When I signed off early this morning, hope was in the air. We were hopeful that the first gallon of medicine had taken and that Cannon would be able to stop the cleanse as soon as those beautiful, clean x-rays were read. Well, unfortunately that did not happen. The x-rays came back and were better but still not good. His problem area in his colon was still there but had moved down significantly since his baseline x-ray. For those of you who know and understand anatomy, the issue originated in his ascending colon and had now moved to his sigmoid colon. A nice move….but still not gone out of his body. So, that meant we had to begin the second gallon of Go Lytely. Aaaaaa! I was so sad for him! We had so prayed it wouldn’t come to this… this time. He was supposedly only half as impacted as he usually is. But, what could we do, we had to accept it and keep going. So, the entire rest of the day was spent dispensing the 2nd gallon and dealing with the “consequences.” And those “consequences” take a lot out of mostly Cannon, but us, too. His bed has to be completely stripped and remade every few diaper changes and we change our clothes frequently, too. Also, the mess from the “consequences” is indescribable (I am sure you are grateful for that fact.) and he’s begun to get very red and irritated “down there.” Which means he screams and fights every time we change him. My poor buddy! In between changes, though, he has been much more complacent and cooperative than yesterday. As long as no doctor or nurse is bothering him, he was fine for the most part. We spent the day mostly watching videos, playing with the iPad, reading books, and playing with a small Buzz Lightyear toy Townsend found in the playroom and brought for his brother.
There was one fun surprise, though. Three students for the college here knocked on our door and asked if they could come in and play some music for Cannon. We said “sure!” One guy played his violin, one girl sang, and the other girl played her flute. Songs from the movie “The Lion King.” The boys both really enjoyed the distraction and we cannot express how much these moments brighten our day!
Cannon finished gallon two around 9 p.m. and another x-ray was taken around 10. I was so certain we were done after how far the first gallon moved everything. We just had to be, right?! But, unfortunately, the last little bit inside my baby does not want to make its exit. So, we had to begin a 3rd gallon of Go Lytely solution around 1 a.m.. I was a bit devastated by this. Our day began so filled with hope. We had even started talking about when we would go home. I just hate that he will have to go through so much more! It really does break my heart!
I had a conversation today with the Attending Doctor. She has taken care of him many times before, knows him well, listens to me, and is overall…..quite wonderful. We were discussing how a Resident had told me earlier in the day that one thing was protocol and I knew that it was something we never do with Cannon. She said that he is the “anti-protocol.” They treat no other patients in this hospital for this issue……the way they do Cannon. They never use anesthesia to put in an N.G. tube. They never use Valium in scheduled doses throughout a clean out like they do Cannon. They always draw labs in between each gallon. But they don’t do that with Cannon unless they absolutely have to. They never keep a patient as long after and/or send one home with Valium to address pain management. His sensory issues change the game completely! These issues come along with Autism and are so consuming, burdensome, and misunderstood. My prayer is that over time, I can shed some light on this topic and improve understanding. I am so thankful that my child is being treated in a hospital where they consider him…..the individual. Not him……the standard procedure patient.
In conclusion, I want to share a song with you that I have been hanging onto for a while. Waiting for the right moment. We have been singing it during worship at our church off and on for some time and I have loved it so much I had to email our Worship Leader for its info. I would say that I am very thoughtful in my worship. I really try to focus on the words that are coming out of my mouth. Not anything else. The first time I heard this song, we had taken Cannon home from the hospital the day before. I was spent, emotionally and physically. I was up to my ears in new diets to try, meds to administer, and research to read up on. But mostly, I was blown away with love and thankfulness to my Lord for his provision for my family. So when I got into church and heard these lyrics, I almost couldn’t breathe. (And every time I have heard it since…..I still feel the same way.) They were exactly what my heart wanted to say to my Father in heaven but didn’t have the creative talent to put together. The song talks of the foundation established when you give your heart to God and how it allows you not to be shaken in times of trouble. Boy, is that true in our situation! We hate what our son has to go through all the time but we are so thankful for the confidence and strength that God allows us to have every single day. The chorus is what really gets me. It says……”You are my shield, my strength, my portion…..deliverer. My shelter, strong tower. My very present help in time of need.” I mean…..seriously??!! Can it be said better than that??!! It is the kind of praise my God deserves and now gets constantly thanks to my love for this song. I sing it all the time! Be blessed!
Friends……we have received so much love and thoughtfulness over the last few days! Emails, voice mails, hospital visits…….Thank You! We are blessed beyond measure to have each one of you in our lives! I know I say it all the time but I do not take gratitude lightly. So thank you for your prayers and love! It means the world to us! God bless!