Easy Is Boring….

Ostomy appliances stink. ¬†At least for us. ¬†We can’t get them to stick to save our lives. ¬†Neither can our ostomy nurses. ¬†Neither can the companies who send us samples and give us advice. ¬†We have lots of supplies. ¬†We have glue, paste, tape, powder…You name it, we have it. ¬†I know we will find the right combination eventually. ¬†We are always up for a good challenge around here.

Zack, the only one who really has any right to complain, is pretty “chill” about the whole thing. ¬†He does say, “I’m really angry at that wafer!” ¬†Who can blame him? ¬†Another cute quote, “Come on wafer! Please be my friend!” ¬†He is learning to be a great helper opening supplies and handing them to me as needed. ¬†His attitude is amazing and I could learn a few lessons from him.

I’ve learned a lot about Zack this summer. ¬†First, he is funny. ¬†Really. ¬†He has a great sense of humor and likes to make people laugh. ¬†When he finds something funny, he gets the belly giggles and cannot stop. ¬†It’s pretty fun to watch. ¬†Second, he has such a kind heart. ¬†He really likes people and wants to be their friend. ¬†Third, Zack is a strong and brave boy. ¬†He understands that we are doing these things to help him and he puts up with a lot. ¬†He is even getting braver getting his blood drawn. ¬†Once his PICC line was out and he had to have it drawn with a real needle, it took 3 grown men and me to hold him down. ¬†Last week he was bragging that it only took 2 men to help him. ¬†This week he says he’ll only need his daddy. ¬†I love that boy.

Zack’s labs have shown that his sodium is low. ¬†There is also some concern about his magnesium and potassium levels. ¬†I think potassium is high, but I get confused. ¬†At any rate, his sodium level was undetectable in his urine this week. ¬†That is bad. ¬†So, I have to add a tsp. of salt over the course of the day to his food. ¬†That doesn’t sound like much until you actually put it on/in food. ¬†You only need a little to make things taste funky.

We are also having issues getting the boy to eat real food. Zack has always had food “issues”. ¬†His facial muscles have always been very weak and for the first three years of his life he couldn’t chew properly. ¬†As a result, he only ate soft foods. ¬†We had an oral motor specialist working with him and a feeding therapist to help him overcome his food aversions. ¬†It worked, but we were still pretty limited in foods he would actually eat. ¬†Add in not eating any solid food for a month you can imagine the fun we are having around here. It’s a real party.

Given how hungry Zack is, I also like to think of it as an opportunity to start over. ¬†It seems easy in my mind, he’s hungry, he’ll eat….in my perfect universe.

This is how it actually goes down.  Zack is super hungry.  I give him a piece of peanut butter toast.  He takes a bite and is done.  Seriously. So. Frustrating!

Take a look at our fun morning.

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He is saying, “I’m so hungry!” ¬†The toast is right in front of him. ¬†He’s had two bites. ¬†Sigh. ¬†He is being supplemented with Ensure Clear twice a day as well as with Carnation Instant Breakfast twice per day to make sure he is getting enough nutrients, but he needs solid food.

Yesterday when I spoke to his GI doctor, he asked what Zack wanted to eat. ¬†If you ask Zack, he would answer, “McDonald’s!” ¬†I don’t like him to eat there, but his doctor said it would be ok to go to McDonald’s and eat a high calorie, high salt meal. ¬†McDonald’s Chicken McNuggets and processed turkey are the only “meat” the child will eat. ¬†I’ve been trying to keep him away from junk. ¬†The truth is that he really needs to eat and get more calories, so off we went. ¬†Compare this photo to the one above:

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Like I said, it’s a real party around here. ¬†Nobody said parenting was easy!

We also discussed the results of Zack’s intestinal biopsy. ¬†It seems that something was found. ¬†I would love to tell you the actual name. ¬†I have an idea of what it is, but we were at physical therapy when I got the call and I didn’t have the presence of mind to ask how to spell it. ¬†It could be eosinophilic ganglionitis. ¬†I’m not sure. ¬†Ganglionitis is in the name and there is a word at the beginning that starts with an E….At any rate, it is not a common finding. ¬†Imagine that!

Z’s doctor also said it is an interesting finding, but that it is never good to be “interesting” in medicine. ¬†That made me laugh.¬†He also said, bless him, that he doesn’t know if it is an accurate diagnosis. ¬†The section of intestine they biopsied was taken out because it was in such bad shape. ¬†It was the section that was drained each day with a big rubber tube. ¬†It had fluid just sitting in it and was super distended. ¬†All of those things could have created the finding rather than being a true finding. ¬† I don’t know if that makes sense to someone reading this, but it makes sense to me and it is what we hope.

The game plan from here is for our doctor and the other GI doctors to research the finding, see what they think and go from there. ¬†If it is a true finding, there are things that can be done to help Zack. ¬†Since I’m totally guessing on the name, what it means and what will happen, that’s all I’m going to write about it until we have more information. ¬†I did tell the doctor that I feel both vindicated that something was found because my mom radar just felt something else was going on and also like I wanted to vomit. ¬†That’s the way it works in my brain. ¬†Welcome to my crazy life.

On a completely different and random note….I learned how to embed a youtube video today. ¬†I know you are thinking, huh? ¬†Computers are hard for me. ¬†I have not needed to do much with computers. ¬†When I have had to do something, ¬†my very talented family (husband, sons and sisters) usually do it and let me take the credit. ¬†This blog is all mine, baby. ¬†I’m pretty excited to figure anything out. ¬†One small step for you, one giant step for Dawn. ¬†I was actually able to fix my last post so you can actually see the video. ¬†Yay me!

Now if I could only figure out how to get my signature block to work I’d be feeling pretty smug. ¬†For now, I’ll just have to remain humble and type my name in the usual boring way.

Dawn

0 thoughts on “Easy Is Boring….

  1. Dawn, you are incredible! Keeping with the good thoughts and prayers for all of you during this and all future times. Pretty awesome “learning curve” you’ve been on, to say the least!! Love Zack’s very happy face @ McDonald’s.

  2. You have been so great about keeping us informed and, sometimes, entertained. The facts are good, the pictures are great. They tell so much. Can’t wait to see you next month and tell you in person how wonderful I think you are. And give everybody hugs.

  3. Hang in there ….love and hugs, katie, Rich, and Michael ; by the way : I hate computers! LOL