"Our Little Trooper"

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

Tuesday, October 18, 2016

Day -1 ... (again)

Day -1 (again)

After staying up all night with Rowan in the PICU Sunday night, getting an MRI, a lumbar puncture, Xrays, 2 bags of platelets, and CT scan, we could have slept all day...but there was too much to do in preparation for transplant, and in order to get a hold on his current health complications.  So we locked hands and set out to get it all done...

Brian had labs, a gcsf shot and is peripheral blood stem cell collection all day at SCCA.  Rowan ended up getting his shunt tapped, which led to the decision to emergently take him to the OR for a vp shunt revision.  Then, he and I had to take an ambulance ride (with 2 emts, 2 nurses and a doctor), over to the University of Washington for Rowan's final phase of conditioning- total body irradiation.  Honestly, the whole day is kind of a blur, but here is what I do know...

Brian did a great job donating cells for Rowan's second transplant.  He does not need to go again tomorrow.  Thank you Daddy!

Rowan's shunt surgery was successful.  The proximal end of the catheter (the one that goes into his skull to drain excess csf fluid from the area around the brain) was not working. That was the cause of his enlarged ventricles.  They made the incision right where the old scar was, and he was out in about an hour and a half.

The ICU doctors made the decision to keep Rowan intubated as a safety precaution since he would be being transported to UW for the TBI after the neuro surgery.  It's difficult to see your child this way, but we agreed with their reasoning.

Radiation went well.  Its a big scary deal...but we made it through. 

The only step left is tomorrow's transplant.

While we rejoice that we made it this far, we have some pretty big hurdles to still tackle.  While Rowan's shunt revision was successful, it apparently is not the only neurological change going on.  As they removed the sedation to see how Rowan did when he woke up, we expected big changes in his behavior.  Since we fixed the shunt, and relieved some of the csf pressure, we should have seen nearly immediate results.  However, Rowan remained pretty unresponsive.  He is not talking, moving his body, or responding to commands very well at all.  Now, they must quickly uncover the reason, and figure out how to resolve the issue as soon as possible.  As we move forward with his second transplant, this, along with the growing kidney hematoma, obviously complicates matters.  It is extremely heartbreaking and difficult to understand setback after setback...but, Rowan is a fighter, and we are trusting that God has got this.

"So we fix our eyes not on what is seen, but on what is unseen!"

2 Corinthians 4:18


  1. Praying for all of you✟✟✟ We have all been worried about our boy�� God Bless✟✟✟

  2. Carrie thank you for taking the time out to update us. We are all praying for your son. I know he is your son but he is loved by so many. You are such strong people and rowan is going to come around very soon. He's just napping to get the strength to continue on his journey of faith. He will overcome with God's help we will see him back shortly.hugs to all of you and a special shout out to dad for his wonderful work yesterday

  3. Prayers surrounding you

  4. It is amazing what can be done by modern medicine and the team helping Rowan need to be thanked, so thank you for all you hang done. Rowan, you are the strongest and sweetest young man with a spirit unbound and an inspiration to all who know you. Go forward, stay strong and we'll be with you through it all.

  5. We love your family and our thoughts and prayers are with yall every single day.

  6. You don't know me...But I have been following your story since Tanya told me about you...She is like a sister to me and Khale is my little buddy.

    I am praying fiercely for Rowan and your family!

    Lord, move mountains in Rowan's life...Touch him with your miraculous healing touch! Restore Rowan Lord...And send your Holy Spirit to comfort and give Rowan's parents peace during this battle! In Jesus' name <3

    Sending lots of love and prayers from Wisconsin!

  7. Praying praying praying so hard and so much for Rowan and all of your family it hurts to see Rowan like this this little boy I just pray so hard that he comes out of this emotionally mentally Healthy to look at his little face is so sad he stronger than I am I cried when I see him like this God bless all of you

  8. Rowan I love you little buddy! You need to come back to your momma and daddy, and everyone else here that loves you! Everyone is praying for you buddy! We know that God the Father loves you and He will heal you!