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I told you in Dec. I would post a picture at the beginning of each month to show this number getting smaller and smaller. Our goal will be around 400-500mls. Last night as I was hooking Caed up, we talked some more about his tube being gone
forever (Lord willing....) very soon! He got a weird look on his face and became very quiet.
Me: what's wrong Caed? Aren't you excited about that?
Caed: no....I don't want it to be gone
Me: Are you crazy little boy?.........when you get your tube out, then you'll be able to sleep on the TOP BUNK!....and get to wear the zip up pj's you love so much.....EVERY NIGHT!
Caed: I know...but I'm just scared. I don't want them to "pull it out." It hurts.
Me: No....Caed. This is an easy one. You know how it comes out. It'll be just fine!
Caed: But what if I have to go back in the hospital and have surgery for 2 hrs??? (dr. M said they might have to do a little surgery to sow up the stoma if it's gotten too big....however, Caed knows nothing of THAT!)
Me: Caed, you need to stop worrying. Taking your tube out is very easy. That will be a day when we celebrate! No more tubes.....no more hook ups. We can have a big party, ok?
Caed: (shrug.....and not very convincing reply) ok......if you say so.
We said our prayers, but Caed continued to remain (unusually) silent. This morning, Reagan told me she gave Caed a "pep talk" after Todd and I left the room. Oh, how I wish I could have heard it!!! There IS a countdown. A countdown to less hrs on the pump and lower mls.......no more days of mixing formula and priming the pump....no more monthly deliveries from Home Health.....and no more (dreaded) changing buttons periodically. The countdown for me is one of normalcy. "Normal" bedtime routines.....simply brush teeth, crawl under warm covers, prayers, and bedtime kisses. No more waking in the middle of the night to unhook Caed......no more waking in the morning only to find his tube has leaked and (stinky!) formula has soaked through to the mattress. No more "crusties" (as Caed calls the dried fluid that forms around his stoma)...........
I literally could continue writing example after example. My life has been centered around short gut.....hospitals....procedures/surgeries......fear......medical terminology I had never heard of.........pain!......blood draws......traveling to drs. in NE.......and being the mommy of a "sick" little boy for almost 2 years. I want normalcy more than I could ever describe, and yet I'm afraid I don't remember what that fully means anymore.
I think I'm a little like Caed on this one. I WANT IT GONE!!! And yet I'm scared..... I can recall this same feeling with that awful central line. Hated the thing, but yet it was security for me. I was fearful of life without it. I thank the LORD for His continued healing and the fact that Caed has NO need for it anymore! I know it will be the same story with his feeding tube. Just as I am reassuring Caed that "all will be fine......stop worrying!".........I know God is reminding me of the very same thing in my own life.
Thank you Lord for Caed's sweet little voice tonight saying, "Fank you God for healing me and making me better....."
YES!!! We DO thank you God! And don't take any of this for granted.
YOU ARE FAITHFUL TO THE END!!!!!