AAAAHHHHHHHHH!!!!! That is the sum total of my feelings over the last two days. Yesterday morning was a typical Monday morning in the Beckwith house. Alex was watching a movie in his playroom. I was getting ready to draw labs and give meds and get our day going. I had called Alex in to his bedroom (more then once) and went to the playroom to grab him so we could get everything done. When I got to the playroom I grabbed Alex's hand to lead him to his room and our hands got caught between his body and his feeding extension. As I pulled his hand, it pulled the tube and popped right out. I felt terrible as we both immediately realized what had happened. Alex was a trooper as he was in intense pain and I had to pop another type of tube in to hold the stoma open. I got the tube in, wiped away the blood, put some guaze on and taped the heck out of the tube to hold it in till we got to the hospital. Then I carried Alex to the couch to lay while I called the doctors and packed our things. I held myself together until I got Dr. K on the phone and immediately started sobbing. I felt so bad for causing Alex pain and was so sad as I knew our trip would have to be postponed. Less then an hour later we were on our way to Houston.
Once in the ER things only got worse. Someone made the decision that we should attempt to replace the tube with out taking him to the OR and putting him under General Anesthesia as we have always done. They told me it would be pretty easy. I should have known better. It was the worst 20 minutes for poor Alex (and me). It took 3 attempts and an unbelievable amount of force to get the tube in. Alex told me it was the worst pain of his life. And then it took close to an hour to get him a dose of pain meds. Needless to say the tube will NEVER be replaced that way again! On top of that, Alex was in the ER for almost 9 hours despite having a bed waiting for him upstairs bc the ER was so shortstaffed they couldn't get him up there. In the ER his temperature also stayed in the 100.8-100.9 range so the decision was made to start IV antibiotics. We did a study to be sure the tube was correctly placed which Praise the Lord it was! We finally got up to a room around 9:30 last night.
Alex had a pretty good night. After the trauma of the day, he had fallen asleep at 5:00 in the ER and slept until 6:00 this morning. Unfortunately something just isn't right with him today. He has been extremely quiet, hasn't wanted to get out of bed, wouldn't go to music. He is just off. Everyone agrees that something is wrong, but no one is sure what! So we are waiting and watching. We are hopeful it is just the stress of yesterday. Alex's feeds are at 15 cc/hr. His meds are all going through his tube. Labs look ok.
Alex and I are still hoping to make it on our trip to see our family. As Alex keeps telling me, "No matter what, I have to be there for Mimi's Birthday". We are doing everything we can to get healthy and get home so we can head to NC.
Thank you for all your prayers and love.