan a warrior but I would take his place anytime as so many of us would do especially his parents. Praying everyday all day