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

Sickness, Graduation, Fun and Waiting

What a whirlwind this past week has been! Let me start at the beginning.

One week ago, Zachary’s ostomy went crazy in the output department.  A normal ileostomy should produce between 300-500 ml of output a day.  Zack has never fit into that category.  His output usually averages about 1,000 ml out per day.  Last Sunday, for no apparent reason, Zack’s ileostomy had 2,650 ml out and our boy was illin’…..a word meaning feeling pretty darn sick.  Previous to this, Zack’s highest recorded output was 2,300 ml while he was in the PICU.

Zachary was so sick that HE asked to be taken to the hospital for an IV.  Yeah.  He never asks to go to the hospital and asking for an IV?  Well, that has only happened one time before three years ago when he had a small bowel obstruction.  Obviously, I wanted to take him to the hospital right away.  Jim, being the man of reason in this situation, thought we should wait a bit and try to manage at home.  I agreed, with the stipulation that we text his doctor.  His doctor advised us to have a low threshold for taking him in, to bring him in for labs in the morning if we decided not to come in, and gave us instructions on how to rescue dose Zack with CeraLyte.

This is the part of my story where I sing the praises of Zack’s g-tube. His g-tube is a permanent tube that goes directly into his stomach and allows us to administer medications as well as formula.  The idea of a permanent feeding tube in Zack’s stomach took some getting used to, but now I cannot imagine his life without it.  I actually wish we would have gotten one sooner.  This little invention allows us to manage a lot of things at home that once would have landed Zack in the hospital. It is a wonderful invention and I am so very thankful that he has one.

Back to my story….later that evening our guy said that he really thought he should go to the hospital. Again, I was all for that.  Jim thought we should ask our friend, Sarah, to come take a look at Zack and take his vitals first.  His heart rate was elevated, but his blood pressure was OK-ish.   Sarah advised that if we wanted to stay home we would need to check on him every few hours over night.  Jim really did not want to go to the hospital and have Zack admitted when he was OK-ish, so we stayed home and monitored Zack.

As much as I hate to admit it, that was probably the right call.  Zack was a bit more lively in the morning, but still not great.  Zachary’s lab work that morning showed that he was low in sodium and chloride and had signs of dehydration.  All of that WITH his g-tube.  Happily, his output slowed down and his doctor talked me off the ledge.  I was really not comfortable with how sick Zack had been the day before.  We were getting ready to head to Texas and I was worried about getting his sodium levels back up before our flight.  His doctor said that while IV fluids would bring his levels up in a much more controlled way (and quicker), being that his output was back to a reasonable level we could bring his levels back up at home with his CeraLyte.

Jim and I believed that Zack had a 24 hour bug and that he was fine.  We flew to Texas on Thursday and Zack was a dream on the plane.  He sat quietly and did not fidget.  That should have been our first clue that something was amiss.  We arrived in Houston to spend the night with family.  Zack spent the afternoon playing with his cousins and having a terrific time.  Overnight he developed a fever and woke burning up.  But he had output and we knew his belly was OK and we needed to get to Austin for Drew’s graduation at The University of Texas.

Texas cousins.  We call them M3 – Mason, McCain and Morgan.

When we arrived in Austin, our boy was still burning up.  Not only that, his appetite was non-existent, his head hurt and his output was crazy.  When we are at home, Jim and I measure Zack’s output with a urinal.  I refuse to travel by plane with that nasty thing and we have gotten pretty good at estimating.  We knew his output was high, but we were prepared with the appropriate amount of CeraLyte.  Zack continued to have a pretty high fever for a bit over 48 hours.

The morning of graduation Zack woke moaning and really feeling bad.  Jim and I were concerned that we might need to take him in to be seen.  The second time in one week!  We dosed him with Motrin, had Jim’s brother and wife sit with him while we went to the Master’s Convocation in the morning (thanks David and Sylvia) and started looking into which hospitals were close to us.  We made a plan for what we were going to do when we got back to the hotel and who would miss the commencement ceremony that evening.

As luck would have it, one of Zack’s nurses from Walter Reed lives in Austin.  We were able to talk to him about what was happening with Zack and he told us which hospital would be best for Zack.  When we returned to the hotel, Zack was a bit perkier.  He still had a good fever, still was not feeling great, but no longer moaning.  His fever continued through the day and he did a lot of resting on me.  However, we decided with some Motrin and snuggles that we would chance graduation.  It was outdoors and we would not be infecting anyone with his germs.  Zack’s output was crazy again, but we continued with lots of CeraLyte and hoped things would calm down.

Can you see Zack under there?  He was freezing and had a headache and generally just felt bad.  This is how he spent most of graduation day.

On Sunday morning, Zack’s output was still high, but his fever was gone.  We started feeling much better about the situation.  We had a fun lunch visiting with Drew and Lindsey and our dear friend, Chris.  Chris was a nurse at Walter Reed and one of the best we know.  He took care of Zack at his sickest and we are forever grateful.  We were so excited to see him!  Zack had not eaten that day, but we knew he had formula overnight and were not too concerned.

Here he is at lunch with Chris.  He looks great, right?  Perfectly healthy.  Who knew….

After lunch, Zack wanted to be carried.  We had put a new wafer on before lunch and there was nothing in his bag.  Not one little drop. He said his belly was hurting.  All things which tell us things are not going well.  We went back to Drew’s school and walked around.  Every time we tried to have Zack walk, he sat down on the ground and said his belly hurt.  Still no output.  Jim and I once again started to be concerned.  How did this child go from so much output to absolutely nothing?  Was he obstructed?  We really think he was.  His behavior fit perfectly with an obstruction.  It took over 6 hours for his output to start back up.  Once it did, the flood gates opened and Zack was really hungry and his energy returned.

Yesterday it was time to fly back home.  Zack had a normal amount of output overnight.  His fever was gone.  However, he woke up congested and with bloodshot eyes and a headache.  Once we got one the plane, Zack’s output once again stopped.  Once again, in the late afternoon Zack perked up.  His output started back up and he was ready to go.  Until dinner..when he said he did not want to drink too much because his brain was telling him that his belly hurt.

We got home, had a shower, got into our own beds and Zack said he felt better.  He once again had a normal(ish) night.  There was a little output.  We were happy.  When he got up he seemed OK, so we decided to send him to school.  We knew he did not eat his normal breakfast.  He told us he was full.  However, he ran to the bus and told everyone he felt awesome.  And then the phone rang….it was the school nurse.  Zack had a belly ache and was asking for Tylenol.  She gave that to him and sent him on his way.  The phone rang again about thirty minutes later.  Zack was prolapsing a bit and still did not feel well and was acting unwell and even missed recess.  I brought him home and here we sit.

Jim and I believe that last Sunday was the beginning of whatever crazy is going on now.  When Zack gets sick, his ileostomy has higher than normal output. What has caused him not to have output these past few days is still a mystery.  It has happened before and we have attributed it to positional obstruction. It used to happen a lot during the school day.  But this is a bit different in that.  On Saturday, Zack was walking around one moment and then the next he was very unwell.  We are hoping that it is still related to his virus and not a physical obstruction.  There is nothing we can do about it at the moment besides wait and see.  If you know me at all, you know that this makes me crazier than normal.

The good news is that we are home and close to our normal doctors.  If anything happens, we feel much more comfortable with the care available here than in Texas where nobody knows his story.  Zack has said he will let me know if he needs to go to the hospital and Jim and I are on alert.  Still, the only thing we can really do is wait and see…..

As I wrap up this post, I want to share some pictures of a big event in the life of our family.  Drew graduated on Saturday with a Master of Aerospace Engineering degree from the University of Texas at Austin.  Even though Zack was sick, we were still able to enjoy the weekend celebrating Drew with family and friends.  Drew has worked extremely hard for many years pursuing his dream.  Jim and I are so proud of him and very thankful to everyone who has had a part in mentoring, teaching and loving our son.  I am also grateful that we were able learn about the great history behind the Longhorn traditions.  We have never seen such spectacular graduation ceremony before.  It was a mix of a parade, a concert and Disney fireworks and something I will always remember….and I finally learned the words to “The Eyes of Texas” and how to properly “Hook ‘Em!”

Before Commencement

Drew and his girlfriend, Lindsey.  Aren’t they cute?

After the Masters Convocation in the morning.

Last picture.  I promise.  This makes me happy because it was the moment we first saw Drew and Lindsey.  I think it captures how happy Drew was/is to be D.O.N.E. with school…for now…

Hug your babies!

~ Dawn

A Summer of Fun!

It’s official.  We are having a great summer!  Finally!  We have been having so much fun doing normal summer things, that I have not had time to update.  Now that is a problem I can handle.  I do not want to sound greedy, but I hope to have the same problem next summer and every other summer for years to come.

Remember Zack’s summer bucket list?  Learn to play tennis?  Zack worked hard all summer and can now actually hit the ball most of the time.  Serving is still in the infancy stage, but it involves multiple steps and movements and that has always been a challenge for Zack. This time I actually have some pictures!

IMG_6044Working on his forehand.

Zack and his amazing coach!  Mr. Brecker is our girls high school tennis coach. During the summer, he runs a great tennis program for kids in our area. He has the amazing ability to give meaningful praise to every child.  I believe this is the main reason Zack loves tennis.  He believes he can do it even when it is hard and his body doesn’t cooperate like the other kids because Mr. Brecker believes in him.  You know I love that!

IMG_6072End of season award for working so hard on his serve.  He loves his new “Sport Glasses.”

Zack FINALLY began karate a few weeks ago.  We had been trying to get started for a few months, but had a few obstacles in our way.  Once we got those resolved, Zack was thrilled.  The most exciting part for him?  His uniform.  He has been wanting to be in a sport so he could wear a real uniform.  It is always great when a dream is realized.  Especially when you are nine!

IMG_1806IMG_1808Another dream our boy had was to learn to climb a tree.  We found a tree with a low branch.  He got up on it and felt pretty cool.  He thinks we need a tree house in our yard now.  Too bad our trees are still too little….or maybe that is a good thing!

IMG_6076We are leaving soon for our first vacation in three years.  You’ve heard me say that a few times now, but I keep on repeating it.  Three years, people!  We keep on pinching ourselves.  We are thrilled Zack is finally well enough to do this.

While things are infinitely better than they have been, we are still watching the normal bothersome issues.  Zack’s sodium levels continue to be a pain.  They are low again this week, but that is most likely because his output was crazy this week.  We are so happy that Zack’s doctor’s discovered CeraLyte.  I believe that CeraLyte has helped keep Zack out of the hospital these past few months.  We seem to be able to manage his sodium even though it is still low.  Zack’s doctor frequently checks his labs to make sure he is safe.  We still do not know why his stoma loses so much fluid daily.  It would be nice to figure that out one day.

We are still dealing with his pesky stoma swelling and constricting his output.  Things are still manageable, so I am trying to relax about the whole thing.  Note I said trying.  I tend to get freaked out when hours go by without output and when his stomach is no longer soft.  It is really hard for me to imagine this will not get worse, but so far things are resolving with rest.

I guess with all chronic illnesses, finding ways to manage things is key.  I feel like that is what we are doing now.  I much prefer managing things to going from one crisis to another.  Score one for Team Penrod.  It’s about time.

Now, about that vacation…..

Hug your babies!

~ Dawn

 

 

Zack’s Summer Bucket List

Time for summer vacation with a HEALTHY boy!  Yes, I wrote that.  No, I am not worried about jinxing Zack.  I mean, we still have to track his sodium every other week, but that is a piece of cake.

This is the first summer we have had in recent history with the very real possibility of making plans and having them actually happen!  I had Zack make a list of things he would like to do over the next few months.  I’ll share them with you in a bit, but first an update on Zack’s medical stuff.

Zack’s sodium level continues to be detectable with an odd off week every now and then.  His stoma is behaving, mostly…We are watching a rather new development.  While Zack is not prolapsing, his stoma is swelling with exertion and is painful again.  Zack has begun assuming his pain position when this happens and also asks for Motrin more regularly.  When his stoma swells, his output slows way down.  Happily, his output starts back up again once he actually relaxes.  I know I always say his output is too high and now I am complaining about it slowing down.  The problem is that his output is artificially slowing.  It is slowing because his stoma is swollen and blocking the flow, not because it is actually doing what we need it to do.  Jim and I are not overly concerned yet, but we are definitely keeping an eye on the situation.

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The famous pain pose.

In addition to Zack’s medical update, I have a school update.  Zack had a big neuropsychology appointment at the Kennedy Krieger Institute today.  Zack underwent 5 hours of testing, and we received some interesting news.  Zack’s cognitive ability is significantly higher than his performance in school.  The doctor (PhD, not MD) believes that his cognitive ability is strong enough to be able to graduate from high school, but he will continue to require special attention.  We also know he’s not crazy, we had him tested.  I do not have the official written report yet, just what Jim and I wrote down and our memory of what was said.  Because of that, I am afraid to write more about it as I might get the terminology wrong or say something incorrectly.  You will just have to stay tuned for a more precise update later.

Now, about that summer list.  I love my Zack.  His list makes me giggle.  One week into summer and he has already accomplished almost everything on his list.  I might have to help him think of more fun things to do.  I keep saying this is the summer of Zack!

  1. Get socks without holes.  Um, child, if you put your shoes on before going outside as directed, your socks would last a LOT longer.  Just sayin’.  The boy now has many pairs of socks without holes.
  2. IMG_1621Learn to swim and go to Aunt Becky’s to swim lots of times. Technically we are still working on this, but he is in swim lessons so I count that as being done.  All he has left is to learn to breathe.  You know, the most important part of being able to be in the pool without your parents.
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  3. Play tennis.  Tennis lessons began last week and Zack actually hit the ball several times –  in the same lesson.  That is a huge improvement from last year.  AND he actually paid attention to his coach during listening time.  Score!  Sadly, no pictures.
  4. Go bowling.  We learned that Zack is a bit OCD about color coordinating bowling balls on the racks.  Who knew?IMG_5915
  5. Play WiiU.  Bribery for good behavior wins again here.  Zack got a new game for behaving exceptionally well today during his hours long testing.  That is pretty hard to do when you have a pretty good case of ADHD and your meds wear off.
  6. Go to the library.  Zack signed up for the summer reading program and is eagerly reading to earn tickets for raffle items at our library.  Bribery really works for this kid.
  7. Get a puppy.  Well….now here is one that we have not yet accomplished.  BUT since Zack is doing so well medically, we are actually in the process of figuring out the puppy situation for either the fall or spring.

There you have it folks.  I am enjoying posting happy things.  I would really like to make that a habit.  Are you listening stoma?  I am enjoying having my boys home for the summer.  Most of all, I am enjoying having a healthy Zack and hoping it continues!

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Hug 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

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

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