Home For Now

When we checked into Walter Reed last Wednesday, Zack could not walk from the parking garage into the building.  He was so weak that he rode in a wheelchair to see his doctor and then to be admitted onto the ward.  He was so pale that his feet were a freaky version of white and his tummy hurt all of the time.  I am happy to report that after his “tune-up” our boy has regained some of his spunk.  I like spunk.

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Zack’s iron levels are improving.  There are several different markers for how your body uses iron.  I do not know what they all mean, but I do know that the number that shows how hard his body is working on making new red blood cells is up.  That is good.  He has pink lips again, his ears almost have some color again and his feet are less freaky looking.  All good things.  Even better, his energy level is returning.  When we left the hospital yesterday, Zack walked on his own all the way to the car.  That makes me pretty happy and Zack noticed it as well.  In fact, Zack commented that his doctors must be crying happy tears because he feels so much better.  Amen.

One of the issues Zack has struggled with his entire life is eating well.  Through the years, we have done a pretty good job of getting enough calories into our guy.  For a few years he even tracked along the 50% curve on the growth chart.  Sadly, for the past few years he has been dropping on the chart and is currently below the 5th%.  Since surgery, Zack has had a lot of pain with eating as well and this has led to long periods of Z not eating.  The decision to give Zack and NG tube was bit hard emotionally for me and for Jim. How will Zack feel about having a tube in his nose?  Is there anything else that might happen that we do not know about?  If there is something else, do we really want to know?  We are getting a little tired here…But then we regrouped.  Just needed a moment to process.

Obviously, we wanted to do what was best for Zack.  His doctor explained that his poor nutrition could be contributing to his belly pain.  Poor nutrition hinders healing, energy levels and a host of other things.  Zack was just not getting better, so we knew we needed to have the NG tube placed.  Surprisingly, after the initial yuck of placing the tube, Zack has done really well with it.  His belly pain has dropped significantly as well.  He is currently receiving all of his calories through the pump, but is allowed a few bites of graham crackers and jello and to drink his precious G2 (lower sugar Gatorade).  Beginning next week, we will introduce full liquids as well.  I am unclear about how long Zack will be on his feeding tube, but I am thrilled he is doing well with it.

As Zack and I drove home, Jim was home getting Zack’s new Kangaroo Joey feeding pump set up.  Sadly, the guy who dropped it off did not know how it worked, so we spent a bit of time figuring it out.  That was a bit frustrating as he was supposed to be able to explain it all to us.  Happily, it is much like the one we used in the hospital.  It took a little doing, but after calling and talking to our nurses, talking to customer service and searching Google, we were up and running.  Zack loves that he has the option of wearing his pump in a backpack so that he can do all the fun things he likes to do and not be tied to an IV pole.  It is actually pretty handy.

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Z getting ready to check out the neighborhood for the first time in 10 days.

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 Wearing his snazzy backpack.

So now what?  Well, Zack seems to be having an issue getting stool out.  Over the past two weeks it has become evident that he is going several days without any output and then has a day where he becomes very uncomfortable and distended and then it all bursts forth.  Real life people, real life…When this happens he is in considerable pain, vomits and bleeds from his bottom.  We know that this is most likely from his stricture at the anastomosis (reattachment) site between his rectum and descending colon and that the stricture needs to be fixed.

Obviously, we would like to have this problem addressed as soon as possible.  After much discussion between our doctors here and Z’s surgeon in Cincinnati, we have decided to head back to Ohio in the near future.  To fix the stricture, Zack will go to the OR where he will be scoped before the procedure to see how the anastomosis (reattachment) looks.  His surgeon will then dilate the stricture with some sort of balloon.  Once that is done, she will scope him again to make sure that there are no complications and that is it.  It is not surgery, but it is performed in the OR.  Usually, this procedure is a same day procedure, but because Zack’s body has been difficult lately, his surgeon wants to admit him overnight just for observation.

Zack’s surgeon will be out-of-town next week.  Jim has a business trip the following week, so we are trying to decide if he will cancel his trip or if we can wait a few days longer to travel to Cincinnati.  We should have it all planned out by the beginning of the week and look forward to solving yet another issue for our guy.

One lingering concern is whether or not Zack is having motility issues as well.  When we went to Cincinnati for motility testing, all the tests came back normal.  That was before he was reattached.  Now that his intestinal tract is put back together, there is some question as to whether or not his motility is actually normal. It does not feel as though it is…but that is a problem for another day.

Today we are happy because Zack is home to help celebrate his big brother’s birthday.  He was most upset yesterday when his tummy was not feeling well.  He was crying because he needed to get home to his big brother for his birthday.  He told everyone he was feeling awesome, even though he clearly was not, because he did NOT want to stay another moment in the hospital.  He got his wish and is so excited to be home to celebrate Jake’s birthday.   I think he is most looking forward to giving birthday spankings and presents.  He’s all about the presents.

Thank you to everyone who helped us over the last week and a half.  We appreciate all of your visits, meals and calls.  Thank you to everyone who helped shuttle Jake to and fro and to our awesome friends who put together a birthday surprise for Jake at his Youth Group overnighter.  My heart was happy to know that Jake’s birthday was extra special.  You guys make me smile.

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Um.  Yum!  Chocolate cake!

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My 17-year-old.  Wow.

When we get more information about our trip to Cincinnati, we will update our blog.  Until then, I am hoping for a few uneventful days.  It is about time.

Hug your babies!

~ Dawn

 

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

Pathology Results

Eosinophilic Ganglionitis. Looks strange. Hard to pronounce at first. The reason behind Zack’s discomfort. We have a name. And that’s about all.

I can’t really tell you much about it, although I’ve read every article I can find on the subject. I “kind of” understand what I am reading, for a moment and then I don’t. My brain starts to shut down after reading such big words and trying to figure them out! I know, you thought I knew a lot, you are not wrong. BUT, this one is a bit tricky.

Zack’s GI doctor took time out of his crazy busy day last week to meet with us to go over a new course of action. I appreciate how kind he is to us and how patient he is with our (my) zillions of questions. I feel very confident in what he has described to us and let’s face it, there really are no experts in eosinophilic ganglionitis. I’m hoping our doctor will become the expert because he’s figured out some wonderful way to treat Zack and everyone will flock to him for advice. A girl can dream….

Our plan is to have Zack go under general anesthesia again in the next few weeks for an endoscopy. If you’ve read any of my other posts, you know this is not my idea of a good time, but Jim and I feel it is important. Z’s doctor needs to have a starting point from which to begin treatment and a way to measure the effectiveness of the treatment.

I believe that his entire intestinal tract will be studied. He’ll have a breathing tube and “they” will breathe for him as a scope is placed down his esophagus looking at every part of his upper GI tract. Since he has two stomas, the doctor can look through them both to see his small and large intestines as well as looking from below for evidence of pesky eosinophils. Once we see how much or how little of his GI tract is affected, we can formulate another plan on how to treat Zack. Or his doctor can…you know, because he is the real doctor. I just play one at night.

I have been trying to gain an understanding of the role of eosinophils. What are they and what do they do? I read this from Cincinnati Children’s Hospital:

Eosinophils have many diverse functions

The functions of the eosinophil are varied, some of which are very similar to other white blood cells. They are implicated in numerous inflammatory processes, especially allergic disorders. In addition, eosinophils may have a physiological role in organ formation (e. g. postgestational mammary gland development).

Eosinophilic functions include: movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses.

Eosinophils can be either helpful or harmful

At one extreme, such as in the illness erythema toxicum, eosinophils play the role of a beneficial modulatory element or an innocent bystander. At the other extreme, represented by conditions like Loeffler’s disease and idiopathic hypereosinophilic syndrome, eosinophils are linked with permanent pathologic changes.

That makes sense. Then I read the articles our doctor gave us and it got confusing again. So, this is what I do know:

1. We have a name for what Zack has going on in his intestines. He’s had it for some time, maybe his whole life, now we just know what to call it.

2. It is rare.

3. People don’t really understand it.

4. It can cause pseudo-obstructions like Z had in the hospital.

5. It seems to respond to systemic steroids.

6. We have a doctor we feel extremely comfortable with and whom we know will do all he can to help our guy.

7. My brain could never handle being a doctor.

Zack’s doctor said that after we read the articles, we should send him our questions. I’ve decided that most of my questions are probably unanswerable. Except the part where I ask him to explain eosinophilic ganglionitis to me again, and then again, until my brain finally gets it.