Early this morning, around 5 a.m., Cannon began getting the medicine he needs to clear his impaction He got this medicine through his “NG” tube which is a tube that goes through his nose and down into his gut. The medicine is called “Go Lytely.” If you have ever had a colonoscopy, it is the terrible tasting stuff you have to drink for that which helps to flush everything out of the body. Around about 11:45, we finally began seeing the “results.” The rest of the day was spent changing nearly a case of diapers. Cannon is still on his scheduled Valium dose to help him cope with the stress of all of this. It’s hard when his arms and hands are restrained, he can’t play with toys, and he is constantly getting soiled and being changed. This hospital has the most amazing Child Life Department! They are a division of the hospital that uses play therapy to help kids in hospitals cope with their hospital experience. (I am currently doing a toy drive for this department if you are local and interested.) They are very aware of Cannon and his issues since they have seen him so often this year. One of the Child Life Specialists who adores Cannon and knows of his Hyperlexia, made him this poster for the wall of our room today. Now, his beloved letters can help comfort him all throughout the day and night. Isn’t that the most loving, thoughtful idea!
This afternoon our G.I. doctor came by to see us. We were shocked at what he had to say. His opinion is that “this is not okay”…….3 hospitalizations in 4 months……and that it is time to do something radical. Cannon is not responding to treatment and he is on a tremendous amount of motility medication. The doctor recommends that Cannon have surgery to have an external button placed in his side. This button will somehow open and we will be able to give him medicine through it daily. This medicine is called an “Antegrade Continence Enema.” Basically, he explained to us that regular enemas go up “the back door” and only are able to clean out a small area in the lower colon. Cannon’s problem is almost always in the high part of the colon. This enema would access that portion and allow us to personally flush him out from the top to the bottom of the colon daily. He assured us that he will be able to swim and bathe normally but was clear that this is a fairly permanent option. He will have it for years more than likely. We were stunned! We figured that he would recommend another new diet and new meds……like usual. Not something this life changing and permanent in our 4 year old. I needed a while to process it and frankly……to cry. So, I spent a few minutes in the bathroom doing just that. After that, Mark and I had an emotional conversation where we both vented about how this was the last thing we wanted but we saw how needed it was. I, then, called our pediatrician, feeding therapist, physical therapist, and, of course, my mom. They are all reluctantly in favor of the procedure and see that it is time for this radical measure. I would be lying if I said I wasn’t worried. The biggest reason is that I wonder if Cannon will be able to tolerate this foreign object attached to his body…..with all his sensory issues. I hope it will be like other things that are hard at first but get better. But who knows…… Surgery was supposed to come up and meet with us today but didn’t. Hopefully in the morning. I am preparing a list of questions for when we see them.
I have been trying to get into this book for a while now. I began reading it and for several days now have been stuck on the same page. Every time I open it, I read this one page and then I get interrupted and have to put it down. When I pick it up again, I reread the same meaningful page again. I feel this is no coincidence. Let me show you why………. The book is called “Crazy Love: Overwhelmed by a Relentless God” and is by Francis Chan. Here is a passage……..
“To worry implies that we do not quite trust that God is big enough, powerful enough, or loving enough to take care of what’s happening in our lives. Stress says that the things we are involved in are important enough to merit our impatience, our lack of grace towards others, or our tight grip of control. Basically, these two behaviors communicate that it is okay to sin and not trust God because the stuff in my life is somehow exceptional.”
If you know me well, you know that these two things…..worry and stress…..are big struggles for me. I am such a planner and have very high expectations for myself so I find myself stressed often. And I am just flat out a worrier. I cannot deny it. So, I feel God wanted me to read those words over and over so he made it possible. Now, I leave you with that passage to meditate on with me and also another. It is from Phillipians 4:6-7……..”Don’t be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Be blessed friends!
So thankful that God is speaking into your lives, even during this very difficult time. A few months ago, Beth Moore mentioned this link on her blog chosenfamilies.org
I remembered it today, and wondered if it might be helpful.
We are praying for you,
Oh thank you Sheila! I love Beth Moore! Does she have a gift or what?! Thank you so much for your support! It is super hard but God is good….all the time! We see his footprints!
Hugs to you all! Please know that we are praying for you daily!
Thank you Emily! I couldn’t appreciate this more! We need it and we are so grateful!
Hugs! I am praying!
THANK YOU! THANK YOU! THANK YOU! 🙂
Even though I am late responding! THANK YOU for praying for us during the surgery! I think it went so well because of the love, positive thoughts, and prayers of so many! Your friendship is a priceless gift from God! 🙂