A Good Week

Ahhh!  Spring is in the air and all is right with the world.  Or it was…until today when the weather decided to go all winter on us again.  Anyway, several people have been asking me why I have not been posting much lately.  The answer is pretty simple.  Zack is currently pretty stable and the weather has been glorious.  Who has time to be inside?

Zack continues to have weekly labs to check his urine sodium and his levels have been climbing steadily since he got out of the hospital.  If his numbers are still up this coming week, we may even get to change labs to every other week. How’s that for awesome news?

My (notice I did not say Zack’s) biggest challenge is that his output has been doing some funky things lately.  One day it will be super high and runny.  One day it will be thick and lower.  One day we will go 8 hours with no output and another day it will be pouring out of him.  All of this variation while eating and drinking essentially the same things each day and taking the exact same amount of medication.  I thought we were developing a pattern.  I was wrong.  Imagine that.  So far everything is OK, but I have to admit that it makes me a bit edgy.  Zack seems fine as long as he has output.  His belly hurts when the output stops and that is really the thing that has me on edge as it happened on both Tuesday and Thursday of this past week.

Zack’s stool refeeding trial started last Friday.  It did not go well.  Shortly after we put the stool into his colon (yep, that was about as much fun as it sounds), Zack got pretty quiet.  Zack is not a quiet child.  About 30 minutes later he began having pain and needing his belly rubbed.  He asked us take the syringe and suck out the stool.  Um…I hope I never need to do that.  We managed to get him into bed where he spent the next few hours alternating between groaning and crying out for us to rub his belly.  His behavior was almost identical to when he was reconnected. I did not like that and neither did Jim.

I have to come clean and admit that I am exaggerating about how awful the putting stool into his colon part was because, as I explained in my last post, I really did not want to do it.  Hey, everyone has their thing, this was mine.  It was actually pretty easy.  Zack’s nurse gave us a little tiny catheter that is used with NICU babies.  It was soft and did not hurt Zack at all.  The doctor gave us some numbing gel to use before inserting it into Zack’s mucous fistula (little hole in his abdomen below his belly button that leads to his colon).  All I had to do was suck up 30 ml of stool from his bag which we emptied into a cup used for urine collection.  After we had it in the syringe, we put it into the catheter and pushed it into his colon.  That was it.  Zack helped put the catheter into his belly and take it out.  Easy.  I was just being a baby.

Z’s doctor did not like the amount of pain he had with such a little amount of stool.  He said that is why he only wanted us to try one 30 ml of stool, one time.  At Zack’s next appointment it was decided that instead of inserting stool, we would do a water refeeding trial.  Monday night we put 30 ml of water into his colon and Z did much better.  He was uncomfortable, but not in pain.  The next day he did not eat breakfast or lunch and was pretty quiet again.  Still, that was much better than crying in pain.

Zack’s doctor and nurse and I discussed the next steps briefly in the clinic, but we have not yet tried anything else.  We also learned that almost all of Zack’s tests from his scopes are back and that they are all normal.  This means that we still do not have any explanation as to why Zack’s ostomy has such high output.

In other news, I have hurt my right quadricep and hip.  That makes me very sad.  I am not sure exactly how I did it and that is a bit aggravating.  However, last week I was unable to lift my leg to put my sock on and had trouble getting my leg into the car.  I am learning that I am not a good patient or very patient when it comes to being hurt.. The good news is that I should start physical therapy sometime this week and hopefully be back running soon.

One of my dear friends is a personal trainer and she has been helping me do lots of planks and push ups and dips.  I am sure she will come up with some other “fun” ways to help me exercise so that I do not go stir crazy, lose my mind or get too cranky with my family.  I might even break my vow to never swim laps for exercise again.  The things I do for love.

Today I attended my running group’s first team race and “helped” our coach and cheered for my team.  It was brutal not running while everyone else was having so much fun, but I am glad I got to be a part of it anyway.

Enough about my pitiful leg.  Zack doing really well.  He is happy.  He is growing.  He is not prolapsing.  He is in school.  He is playing outside with friends, riding his bike, and running around like every nine-year-old boy should.  Things are good.  I bet you did not see that coming, did you?

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I did not take many pictures this week.  I know you are shocked.  I thought I would leave you with one of my favorite pictures of Zack as a little guy taken in Stuttgart, Germany.  Those curls….those cheeks…

Hug your babies!

~ Dawn

Surgery #9 – I’ll Be Home For Christmas…

Ah….the ever-changing plans of Mr. Zack Penrod.  After planning to be gone for Christmas, packing all of our gifts, arranging hotels and wrapping our minds around celebrating in a new place, we are back home.  I have to say, there really is no place like home.  Our beds are cozier, the food is better, we have more space and we can lounge around all day in our pajamas (well, we could…). 

Zack has been feeling OK since his discharge.  He did not feel great on our ride home.  He looked sick and his stomach was hurting.  When we stopped for lunch, he asked Jim to carry him and he barely touched his food.  It was his first day off of pain medicine and fluids so this is not really surprising.  We may also have forgotten to pack Tylenol….not that we would have done that after all this time.  Sigh.  Poor Zack.

When we got home, Zack’s friends were outside and gave him a cheerful welcome home.  Zack managed to stay outside for about two minutes before declaring he was cold and tired – it was 62 degrees.  He has been sleeping sitting up (his belly pain position) since we got home. Luckily for Z, we actually have pain medicine at home AND give it to him when necessary.

Yesterday was a little better.  We finally made it to Sports Clips for a much-needed haircut.  In between turning pale and not being hungry, he had several bursts of energy that were so amazing his brothers declared themselves in time-out to escape the craziness.

We are working on figuring out this new mucous fistula.  Unfortunately, it sits at the bottom of his abdominal incision right where the waistband of his pants hits his belly.  His surgeon said she put it there to cut down on the prolapsing risk.  Another thing that might prolapse?  Awesome.

Our biggest issue at the moment is keeping up with his crazy output.  We have to start giving him bolus fluid doses through his g-tube to keep up with his losses.  He currently has his dehydrated look going on, but we feel confident we can handle it here at home.

We also had our first visit from Zack’s new Home Care nurse.  His PICC line dressing needs to be changed once a week.  Since it is a sterile procedure, I am not qualified to do it by myself – thank goodness.  I am sure I could learn.  I have been told that some families do it themselves.  I am just grateful that someone else is doing it for him as I do not feel comfortable messing with a line that ends right near his heart.  I would much rather have someone take over that responsibility!

Now that we are home, this family of mine actually expects our Christmas traditions to happen.  You know, the food part.  Trying to pull together all of the things we do for Christmas would be pretty hard, so we took a poll and picked some of our favorite things.  Today we will make two Christmas goodies, have our normal Christmas Eve fondue before church and homemade cinnamon rolls for breakfast on Christmas morning…or candy from our stockings. Come on!  You know this happens!

Our awesome next door neighbors have invited us to share their Christmas dinner with them.  I am not sure who is more grateful for the invitation, me or my guys.  Thank goodness for friends who see our weary faces and extend kindness.

Do not let our lack of energy fool you, though.  The Penrod family is counting our blessings this Christmas.  We have been overwhelmed by the outpouring of love so many have shown us. I get teary even thinking about it.  Santa coming to visit Zack on the fire truck, classmates cheering for Zack, friends giving Zack encouragement, invitations to dinner, packages and cards arriving at the hospital, doctors and nurses working hard to get us home for Christmas, all of these blessings….we are so thankful.

So while Zack may not back to normal, he is incredibly happy to be home and counting the hours until the “jolly old guy” arrives.  He wants to be allowed to sing tonight at church because, “Ms. Judy is counting on me to be there to sing to all the people about baby Jesus!”  And that, my friends, is the real joy of Christmas.  The birth of Jesus.  I am so thankful that we are home and that Zack will get to sing tonight and share his joy with others.  May we all have such childlike faith!

Merry Christmas!

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~ Dawn