Re-feeding Trial

Things are going pretty well around here.  Actually, they are going better than they have been in a very long time.  Zack is gaining weight and growing.  That is pretty amazing.  Zack is hungry.  That is new.  Zack is sleeping through the night more often.  That is beyond blissful.  Zack is happy.  That is my boy.

Today we had our regular Monday sodium check at the hospital.  It Is holding steady at around 50 mEq/L which is a good thing.  His output continues to be higher than it should be but is also unpredictable.  It would be nice to get that a little lower, but clearly things are improving.  Even better, Zack has made it almost three months without prolapsing.

Our next step is to do a re-feeding trial with Zack.  Basically, we get to put stool from his bag back into his body through his mucous fistula which leads to his colon.  Then we get to see what happens.  There are more steps involved, but I’ll spare you the nitty-gritty.

That does not sound too awful.  Other than sticking a tube into his body through an opening in his belly and messing with stool, it should not be too bad.  We have done worse things over these past few years.  So why am I soooooooooooooo not looking forward to this?  Seriously, I have no desire to do this.  My anxiety about re-feeding beyond ridiculous and really not at all like me.

I spent some time contemplating this today.  I think that the idea of putting stool back into Zack’s colon again is bringing back memories of how sick he was after his reconnection.  I am dreading waiting to see if he will distend again and if he will have pain again.  I knew things were hard after his surgery, but I did not realize how strong my emotions would be a year and a half later.  Part of me is saying, “Suck it up, Buttercup.”  The other part of me is saying, “Please don’t make us do this!”

Happily, I feel like at least I understand where the emotion is coming from now.  Zack’s doctor told him today that we have to do the test so that we can get closer to being done with all of this.  He is right, of course, and I think I was the one who needed to hear the pep talk.

At our visit to the doctor today, we practiced getting the tube into his belly.  Zack did OK.  Not great, but better than he has done for other procedures.  There were tears.  He tried to resist….well, he did resist…but we finally got it done.  All of the work he does with our social worker on Monday mornings seems to be helping as Angry Badger has not made an appearance lately.  He’s been lurking, but Zack has kept him at bay.  Zack told me later that having the tube in his belly was not too bad, it just scared him.  He also said that his belly hurt with the water inside.  Now that he knows what it feels like he said he could be braver next time.  Maybe I can learn from him?

We also learned that some of Zack’s test results came back.  So far everything is normal.  I was a little disappointed, but not really surprised.  We are still waiting for a few more things to come back…fingers crossed they find something.

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My Little Lego Lover

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I LOVE watching Zack build his Lego creations by himself.

In other news, my running coach, Dave Griffin, writes a column for our local paper the Carroll County Times.  A few weeks ago Dave talked to me about the possibility of writing a piece about how running helps me cope with the stress of having a chronically ill child.  He read most/all of my blog posts (bless him) and knew a lot about Zack and how much I rely on exercise to help me deal with the craziness that is my life at times.  If you are interested you can read it here in the Carroll County Times or here if you are on Facebook.

Until next time….

~ Dawn

 

3 thoughts on “Re-feeding Trial

  1. Things sound so much better! I really pray the other tests come back with something concrete and that can be fixed! I read the article the other day and it is really god.

  2. I am so happy that Zack is doing better. I pray for him all the time and he is never far from my thoughts. Tell him there are a lot of people who love him and want to cheer him on. Thank you for sharing his story, it makes all of us feel really stupid to think we might have it rough. We obviously don’t have a clue. Kiss him for me.

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