Update

After my last post, Zack’s doctor and I decided that it would be best to have Zack seen in the clinic.  Over the past two weeks, we have avoided hospitalization three times.  I think I needed the visit for my mental health as much as Zack needed it for his physical health.  One of the things that is hard to understand about living with a child who is chronically ill is that they can be fine one minute and really sick the next.  As a parent, it can become tricky to navigate the areas between when he is not quite himself and when he is needs to be seen.  Trying to determine when to call the doctor, when to stay home and hoping you are not putting him in danger can be emotionally exhausting.  Fortunately for us, this year we have enjoyed a nice respite from the hospital.

At Zack’s visit with the doctor we decided that it was time for Zack to have some imaging done.  We had been discussing doing this for some time.  Given his crazy high output a week prior and three days in a row of limited output (along with a prolapse thrown in to make things even more fun) it was time to be checked.  We tried to get him into radiology that day, but they were completely booked.  That made me a bit sad because the best time to see what is happening is when he feels bad.

The next morning we headed back to Walter Reed for a small bowel follow through. This test requires drinking barium.  Barium is a nasty, chalky white substance that makes Zack literally gag.  After a few swallows and a couple of gagging episodes, we decided that we should try giving it to him through his g-tube.  Have I mentioned how much I love that thing?  Maybe once or twice?

Zack’s small bowel follow through was done using fluoroscopy.  Fluoroscopy allows the radiologist to see how the intestines are moving in real time.  Zack’s intestines moved the barium pretty quickly until a spot near the end.  Then it seemed as though the barium kind of pooled in one spot and took forever to go the last little bit up and out of his stoma.  Evidently this is normal and no issues were found.  That frustrated me, but I should not have been surprised.  Zack has had this test before.  At that time he was really sick and no issues were found.  Zack’s doctor had warned me the day before that we only had a 30% chance of finding something, but still I was hopeful.

The hardest part of the test was hearing Zack ask the radiologist if she had found the problem yet.  He really wanted them to find the reason his belly was hurting.  Zack’s doctor helped put things into perspective.  He said that, though frustrating, not seeing dilated loops of bowel or obvious areas of poorly functioning intestine decreases the likelihood of needing another surgery soon.  That is a good thing!

On Friday Zack was able to attend school.  He did ask for Tylenol for his belly, but otherwise had a seemingly normal day.  Friday night he had a great time playing in the neighborhood.  I’m attaching a video of one of the many reasons I love it here (it may take a few minutes to buffer).  All of the kids were playing lacrosse when this happened:

If this does not give you warm fuzzies about how great kids are today, then I do not know what will.  Thank you to Liam for sharing this video with me.

Saturday was fun as well with a Memorial Day gathering at a friend’s house.  Zack’s stoma was really big that day, but he was running around like a maniac and having such a good time.  Sunday came and he slept until 8:30 a.m.  I had to check and make sure I was not dreaming.  Zack’s output was really high again.  He had a good day, but was exhausted at bedtime.  Falling right to sleep is not a thing that happens often here and he was out before we said prayers.

Early Sunday morning at about 2:30 a.m. (my favorite time of day..) Zack came in to have his bag emptied and was asking for ice water.  When I emptied his bag and saw that he had 600 ml in it, I was a bit worried.  I got an extra dose of CeraLyte in him, gave him an extra Imodium and two sodium chloride pills.  Then he started complaining that his belly hurt and needed to be rubbed.  Soon he was asking for Motrin and just could not settle.  He was acting as though he was going to vomit and just generally freaking me out.  I finally got him to sleep about 3:30 in the morning, but I was not thrilled.

Zack and I had a quiet morning in the basement.  He beat me at MarioKart.  I am pretty sure he cheated…just kidding.  He also spent the morning licking salt from a bowl, eating sodium pills and drinking water….as kids do….right?

See that little bowl of white stuff?  That is salt.  He licks it like candy.  See that white pill?  That is sodium chloride.  He gets 7 a day, in addition to his CeraLyte, and is often still low sodium.  That’s a LOT of sodium!

Jim and I pumped him full of CeraLyte again to help bring his levels back up.  I tell you all of this to illustrate to you that while Zack is “fine”, something is not right.  The test may show that his intestines are not obstructed, but this weird high output, no output thing is unusual.  Do we need to go to the hospital? No.  Do we need to text his doctor? No.  Do we have to watch him?  Yes.  It is hard to relax when things are just not right.

People often remark that Zack looks great.  He does.  It is hard to believe he was not feeling well earlier when they see him running around like a maniac.  It is hard for Jim and I to believe at times as well.  But, that is how it goes with him.  Jim likes to say it will either get better or it won’t.  Profound, I know.  Today we are hoping that Zack will perk up and that the sun will come out so that we can go to the pool.  We have fun things planned for this day.  And that is what we do.  We try to live each day as if everything is alright.. until it isn’t.  Otherwise we might just go crazy.

Update to the update:

Zack did go to the pool.  It was freezing!  His buddies from our neighborhood were there and he was unusually quiet.  His cousin called and invited him to our local fair.  We went.  He had fun and went on rides, but was quiet.  Zack is not quiet.  Thankfully, last night was uneventful.  I sent him off to school today with a kiss and a hug and  fingers crossed that today will be a good day.

Zack and Tom at the fair.

Hug your babies!

~ Dawn

Learning about life on the playground…..

I debated with myself about this blog post.  Do I really want to write about this?  Do I want to tell people about the hard things that happen to my child?  Wouldn’t it be easier to just share medical stuff?

This past week several things have happened to my child that have left me sad.  Things that have made me want to shelter Zack forever from mean and scary things.  However, as his mom, it is my job to help him learn how to be confident in himself, take care of himself, stand up for himself and to be safe when he is not with me.  At the same time, it is my job to teach my child to be kind to others, to be a good friend to others, to see past differences and to see the good in the world.  All parents want that for their children….at least I hope they do.

Back to this week.  A few days ago we learned that a friend was telling others that Zack said something that was untrue.  I asked Zachary about it and he dissolved into tears.  First of all, he did not even understand what the words meant the child accused him of saying.  Secondly, he could not understand why a friend would say something that was untrue.  He came to the conclusion that the best decision would be to “break up with his friend for a while.”  I was proud of Zack for being able to reason through things and we were able to have a great talk about how a true friend behaves and what he can do to be a good friend in return.

Then we learned that on the playground at school there is a “secret” club of a handful of boys.  They decide who can and cannot be a member.  Guess who cannot be a member?  Guess who wanted to be a member?  Another parenting opportunity to discuss what being a good friend means.  We were able to talk about how bad it feels to be left out and the reasons having a club that excludes kids like that is not nice.  The second incident in one week that hurt Zack’s heart in a way he had not yet been hurt.  Is this why people home school?  I am just joking….mostly…. .

Yesterday, however, Zack was different.  Zack was with a friend in a supervised play area at a local gym when several other children did not want him to play.  They cornered him and began to kick him in the stomach (I know, right?  His stomach of all places).  They also tried to make him leave by pulling him by the leg and pushing him down. I am still not sure how on earth the adults in the play area did not see what was happening.  Happily, one of the boys who was with Zack was able to get help.  The boys were made to leave and their parents had to come get them.

This time Jim and I had an entirely different talk with Zack.  We discussed how nobody has the right to hurt him like that EVER.  We told him that in that case he is allowed to fight back to defend himself. We asked him if he thought about the things he learned in karate class, but I guess in the moment he was just really scared.  We totally understand that.

Jim and I were pretty upset by the entire situation for many reasons.  I am not going to list them all here.  We are really thankful that Zack’s stoma and g-tube were not damaged.  Zack has no limitations for normal play, so there is no reason why a supervised play area would be off-limits to him. We are really thankful for the mom of the friend Zack was with for taking such good care of him when the gym informed her of the situation.

As a mom of any child, situations like these would upset me.  As a mom of a child with special needs, I feel even more upset.  As wonderful as I think Zack is, I am not dumb.  I realize he is different from other children his age.  I can see it.  I know that in life often the weakest ones are picked on the most.  I do not like that, but I understand that it happens.  Jim and I will continue to do our best as Zack’s parents to help him learn to navigate this big world of ours. We will continue to teach him that you do not have to like everyone or play with everyone, but you do have to be kind.  We will continue to teach him that though there are some people who mean, most of the people you meet will be nice. We will continue to teach him how to be a good friend.  Hopefully, other parents will do the same……

I’ll leave you with this video from the 2017 Pro Bowl.  It fits with what is in my heart right now.  What an example we can set for our children if we choose to love.  Love those who are difficult.  Love those who are different than you.  Love your neighbor………BE KIND!

Hug your babies!

~ Dawn

Vacation and Boston

Oh vacation, how I have missed you so.  Our family had a great time visiting family in Connecticut, playing in Bar Harbor, Maine and exploring Boston between doctor appointments.  Here are some of our highlights:

Boating in Connecticut.  Zack’s first time on a fishing/lobster boat and he loved it!  He was a man of many questions and is forever bonded with Captain Don.

IMG_20160813_231343_01Zack helping Captain Don drive the boat.

IMG_20160813_162355656Jake and Jim could get used to Zack doing all the work.

IMG_6164Zack and his shark.  Not bad for a first fishing trip!

IMG_20160813_220526112_TOPThe Co-Captains relaxing after a hard day on the water.

Exploring Acadia National Park.  I am not sure how we have so few pictures of this.  Here are Jim and Zack on top of Cadillac Mountain trying to pick up one of the islands in the harbor.IMG_6152

Bar Harbor adventures.  Jim, Zack and I took a 4 hour sea kayaking tour.  See those islands in the picture above?  We paddled to the third and took a break.  Then we went around the third and back into shore.  We saw some porpoises and bald eagles.  Happily, we did not see any of the sharks that also inhabit the harbor because that would have freaked me out.

IMG_6118 IMG_6110We rode the carriage trails in Acadia National Park on bikes.  We ate popovers at Jordan Pond, frolicked on Sand Beach, drove around the entire island and shopped and ate and had a grand old time.  Zack and I also went on a date on Diver Ed’s boat.  Diver Ed scuba dives into the harbor and videos the ocean floor as he goes.  The video is broadcast on board.  Then he comes up with some of the creatures he finds down there and the kids get to touch them all before releasing them back to the ocean.  Zack was so enthralled with the whole thing until the touching part.  He finally worked up the nerve to touch a few things.  Can you tell how hard it was for him to do it?

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After a week of fun, we headed to Boston to see Zack’s doctors.  First we met with Zack’s surgeon.  It was strange to see her in a new hospital, but she was as awesome as ever.

While Zack is currently doing better than he has in years, we still have some concerns.  You may have noticed that I have been talking about how his stoma has been swelling which constricts his output during the day and then goes back to normal when he rests.  His surgeon and doctor here both feel he is prolapsing internally.  One thought is that where his stoma was stitched down internally actually worked this time, but his intestines before that point internally are still trying to get out.  We think they are getting stuck at that point, cutting off the flow.  Thankfully things have been resolving well so far, but it is not supposed to be happening.  We have a plan in place now for IF things go wonky.

Today we met with one of the leading pediatric motility experts in the nation.  He asked us lots of questions.  He said that Zack’s case is interesting because there is a lot going on that does not make sense….yet.  He is hopeful he can figure out what is happening with Zack.  He did say that just because Zack’s small intestine manometry test was normal does not mean his small intestine is functioning normally, just that things are being pushed through.  We talked about Zack’s biopsies that showed eosinophilic ganglionitis, the possibility of autoimmune issues and other things, but he wants to review all biopsy slides, testing, fluoroscopies, manometries, CT Scans…basically everything that has already been done…for himself before giving his opinion.  Jim and I appreciate that and think it is a good idea.  Of course, Zack’s files from both Cincinnati and Walter Reed are so incredibly large that it will take some time for him to get through it all.

The doctor said that there are several drugs we can try to help slow down Zack’s output.  He wanted to talk to his surgeon about a few things first, so we do not have a plan for that yet either.  Even though we left without a plan, Jim and I felt that he was very thorough and we really appreciate that he wants to understand why Zack’s body is behaving this way.  Why does he have secretory diarrhea?  Why doesn’t his colon work?  Is there also a problem with his small bowel?  All questions his other doctors have asked before and have not been able to answer.  Somehow I feel good about his method of investigation and have hope that perhaps he will be able to narrow things down a bit more.  It is good to have hope.

While we were in Boston we were able to connect with some of dear friends that we had not seen since 2011.  We spent a great day at their home catching up.  Why do we wait so long to do these things?  Oh yeah…intestines.  We were also able to see a friend from our time in Minot.  Her daughter has been in the PICU since DECEMBER!  December people!  I am happy to say that her daughter is getting close to getting out of the PICU and to finally going home.  It is amazing to see her faith and strength.  It was a blessing to me to be able to spend the evening with her.

So there you have it, an exceptionally long update.  We are so thankful for our vacation and our time in Boston.  We are thankful that we had a fun time as a family.  We are happy that we were able to come to Boston for a non-urgent visit.  We are happy to have scoped out the area, found a hotel close to the hospital and to know we have friends close by.  While we did not have time to see all of our friends here, we know we will be back! Until then…

IMG_6104Hug your babies!

~ Dawn

Just A Normal Kid

Today is Monday.  Every Monday we head to the hospital so that Zack can have labs drawn and work on some other things.  We leave our house at 5:45 which is brutal for Zack and for me.  At our last visit, Zack’s sodium levels were doing so well that we were allowed to miss a week.  We still had to drive in last week for another appointment, but we got a week off of labs.

This week both Zack’s doctor and main nurse were out which meant our routine was off.  We usually arrive and take his urine sample to the lab in a STAT bag so that by the time he finishes his first appointment those results are back.  Today the lab said they could not find his urine.  Interesting.  Zack produced another sample and we headed down to the lab to see what had happened to the first sample.  Because Zack’s regular nurse was out, the orders for his labs were not in the computer.  The technician who received it could not find the orders, so he placed the sample in the refrigerator. That would not have been bad but, unfortunately, he forgot to tell the other people in the lab it was there.

Two and a half hours later, the results were in and showed his urine sodium was low again. The actual number was 11.  Below 10 is undetectable and what we are trying to avoid.  That meant Zack got to have another blood draw.  Not many of the nurses in the clinic do PICC-line blood draws, but one of our favorite nurses does.  That made Zack (and me) pretty happy.  Zack also sweet talked her into changing his PICC dressing since he had been waiting so long and did not want to waste his precious after school time getting it done at home with his home nurse.

Because his level was down we “get” to go back again next week.  It is not too terrible, though.  We enjoy seeing all of our friends at the hospital.  Zack likes giving all of his nurses hugs and I like talking to them and learning all about their lives.

After all of the delays today, Zack only made it to the last hour of school.  He was not too disappointed because that hour included music class and PE.  Zack loves PE and is so happy that he is allowed to participate once again.

Zack has been dreaming of the day when we would finally allow him to participate in “real” sports.  Last summer he had tennis lessons but missed a LOT because he had surgery unexpectedly.  Zack has had swim lessons but had to stop due to prolapsing and surgery.  Do you see a theme?

Last week his good friend asked him if he would like to go to Buddy Day at his karate school.  We knew there would not be any physical contact involved, so we figured his PICC-line and stoma would be safe. Since we knew it would be safer than running around the neighborhood like a maniac, Jim and I decided to let him try it out.

Zack was grinning ear-to-ear the entire forty minutes of class. He LOVED it!  Who cares that he had trouble staying focused and stood on his head?  He never had the chance to play T-ball or soccer and everyone knows that kids spend plenty of time doing that or picking flowers or looking at the clouds during those sports.  Who cares that he had trouble moving his body the correct way?  He was so excited to be learning karate.  While I do not have the words to capture his enthusiasm, I do have pictures – taken through a glass window on my blurry phone.

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A glimpse of Zack’s smile!

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I think they were working on their reflexes.

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While we do not know if we will actually sign Zack up for karate, tonight was awesome. Zack thinks having a uniform would be cool.  (He was disappointed when he learned he did not need one for tennis.)  We still need to run it by his doctor and talk to the school to see how comfortable they would be having a child with a PICC-line, an ostomy, and a g-tube in class or if it would even be possible.  We know there is no contact or sparring at the lower belts but even so…we need to give it more thought.

Even if Zack does not join karate YET, watching him be a participate in a sport was fun. Seeing him participate in a normal childhood activity was exciting.  His smile was contagious and he was so happy.  I am looking forward to more days like this!

~ Dawn

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

Re-feeding Trial

Things are going pretty well around here.  Actually, they are going better than they have been in a very long time.  Zack is gaining weight and growing.  That is pretty amazing.  Zack is hungry.  That is new.  Zack is sleeping through the night more often.  That is beyond blissful.  Zack is happy.  That is my boy.

Today we had our regular Monday sodium check at the hospital.  It Is holding steady at around 50 mEq/L which is a good thing.  His output continues to be higher than it should be but is also unpredictable.  It would be nice to get that a little lower, but clearly things are improving.  Even better, Zack has made it almost three months without prolapsing.

Our next step is to do a re-feeding trial with Zack.  Basically, we get to put stool from his bag back into his body through his mucous fistula which leads to his colon.  Then we get to see what happens.  There are more steps involved, but I’ll spare you the nitty-gritty.

That does not sound too awful.  Other than sticking a tube into his body through an opening in his belly and messing with stool, it should not be too bad.  We have done worse things over these past few years.  So why am I soooooooooooooo not looking forward to this?  Seriously, I have no desire to do this.  My anxiety about re-feeding beyond ridiculous and really not at all like me.

I spent some time contemplating this today.  I think that the idea of putting stool back into Zack’s colon again is bringing back memories of how sick he was after his reconnection.  I am dreading waiting to see if he will distend again and if he will have pain again.  I knew things were hard after his surgery, but I did not realize how strong my emotions would be a year and a half later.  Part of me is saying, “Suck it up, Buttercup.”  The other part of me is saying, “Please don’t make us do this!”

Happily, I feel like at least I understand where the emotion is coming from now.  Zack’s doctor told him today that we have to do the test so that we can get closer to being done with all of this.  He is right, of course, and I think I was the one who needed to hear the pep talk.

At our visit to the doctor today, we practiced getting the tube into his belly.  Zack did OK.  Not great, but better than he has done for other procedures.  There were tears.  He tried to resist….well, he did resist…but we finally got it done.  All of the work he does with our social worker on Monday mornings seems to be helping as Angry Badger has not made an appearance lately.  He’s been lurking, but Zack has kept him at bay.  Zack told me later that having the tube in his belly was not too bad, it just scared him.  He also said that his belly hurt with the water inside.  Now that he knows what it feels like he said he could be braver next time.  Maybe I can learn from him?

We also learned that some of Zack’s test results came back.  So far everything is normal.  I was a little disappointed, but not really surprised.  We are still waiting for a few more things to come back…fingers crossed they find something.

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My Little Lego Lover

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I LOVE watching Zack build his Lego creations by himself.

In other news, my running coach, Dave Griffin, writes a column for our local paper the Carroll County Times.  A few weeks ago Dave talked to me about the possibility of writing a piece about how running helps me cope with the stress of having a chronically ill child.  He read most/all of my blog posts (bless him) and knew a lot about Zack and how much I rely on exercise to help me deal with the craziness that is my life at times.  If you are interested you can read it here in the Carroll County Times or here if you are on Facebook.

Until next time….

~ Dawn

 

Zack’s New Plan

Now that we are back home and getting used to being in a routine again, I finally have time to update this site.  Zack was very excited to come home and giggled when he climbed into his bed.  He said he missed his pillows and his cozy sheets.  I felt the same exact way.  To make our first night home even better, Zack slept through the night for the first time in months.  I am pretty sure I heard rejoicing in the heavens…or that just might have been me.

While Zack was in the hospital, the doctors told us that it was time to start looking at some more obscure things.  I guess doctors have a saying that goes something like, “Don’t go looking for zebras.”  Meaning, don’t go looking for a complicated illness when a more common one is most likely.  The attending pediatrician on service this past week is a GI as well.  We have known him since 2013 and have great respect for him.  During rounds he told us that it is time to start treating Zack like an albino zebra. He said that Zack has been “medically brittle” for a long time and on the brink of disaster for months.  It is time to start digging deeper to see if we can come up with some reasons for Zack’s super high output and sodium losses.

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Big brother helping Zack be brave for his PICC dressing change.

Walter Reed and Cincinnati shared testing information so that we do not have to repeat a bunch of tests.  The doctors here came up with some new things they would like to investigate.  One thing they are considering is the possibility that Zack’s intestines are not processing sugars correctly.  This is all new to me, so it is quite possible that I am getting things wrong here.  They want to make sure his pancreas is functioning well and a few other things.  They said many things.  My brain was tired.  I cannot remember it all.  I need a secretary.

One of their plans was to have Zack undergo another endoscopy while he was in the hospital.  Sadly, he had a pretty good cough and anesthesia is never a good idea when you have a cough.  We will schedule that in the next few weeks.  During the scope they will take tissue samples from a variety of places.  I know they will be looking closely at the villi to see how certain enzymes are being processed.  They want to magnify tissue to many times greater than a normal biopsy to see the arrangement of cells.  They also talked about getting something from his bile ducts.  Again, I need a secretary.  If I come back in a few weeks and write something completely different, you can assume I had this wrong…but I am fairly confident at least some of it is correct.

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Zack’s high output also causes him to lose a lot of sodium.  I always knew low sodium (hyponatremia) could be an issue, but I did not realize just how dangerous it can be.  Because Z’s levels have been low for so long, we spent a lot of time in the hospital getting his levels back to normal.  In an effort to keep them normal and prevent such big fluid losses, his doctors have suggested putting him on CeraLyte 70 as his primary form of liquid during the day.  CeraLyte is a oral hydration therapy and comes in several different strengths.  In addition to using CeraLyte 70 for daily hydration, they sent us home with “rescue doses” of CeraLyte 90 to give through his g-tube when his output is really high until we can get him in for labs.  From their literature:  CeraLyte 90 is for severe diarrhea and dehydration–where fluid losses are high–such as in cholera or with short bowel or ileostomy.  Who knew this was a thing?  Why didn’t anyone know about it before?  So many questions…

All of that sounded great when Zack was in the hospital.  And then we came home and actually got the product.  Our home health company could only send the natural flavor at first and let me tell you…it is not something you can sell to a kid as something fun to drink.  While we can give it through his g-tube, Zack likes to drink and if he cannot have anything else all day it isn’t going to work.  Actually, he can have 6 ounces of another liquid, but have you seen ever measured 6 ounces?  I’m pretty sure we will have a mutiny on our hands.  We will see his GI on Monday and talk about the plan and see if we can turn it into an executable one.

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Zack and Aslan.  Quite possibly the most awesome dog in the world.  By the way…Zack is 49″ tall, so that is one big puppy!

The good news is that Zack’s sodium levels were all in the normal range when we left the hospital on Tuesday.  That was the first time that has happened in months.  He feels great and is back in school.  Speaking of school, Zack received his new laptop today and, even better, they trained me on how to use it.  I am pretty sure I needed the training more than Zack.  He is so excited to have his own computer.  He has already mastered the Kurzweil reading program and is enjoying The Lion, The Witch and The Wardrobe.

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Trying out his new laptop.

As you can see, things are getting back to normal around here.  We are so grateful for all of the people who helped us get through the past two weeks.  To all of our awesome neighbors, thank you for helping Jim keep Zack stable and for transporting him to the hospital.  To all of our awesome hospital friends, thank you for taking such good care of Zack and of me.  To our friends and family, thank you for checking on us, visiting us and bringing us food.  You all rock!

Hug your babies!

~ Dawn

The Family Plan

If the forecast calls for a blizzard, you might as well plan on some Penrod drama.  During the height of the Blizzard of ’97 in Colorado Springs, our son, Jake, decided it would be the perfect time to enter the world.  The fact that every blasted thing on base was closed, the streets were impassable and the hospital said not to leave our house made no difference to him.  Happily, everything worked out and Jake was delivered safely.

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Ten days ago as the forecast was predicting the Blizzard of ’16, I thought that I had food poisoning.  After 24 hours of that fun, Jim decided I needed to go to the hospital.  I figured it was either that or death, so I took my chances.  Turns out I had a partial small bowel obstruction.  I assure you, the irony was not lost on me.  The hospital admitted me, Jim made sure I was settled in my room and that I was, in fact, not going to die or need surgery right that minute and hurried home to beat the storm.  Zack requires a lot of maintenance on normal days, we did not want Jake to try and take care of him during a blizzard.

Saturday as I was in my hospital bed realizing that Zack is much stronger and way braver than I, my phone rang.  Jim was calling to ask me the phone number of our friend who happens to be a physician.  Um…. Jim does not worry.  Jim does not freak out.  Jim NEVER calls the doctor.

Turns out Zack was pretty darn sick.  He had a little stomach bug overnight and woke up lethargic and looking pretty awful.  After watching him for a few hours and watching the snow falling faster by the minute, Jim started to realize that Zack needed help.

Our friend, Sarah, soon arrived and took Zack’s vitals and they were not great.  I guess his heart rate was in the 140’s and his systolic pressure was 50.  She called the paramedics to see if it would be possible to get some IV fluids and some Zofran for Zack (thank goodness Z has a PICC line).  Normally, the paramedics would not do that without transporting Z to the hospital, but the blizzard was pretty bad.

When they arrived, the ambulance got stuck in our neighborhood.  We live in a great subdivision and word got out that we needed help and soon many neighbors were digging the ambulance out and sending it on its way.

Sarah stayed with Jim and Zack until she was sure everything was going better.  Jim put Zack to bed and all was well until Zack climbed into bed with him around four in the morning.  Jim said that those were the only steps Zack took during this whole time.  In the morning, it was obvious Zack was not doing better.  Sarah came back down and she and Jim decided that Zack needed to get to the hospital.

Once again, our neighbors came to the rescue.  One of our neighbors has a snow-worthy truck and he volunteered to drive Jim and Zack to the hospital.  That was a big deal because our hospital is over an hour away in good conditions.

Back to my story.  I was trying hard not to get too worried, but Jim had sent me a picture of Zack and I knew he was bad.  The nurses on my floor allowed me to go down to the pediatric ward to see the nurses there.  Because Zack has been in the hospital a lot these last few years, the nurses there are our “hospital family.”  They were awesome and talked to me and helped calm my fears.

Interestingly, one of the surgeons on my team was Zack’s surgeon’s resident for his first two surgeries in 2013.  I told him what was going on and he made sure that the Emergency Department knew Zack was on his way.  He arranged for me to have a hospital pass to leave the floor and meet Zack and Jim when they arrived. He also arranged it so that I could stay with Z in the PICU.  My nurses even came down to the PICU to take my vitals and bloodwork so that I did not have to go back and forth.  I cannot even begin to tell you how amazing that was.

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Getting an X-ray in the Emergency Department.

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Two of Z’s amazing PICU nurses.

Zack was admitted with a very low sodium level and dehydration.  We would later learn that his sodium level was probably not quite as bad as we originally thought.  We could tell that from some later tests, but it was still not great.  While he was in the PICU, he was able to see President Obama land on Marine One at the hospital and thought that was pretty cool. He was soon transferred to the regular pediatric floor and has been there ever since.

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Puppy therapy makes everything better!

I’ll save that story for another day.  I will tell you that he is still in the hospital and doing well.  The doctors are working hard to get his sodium levels and output under control and investigating a few other things.  We anticipate that he will be coming home in the next few days.  I am not able to update this blog there because my computer will not connect to their wifi and the wifi on the pediatric floor stinks.  I promise to update more once we are home again.  Until then…

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Hug your babies!

~ Dawn

Motility Testing

Monday we checked into the hospital for a few days to check Zack’s colonic motility and to see if the doctors could find any abnormal things inside his colon.  We have done the motility test twice before but received different results each time.  Now that Zack’s ileostomy is close to prolapsing again, it is obvious that an ileostomy is not the best option for him. It is time to come up with a better solution.  We need to know if there is any chance his colon would work if reconnected.

Zack was really happy on Monday.  It is rare for him to be admitted while feeling well. He loves visiting with the nurses and staff on the pediatric ward at our hospital and he was is high spirits giving hugs and talking to all of his “friends”.

He lost that happy feeling late Monday night when several attempts to start his IV failed.  When he woke up on Tuesday, the reality of anesthesia clouded his happy countenance. Things went downhill behavior wise from there.  Zack’s incentive (bribe) for good behavior was the Lego City Dirt Bike Transporter.  He was looking forward to building it after his procedure and had grand plans for it.  Sadly, Angry Badger made an appearance.  His Lego set is now in Daddy’s closet until the next procedure when he will have the chance to earn it once again.  Bad behavior just cannot be rewarded no matter how sad that little face looks.  Stand strong parents!

IMG_4647Zack’s warrior headband did little to cheer our cherub.

Jim and I are sad that Zack is so out of control anticipating anesthesia.  We worked a little bit with our Child Life specialist today with some medical puppets and dolls.  Zack was able to place an IV in the puppet’s arm and talk a little about how much he does not like them.  One of our favorite nurses of all time gave us some suggestions from things he had been studying regarding children who have had many medical procedures and become fearful.  We are hopeful we will find something that helps calm his fears because they are getting worse.

Zack headed off for his colonoscopy and colonic catheter placement around noon. Zack’s doctor said the colonoscopy was good with nothing abnormal found.  The catheter or tube contained a lot of sensors that measured the pressure or contractions in his colon at rest and with meals and medical stimulation.  It was clipped (somehow) to the beginning of his large intestine and then brought out of his body through his bottom and taped to his leg.  The procedure did not take long and he was back in the PACU after about an hour and a half.  It took a long time for him to wake up from the anesthesia, but there were no complications this time and everything went according to plan.  I like that.  Zack was not able to eat or drink for the rest of the day and had to stay in bed.  That was not a problem as he did not really want to move.

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Zack, Jim and one of our nurses with matching tattoos.  Zack also put one on his belly as a surprise for his doctor to find.

This morning, the colonic manometry started when Zack woke up.  Zack’s doctor said this gave them a baseline measurement.  After about thirty minutes, he was able to eat pancakes and drink!  He downed an entire 32 ounce G2 Gatorade in a matter of minutes and was a happy, happy child.  Once he finished eating, the machine continued recording until his doctor returned to give him a medication through the tube to stimulate his intestinal nerves.  This medication worked!  We were able to see propagating waves on the monitor.  Propagating waves are a good thing.  In January, there were none, zero, nada.

Now the never ending questions remain.  First, why does he have decent motility when he has an ileostomy and his colon is at rest?  Did his septic symptoms skew the test last time?  Does his colon stop working properly when it contains stool?  Was the colon so dilated that the sensors couldn’t sense anything?  Second, what are the least invasive ways to get answers?  One idea is to give Zack a cecostomy.  This would allow us to flush Zack’s colon from above, but can only work if we can figure out why nothing comes out of his bottom. Can we try re-feeding his colon (it’s a real thing…adding ostomy output into cecostomy to see how colon reacts to stool) before reconnecting him again?  You get the idea.  Lots of questions.  Unfortunately, we may not have much time to figure this out.

Today, however, we are happy to be home.  Zack was discharged at 12:30 which gave us plenty of time to play.  It was a beautiful, sunny day.  Zack was thrilled to be outside even if all of the kids in the neighborhood were gone.

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Daddy getting the IV tape off.

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Happy to be home!

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Frisbee with Dad.

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Almost caught it!

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Even had time for a bike ride!

We are looking forward to enjoying the last four days of summer vacation.  We are hoping to have a little pool time, a barbecue with friends and lots of play time before then.  We are pretty excited that we have good news to report.  Hoping to continue that trend for a while!

Tonight we are excited to sleep in our own beds, no machines, no noises, no lights.  It is very exciting!

~ Dawn

The Return of the Stoma

I wrote my last post the day of Zack’s hospitalization before everything went kerflooey.  I had no idea what was about to happen….and now, the rest of the story.

We knew it was too good to last.  A fun summer full of tennis, swimming, running around like crazy, jumping on trampolines, riding bikes and water balloon fights.  We packed a lot into the three weeks after school ended.  I am so glad that Jim and I had been trying to let Zack do as many fun things as possible for as long as he could because last Monday all that changed.

Our day started out like any ordinary summer day.  Tennis lessons in the morning, playing outside with friends and getting new library books.  Sigh.  That afternoon, Zack wanted to ride his bike around the cul-de-sac.  I was happy about that because my neighbors were outside and it is always fun to chat with grown-ups.  Soon after getting on his bike Zack came back and started crying in pain.  Sure enough, his stoma was prolapsing.

Prolapsing stomas do not scare me.  We are used to them around here.  Zack crying in pain DOES scare me.  I carried him inside and got a good look at his stoma which was unusually bloody and painful.  Soon it started to look a bit purplish, which in stoma world is not a good thing.  I texted his GI doctor and tried not to let Zack know I was beginning to get worried.  Then Zack said two dreaded things.  First, I feel sick. Second, Take me to 3 West (the pediatric ward at our hospital).

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I started packing a bag for Zack and for me and Jim walked in the door.  He quickly agreed that we needed to head to the hospital and off we went.  Our GI doctor called ahead to the emergency room to let them know we were coming.  I was thankful for that because Zack was super nauseous and could not walk by then.  Soon after arriving, our surgeon came in and explained that he was going to try to reduce Zack’s stoma in the trauma room while Z was under conscious sedation.  We were able to be in the room with him the whole time.  Despite his surgeon’s best efforts, Zack’s stoma was not cooperating and he told us that the next step was to try to reduce it in the OR and if that failed he would need surgery.  He felt that surgery was likely.  I told him I was hopeful the reduction would work.

I was wrong.  After a valiant effort, Zack’s surgeon came to see us in the waiting room around 12:30 to give us the bad news.  Zack needed surgery and he felt he needed to open his abdomen again because he was worried about damage to the intestines and wanted to make sure they were OK.  Three hours later, the surgery was done.  Zack had to have 6″ of his intestines removed and a new ileostomy placed.  The surgeon was glad he opened Zack’s belly because he discovered a hole in Zack’s intestines that he would have missed otherwise.

Zack went to the PICU to recover and for pain control.  Until recently, Zack’s pattern with surgery is to have pretty intense pain afterward.  We have had to stay in the hospital longer than expected numerous times.  This time Zack was in the PICU for a day and a half and then moved to the ward.  He had pain, of course, but it was well-managed with a PCA of Dilaudid and Toradol.  Our doctor told us he would need to remain in the hospital to finish a 72 hour course of IV antibiotics because of his messy abdomen.

For Zack, going to the ward is a happy thing.  He knows all of the nurses and medics and most importantly, feels safe and loved there.  Once he was all tucked into his new bed, our social worker stopped by to see if she could cheer Zack.  Before we knew it, there was a shaving cream fiesta happening.  They put shaving cream on the window and finger painted.  Zack put shaving cream on our social worker, medic and several nurses.  Even our PICU nurses got in on the action.  It was really fun!  Zack was still pretty darn tired, so he sat in a chair unable to really lift his head.  Here are some pictures:

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Sometimes being in the hospital can be fun(ish)!

The next few days were spent healing and getting stronger.  Zack knows the hospital game now and tends to say he feels fine so that he can get off his pain button and out of the hospital.  Everyone knows he is always “awesome”.  This time he tried to fake out the nurses with his pain number.  You know, how would you rate your pain 1-10?  He told one of the nurses his pain was zero.  I did not hear what he said, so I asked him once the nurse left.  Zack told me he told our nurse his pain was zero, but “for you mom, the pain is really a two.”  Stinker.

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So now what?  No. Really.  Now what?  Someone please tell us what to do.

We know that Zack’s body does not have any internal scarring.  After eight surgeries this is kind of crazy.  His surgeon says Zack’s body is magic.  We know that his body does not like ileostomies.  This is sad because when they work, he feels SO much better.  When they are not working, he feels so incredibly bad.  It is not normal for a person to prolapse this much.  What is the reason?  Nobody knows.

Do we do more testing on his colon to confirm if it works or not?  Do we check into the obstruction at the anastomosis again?  Do we throw in the towel and say take the colon out?  Will the small intestine, which keeps prolapsing as an ileostomy, man up and work as a colon or will it continue to be a pain in Zack’s…well…ass. Nobody knows.

If we decide to take his colon out and do a pull-through operation, it is a pretty big deal.  There are lots of things to consider and it does not magically make him better.  There is a long recovery period with a high risk of complications. So, again I ask, what do we do?

The time has come for Jim and me to make some tough decisions.  We do not have much time until Zack prolapses again and we do not want to have to put him through another emergency surgery.  The plan, for now, is to conference call with our GI and surgeon here and our GI and surgeon in Cincinnati and talk about all of our options.

In the meantime, we are in the middle of stoma hell again.  Zack’s new ileostomy is much larger than the others.  It is also closer to his staple line.  This make it hard to get a good seal on his bag, so it keeps leaking.  Yesterday and today we have gone through 5 bag changes per day.  His skin is raw and bloody.  Zack is convinced his staples are going to rip out of his tummy.  He is pretty mad that it hurts so much.  Today we saw a show with a little girl complaining that she scraped her knee and needed a Bandaid.  Zack said, “Oh, COME ON! She’s complaining because she scraped her knee?”  We may have to work on empathy…

That pretty much summarizes our last week.  Even though it was stinky, we were again blessed by everyone who helped Zack.  Our surgeon and his team, our GI doctor, Zack’s nurses and staff and our social worker.  If you have to be sick, it is nice to be in a place that truly wants the best for your child.

I leave you with a shout out to my family.  This Tuesday is our 25th anniversary.  They arranged for Jim and me to stay at a nice hotel near their house for two nights while they kept an eye on Zack.  We were exhausted from the hospital stay and considered backing out, but decided to give it a try.  Even though we had to go and take care of Zack’s wafer quite a few times, we were able to sleep for 10 hours straight the first night, go out for a nice dinner and spend some time without drama.  We did sign up for sickness and health after all.  Hopefully more healthy days will be coming our way soon.  So thanks family.  You rock!

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Hug your babies!

~ Dawn