Hospital Holiday day 5

Today was a quite a day....When I arrived at the hospital, Caleb was still on his trach mask and was being prepared to be transferred to the floor! Once we got the the floor I visited with a pulmonologist who suggested that we not do a sleep study because it was obvious to him that Caleb needed some partial ventilation for his lungs sake. He encouraged us to consider ventilation at home as well. My heart was quite heavy as I contemplated what this means for Caleb's future. As the doctor and I were visiting, Caleb was having a difficult seizure/respiratory episode. After quite a few minutes I suggested the doctor bag him for a minute because sometimes that helps him at home.... apparently they aren't used to children needing to be bagged, so they quickly realized they weren't equipped to handle Caleb's level of care. I went to the cafeteria to grab some lunch and was paged over the loud speaker to return to Caleb's room. They were preparing to send Caleb back to the PICU and were planning for us to begin the process of learning how to take Caleb home on a ventilator. WHOA! I was feeling rushed into making a ventilator decision before I even had a half hour to process the whole idea. I requested to speak to the trach/vent specialist so I could have someone to talk it through with. She was so helpful and realizes that this is a difficult decision for us. I decided that we didn't want to move forward until we had some time to give it some careful thought. So 2 hours after being transferred to the floor, and we were headed back to the PICU. The doctor and nurses on the floor were so caring and kind, and they all hugged me good bye... I got a picture just to prove that we really did make it to the floor for a few hours! When I got back to the PICU, our friends down the hall had left us a treat and a note that said "welcome back Caleb." They were all sweet about our return and we even got our same room back! The next few hours were spent coming up with an appropriate plan for Caleb that we all felt good about. Ultimately I think we're headed toward ventilation, but for now I want to give Caleb some more time to show us how he is going to do. They are going to put him on a ventilator at night for the next few days to see if they notice a difference in his comfort level and the carbon dioxide levels in his blood. We'll also be consulting with neurology and GI doctors over the next few days to discuss additional options for Caleb's comfort and care.... I've felt the weight in my heart of making some difficult choices and of finding the right balance for little Caleb.
Caleb has so much courage. I know that a part of his mission includes these tender times at the hospital, and I'm so blessed that I get to be a part of sharing his influence with others. It is a privilege to be his voice- I am so humbled to be his mother...I LOVE YOU Caleb, more that you will ever know...

Caleb on the ventilator


Now he just needs a trach mask

Proof that we really did make it to the floor, even though it was only for 2 hours!