Zachary’s Tune Up

Remember my last post?  You know, the one where I talked all about Zack having a good day?  Do you remember how I wrote about Zack eating a turkey sandwich and loving it, but then having some pain?  Yes, well….it did not end well.

Zwr8This is Zack on Monday afternoon.  This is Zack Monday evening and Tuesday morning and Tuesday evening.  I bet you are getting the idea.  To make things more fun there was vomiting and blood.  Oh, did I forget to mention that Daddy was in Germany?  We know how to do fun around here.

Happily, Zack’s GI and I talked and decided it was time to admit Zack for a tune-up.  After 5 1/2 weeks of not feeling well, we were getting worn down by the daily pain and the bleeding and the lethargy.  I was actually really relieved that Zack was going back to the hospital and hoped that we would be able to figure out what was going on with our guy.

We learned that Zack’s iron levels were pretty low, so he received an iron infusion of Dextran.  We were told this drug would help improve his iron levels in a few days and his lips are actually almost pink again.

As I have mentioned before, Zack’s nutritional status….well…it was/is stinky.  Zack had an NG tube inserted so that he could receive enteral feedings.  That made him sad, but I think he has become resigned to the fact that he needs the tube to feel better.

Today Zack had a scope under sedation to see if the doctors could figure out why he keeps bleeding.  I told his doctors that I was praying that they would find something and I was not lying.  It has been frustrating watching Zack in pain for so long.  It has been hard to see him like that and to know something is wrong, but not to know what “it” is or how to make him feel better.  I found myself feeling anxious that Zack would have the scope and the doctors would not find the source of the blood.

Happily, they found something.  I realize that sounds a bit crazy, but honestly, I was so relieved that there was a reason for some of Zack’s symptoms.  I have not had time to research or ask questions or anything, so here is the very little bit I know.  The site of Zack’s rectal anastomosis (reattachment) has developed a stricture.  In English, his reattachment site has narrowed.  Instead of being a big circular pipe, it has now constricted and become a little pipe.  This makes getting stool through problematic.  It is also irritated and bleeds easily.

The part I do not know is what the heck we will do about it.  Zack’s doctors here and his surgeon in Cincinnati will come up with a plan soon.  I do know that treatment will most likely involve dilation of the area with balloons of some sort.  This procedure will require sedation, but most likely not surgery.

Zachary is not handling sedation well at the moment.  He gets very upset and starts hitting, kicking, biting and screaming.  It is very overwhelming to him and to me and it makes me very sad.  I asked him about his behavior after his procedure today and he told me that the sleepy juice makes him feel funny and he does not like it.  I cannot say that I blame him, but his behavior is out-of-control and Jim and I are struggling with how to help him.

Speaking of Jim, Zack’s day was made ten thousand times better when his sidekick came straight from the plane to see his boy.  Zack informed me that I should head home because “Robin” was back.  Zack is Batman after all.  I was worried “Robin” might be exhausted by the time change and plane ride, but he reassured me he was ready to spend time with his boy.

I hurried home in the pouring rain….or crawled home at 40 mph…you decide.  When I got home, Jake Penrod had the entire house cleaned.  My floors were vacuumed, the dishes were done and the yard was mowed.  I mean, come on!  How great is that?  So, thank you, Jake.  You made your tired mama proud.

One last thing…tonight is my first night home since last Wednesday.  My computer was not able to find the wireless connection at Walter Reed.  My sisters gave me a lot of technical mumbo jumbo as to why, but I heard blah, blah, blah.  All I know is that I cannot write any blog updates while we are at the hospital unless I want to try to write them on my tablet.  That will never happen.  Now that Jim is back and we are back to our alternating night schedule, things should get back to normal.  Hopefully, Zack will only be at the hospital until Friday.  Fingers crossed!

I am off to my comfy bed to get some good sleep.  But first, I’ll leave you with some pictures of our stay so far:

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Zack and Jake reenacting a scene from Star Wars

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The Hero

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Big Brother soothing his buddy.

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Super Heroes

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Zack and Aslan the Leonberger Puppy

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