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!!!!!
3 comments:
Hi Lori.....I can comment and now you can "relate" to who I am :) Anyway...take one step at a time...it's great to hear the ups and downs as most of us don't travel on these roads but you know God is there amongst the uncertainty and just as He carried and walked you through the past two years, so He'll be with you during the change back to "normality". However you will be a changed family, fit for the service that God wants you to do at that time...we never know what we are to go through both individually and as a family so that we can serve Him better in what He wants. Thank you to for sharing both sides...actually 3 sides...of your family Christmas..it's nice to meet the family. As you walk through this year may you sense God close to you and may you be a testimony for Him in whatever way you can be :) Hugs and greetings across the miles,
Gordon, Coralie McLay & family
When that ZERO day gets here, this whole website will be in an uproar of praise!!! Keep your head up, TurtleMan
God is faithful and He will do everything in HIS timing. Praying for peace to accept His timing, whenever it may be. Love ya, dear friend,
Mar
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