November 2016

November was a busy intestinal month around here. You know how I feel about busy intestinal months. Do you remember me saying that Zack’s surgeon told me I could not stop worrying?  Yes, well…

When I wrote last month, I told you about Zack’s stoma swelling and having issues with little to no output during the day at school.  You can read about it again if you are bored here.  Those issues continued throughout the month with Zack’s pain level increasing and setting off my mama radar once again.

Near the beginning of the month, Zack prolapsed twice after being prolapse free for almost an entire year.  He was at school when the first prolapse happened and I think it surprised everyone.  Zack ended up having between 4-5 inches of intestine out and it took an hour and a half of resting on his back to get it to go back down.  Zack said it hurt a lot and I believed him.  It is hard to fathom that he went to school his kindergarten year with up to 9 inches out almost every single day.  Zack prolapsed again about a week later while in the shower.  Thankfully, we were able to get that one back in much faster.

img_63751Waiting for his stoma to go back into his belly.

This past week my mama radar was keeping me awake.  My mama radar is almost always right.  While I always question myself and drive my poor husband crazy talking things over and over and over, sometimes a mom just knows something is wrong.  Zack’s doctor had us discontinue his Cholestyramine.  One of the side effects in a small number of patients who take this drug is intestinal obstruction.  Jim and I were not sure how effective Cholestryramine had been and it made sense to us, so we stopped giving it to Zack.  Friday Zack had a great day at school with 300 ml out (his “normal” amount), he did not ask for pain medicine and his stoma was not swollen.  Yipee!

Today Zack had a good day.  Since his belly felt better, he was FULL of energy.  When I say FULL of energy, I am not exaggerating.  However, his output was really high and super watery once again.  We think the Cholestyramine thickened his output a bit and helped his sodium levels some.  However, if it truly was the culprit in Zack’s lack of output and prolapsing and swollen stoma, we will take our chances with really high output and low sodium levels.  Fixing an obstructed intestine usually means surgery and nobody wants that.  We have more options left to try to help manage Z’s low sodium and high output.  I am guessing we will have to monitor Zack’s sodium levels more closely again, but that is still preferable to more surgery.  As long as Zack does not get a stomach bug, we should be OK.  I hope.  If you are into buying stocks, I am sure that Morton’s stock should be going up as they try to keep up with the demand my son produces.

Next week we will head to Walter Reed for the first time since the end of October and Zack will have a checkup with his GI.  As usual, I have many questions and am hopeful that his doctor may have some answers.  We remain in contact with Zack’s surgeon in Boston and I am thankful for her great care and concern for Z as well.

I leave you with a picture which makes me laugh.  Our family runs in the Turkey Trot at our YMCA every year.  This year we had the good fortune to run with our family friends.  They live in our neighborhood and have two boys.  Sarah is the doctor who helped keep Zack safe during the blizzard when he was so sick.  She is the one who had the paramedics bring Z IV fluids when we could not get to the hospital because of the snow.  She spent hours with Jim helping to make sure Zack was OK.  Zack adores her.  He looks for her every day at the bus stop before school and always finds something to tell her about. He was THRILLED that she was coming to the race.

After the race, Zachary ran the kids fun run.  Rain was threatening and it was cold.  Zack decided that his eyes needed to be protected and that his ski goggles would be the best way to do that.  Jim and I ran/walked with him and he had a great time.  At the end, Sarah’s husband took this awesome picture.  I love it.  I hope it makes you smile.

Hug your babies!

~ Dawn


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