Unable to Eat.

Yesterday things were going well with Ronan he moved from the PICU to the regular pediatric unit. He was even allowed to access the playroom and ride in a wagon up and down the hall. He went to town in the playroom and tried nearly every item he saw. He sat and played with the bead toy for awhile but I think his favorite activity was pushing the toy shopping cart around.

We must have walked up and down the hall a good twenty times. I walked and he rode comfortably in the wagon. Great exercise for me. We settled in for the night with the plan being he would go home in the morning.

This morning he woke up happy and took his bottle but was having some trouble after a short time. He would stop and take a break. He started making weird raspy sounds in his throat but he got the bottle down.

The on call surgeon came in and told me they were going to keep him an extra night to ensure he could start the pureed foods ok and also so Ronan's surgeon could see him one more time. Ronan's surgeon was gone for the weekend. At lunch time I ordered from the list of pureed foods. I chose yogurt, chocolate pudding and mashed potatoes. I was sure to order a milk so I could thin the mashed potatoes. They needed to be apple sauce consistency.

When they arrived I mixed them like I do at home and made sure there were no lumps and they were thin enough. I gave him small bites. He seemed to be doing ok but began making the raspy sounds like he had with his bottle. He seemed ok otherwise so I offered him one more small bite and his face went bright red then purple then blue. His eyes were wide. I had him unstrapped and out of his chair within seconds. I turned him over and firmly hit his back.

I finally heard him cough and sat him up. I scanned for the nurse's button but it was across the room. I looked him over and he was throwing his head back, crying and making weird sounds. I made it to the nurse's button and paged his nurse. She saw him thrashing around and coughing. "Let's not feed him anymore." She suggested. I was completely on the same page. His nurse phoned his surgeon and he ordered a chest x-ray for in the morning. He was going to order it tonight but then thought about and didn't think anything would show up that soon. My parents brought Inara over after their church service. She was glad to see Ronan and Ronan was glad to see my Dad, who is his best friend. We went down to lunch and I let Inara walk the halls. She thought she was a big shot. Pastor Jim and Dori came to visit and bought Inara ice cream. Pastor Jim became Inara's buddy after he fed her the ice cream.

For supper Ronan's nurse wanted to try the pureed food again and I was beyond nervous. I was going to ask her to stay but before I knew it she had disappeared. I made sure the nurse button was right next to me and we began. I gave him tiny bites of baby food carrots. He made it through twenty bites when the sounds began. I stopped immediately hoping we could avoid him turning blue. He started the thrashing and coughing. He was trying hard to cry and was bright red.

I hit the nurse button and two came in right away. They saw what he was doing and said most likely a swallow study would be scheduled in the morning. All I know is next time I'm going to have the nurse right there. Hopefully they'll figure this out. I'm starting to become concerned this will be how it's going to be because of the surgery. What happens if he can no longer eat?