Thursday, November 1, 2012

VEPTR complete!

It was a 5 1/2 hour surgery...

But we are done and in the ICU.

Two titanium VEPTR rods are now between Henry's ribs and pelvis and a big "gantry" extension comes off one rid and is wrapped around his now separated ribs to make more room for heart and lungs on his left side... Dr. C could not get quite as much correction on the spine as he wanted as H's spinal cord could not tolerate movement past a certain Point...

But we will come back to CHOP for an expansion in 4 months and see if his spinal cord can tolerate some more correction at that time...

Henry will stay on the ventilator for a while... We also received some bad news about his airway and future treatment needed that I am asking continued prayers for...

It is pretty brutal to see your baby boy struggling with all 4 limbs against restraints with a tube down his throat and a bloody line in his neck while he cries huge silent tears until the next round of pain meds kicks in...

So both Henry AND his momma is begging your prayers too on this All Saints Day!

Thank you all and I will keep you posted!


  1. PRAYING, I'm headed to Mass in just a few minutes and will pray especially for you and Henry there.

  2. So hard right now, I know. Please know that I was also on a vent for 5 days, totally restrained, with a STAPH infection (among other things) and I don't remember ANY of it. So while my family agonized, I only remember sleeping.

    I am praying to the Saints for your intentions!

  3. God bless sweet Henry. I pray all the Saints will surround him and ease his pain and yours.

  4. Praying for both of you. Hugs.

  5. praying for all of you!!!
    hugs! :)

  6. I've been reading your blog for some time now but not posting until today.
    Big hugs for you, Mama.
    It's so hard to see our little ones hurting so.
    I will keep continue to keep Henry in my prayers.

  7. Oh Carla. I AM PRAYING. For you and for Henry. Please Lord just ease his suffering and give his Mama strength as she stands by his side. Let his recovery come quickly Lord, please!!

  8. Smiling big because your boy got his surgery. Given that you didn't know if it would happen due to Superstorm Sandy, this is good news.

    On the other hand, I'm praying for both of you as I know how difficult it is to watch your kid suffer with pain. Hold his hand and sing him songs -- he needs to hear your voice and feel your presence.

  9. You two are constantly in my thoughts and prayers.

  10. Carla, I am so sorry that you and Henry had to go through this when he is so young. Your journey with him has shown me how blessed Beth is with her Larson's. Same issues, but not to the point of surgery yet. Praying for both of you during his recovery. God bless you for saving his life. Hugs, Linda

  11. I have also been reading your blog for some time but have never commented until now. I have a little one diagnosed with cerebral palsey and I can only imagine how trying all of this has been for you. You and your family are very inspiring. I am praying for you and Henry for a very speedy recovery. Many blessings

  12. Katie in IndianapolisNovember 2, 2012 at 2:34 PM

    Sorry, the above was from Katie in Indianapolis ... blessings to you