Friday, September 23, 2011

56 days...

The number of days we have spent in the hospital since we got to CO. Some days it feels like we have been here forever, but other times it's hard to believe how long it's really been. But I guess when your baby knows how to work the equipment, you know it's been too long! Despite the fact that we arrived with him having a low grade fever and diarrhea, and he will be leaving with similar symptoms, a LOT has happened in between. The biggest being his g-tube, which has made giving meds. and keeping up nutrition a lot easier. We have certainly had issues with it, but overall it was a good decision. Due to his EB, and his immune system is general, Raul has been getting sick again with infections every time his antibiotics are stopped. It seems like it will be a battle to keep him "healthy" and out of the hospital, but hopefully this round he will be out longer than a couple hours! Developmentally he has made great strides during this hospitalization, which is wonderful. He is such a smart boy! He will be followed closely outpatient, and will also receive outpatient OT/PT/Speech therapies.

56 days ago:



  1. Bless you. What a difference, not just upon arrival but from the little boy in the crib in Tutova. You can just see how his spirit has improved. Hope you are taking care of yourself also. Hugs to both of you.

  2. Wow, the difference is quite obvious! God bless sweet little Raul! Please give him a kiss for me, and I will continue praying for him! :)

  3. Raul and Caroline! I am so glad and feel privileged to have taken care of Raul! I will miss you both so much and am sad I didn't get to be his primary nurse these past couple of weeks :( I just looked through all his pictures, it's amazing how far he's come! Good luck leaving today and hopefully you get to stay out of Children's for a longer time this time around :)

    Sarah (night nurse-mostly) from Children's.

  4. Raul is getting little round cheeks! Is he gaining weight? Can't believe you two have been at the hospital for 56 days! I am so happy that you Raul is getting discharged and that Daddy is there to help you settle back in at RMH.
    I can't wait to get there again myself and spend time with both of you! For now, I will have to settle for pictures, blogs and emails.

  5. Oh my goodness, what an incredible difference. You are working a miracle. I am so impressed and inspired by you.

  6. Thanks, everyone! And thanks for commenting, Sarah! We missed seeing you as much over the last couple weeks, too. We have made it back to RMH, so we are off to a better start this week!