This was a really tough day with some bright spots. The first couple of days after Cannon has all the clean out medicines are always rough. But today was quite a bit rougher than the previous times we’ve done this. The “Go Lytely” medicine can cause severe cramping at this stage and since Cannon has such severe sensory issues…..his sensations are heightened to absolute overload. And he just cannot cope. I was so grateful that the hospital agreed to keep him and let him ride this stage out with the luxury of pain medication. They are so caring! He probably slept a grand total of 3 hours but that was all chopped up. He just screamed and thrashed for most of the night. I felt like I was in a never ending wrestling match. He doesn’t know what he needs so his movements and screaming serve no purpose at all. I had to put pillows all along the inside of the bed to keep him from hurting himself on the railings. When morning came and I met with the rounding docs, we agreed to chat again this afternoon about discharge….to see if things had gotten any better. And we decided that we would switch him to oral Valium instead of I.V. to see how that went…..in preparation for him going home. Well, the morning and afternoon continued like the night and I was in tears by the late afternoon. I was exhausted and tired. Yes, I know those are the same thing. But I was both. His tummy was rock hard and distended, the drugs didn’t seem to be helping, and he was a total wreck! We just couldn’t believe he wasn’t starting to feel better yet. We tried taking him to the playroom and to see these beautiful girls who were at the hospital playing their harps for the kids. But he just screamed and melted down completely. So, he went back to the room with Mark and Townsend and I stayed and listened for a bit. One of the girls even let Townsend play her harp for a minute. He loved it and kept saying “Pretty music, Mommy!”
Unfortunately then, we got the news we were hoping we wouldn’t hear. I bumped into one of our doctors in the hall who told me the biopsies came back early……and Cannon did not have either Hirschsprung’s Disease or Intestinal Neuronal Displacia. That means he will have to get the surgical implant in his side. To say we were bummed, is an understatement. I turned away so no one could see the tears that sprung immediately to my eyes. I headed back to the room to deliver the news to Mark. His reaction was similar. After talking with a sweet friend who came to visit for a little while, the nurses decided Mark and I needed a break and sent us off for a few minutes while they watched the kids. (We must have really looked awful!) So, I grabbed my Bible and we headed downstairs for the Meditation Room. As we stepped off the elevator, there was our precious pastor and his wife ready to come see us. So, we all went and talked and prayed together. It was so encouraging! When they took off for Good Friday Service, Mark and I spent a few more moments praying and I shared with him some of the passages I’ve been sharing with all of you this week. I am so thankful to have had that time to get a little refreshment and perspective. Thank you to our wonderful, wonderful nurses! A couple hours after we returned, things began to get better. Cannon began to relax and stop getting so upset. The medicine’s cramping effects were wearing off. They decided to be sure so we stayed one more night.
When we got the tough news, I thought immediately of this song on the “Music” page…….”Waiting Room” by Jonny Diaz. Part of the song deals with getting the news you didn’t think was best and how you have to trust that God is wiser than you. It also says that I need to praise God whether I get the answer I want or the one I don’t. And the chorus goes like this…….”You have a much better purpose, and you have a far greater plan, and you have a bigger perspective cuz you hold this world in your hands.” This really says it all. Doesn’t it? I just need to manage to keep my eyes on the prize…..my Lord……and trust Him to come up with the best plan for Cannon and our family. I really honestly do have peace about this surgery….that it is the best chance for Cannon to feel better…..I am just sad that he has to go through it.
You and your family are in my thoughts and prayers. I pray that God gives you and Mark wisdom, strength and peace during such a difficult time. I pray that God will give Cannon relief from the pain and a sense of calm and I pray for your precious Townsend too!
Thank you from the bottom of my heart! These are precious thoughts and prayers Beth!