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

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?

FullSizeRender(1)

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

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas!

IMG_5213

~ Dawn

 

Surgery #9

Today was a long day.  Zack had to check-in this morning at 6:30 for surgery at 8;00.  I am very happy to say Zack was very brave and very strong and very cooperative.  It is a big deal and we are very proud of him.

When we met with Zack’s surgeon this morning she told us that she had been thinking about her plan and wanted to make a few changes.  I will tell you about a few, but I want to wait to tell you about all of them to see how things go over the next few days.

Zack’s surgery was called a rectosigmoidectomy transanal approach.  The name is a little misleading (to me) because he already had his sigmoid colon removed.  The doctor decided instead of opening Zack’s belly, she was going to go in through his bottom.  Doesn’t that sound fun?  We were told that going through the bottom would be less invasive, less painful and that he would recover faster.

During the surgery, Zack’s old anastomosis was revised.  The surgeon said his staples were scattered all over the place and that she could see why he was complaining that they hurt.  We do not know why the staples did not hold like they were supposed to, but she spent a long time removing them.  We even got some to keep as a souvenir.  Some people collect coins, I guess we collect intestinal staples.  Zack’s surgeon took out about five inches of his colon and then stitched the two ends together to form his new anastomosis.

Zack’s stoma had started prolapsing again, so the plan was to revise it and tack it down during this surgery.  When Z’s surgeon got in there she found that it was still partially tacked down and had a bit of an odd twist.  Given those two things, she decided that it was best just to leave it alone.  She then made Zack’s mucous fistula at the bottom of his scar line.  A mucous fistula is an opening in his belly where part of his colon is brought up to the surface so we can access it when needed.  That was interesting to me because his previous mucous fistulas were next to his ileostomy and pouched in his bag.  We will see how this one works.

Zack’s g-tube was changed out and his granulation tissue was removed again.  His new button is a lower profile one that Z’s surgeon prefers more than his Mic-Key button. At the very end of the surgery, Zack had a PICC line placed.  He will need to have his blood drawn weekly for a bit and his veins are starting to revolt.  I do not know how long he will have it, possibly until his next surgery.

We met with the surgeon when she was done in the OR and discussed many things.  I will write about them another day when my eyeballs are not stinging and Zack feels better.  We have a tentative plan that I actually understand and that Jim and I are comfortable with.

Some friends were waiting with us in the waiting room and could tell I was getting anxious.  I know just how long it usually takes from when we meet with the surgeon until we are called back to see Zack.  Today it was taking an exceptionally long time and making me a bit nervous.  It turns out that they were having a hard time controlling Zack’s pain.  He had Dilaudid, Morphine, Valium and Robaxin and was still not comfortable.  He had/has a PCA and was pushing it every few minutes.  The pain team finally came and worked their magic, but it still took about five hours for Zack to start feeling a bit better.  He is now sleeping well. We will see how he does in a few minutes when I try to sleep.

There you have it.  That is all I have.  I am sure that when I read this tomorrow I will wish I had spent more time thinking about what I wrote, but my eyelids are done.  I leave you tonight with a picture of Zack’s teachers.  They all got together to send Zack some love.  It made me smile!

SuperZack

Oh!  One last thing…for those of you who wanted the link to ecards for Zack:

http://www.cincinnatichildrens.org/patients/resources/ecard/

Zack is in location A, the Burnet Campus, room 439.

Hug your babies!

~ Dawn

Manometry Day

It has been a crazy few days for Zack.  Yesterday was so busy and LONG that I did not have a chance to write an update.  Now I have so much to say that I am pretty sure I’ll forget lots of important things and equally sure I’ll ramble.  Forgive me, please.

Yesterday began bright and early with manometry testing. All was fine until the introduction of medication.  After about an hour of testing, the manometry team put an antibiotic (erythromycin) into his IV which caused him to become flushed and feel sick.  The medication is used to stimulate the small bowel.  After another hour, Zack was allowed to eat pancakes and boy was he a happy child!  He ate them so fast he gave himself a stomach ache, but I think he thought it was worth it.

The test continued for another hour or so and then the nurse added another medication to Zack’s IV.  I do not remember the name of it, but Zack felt a lot of discomfort.  We were told it was also for the small bowel.  I am not sure if the first drug did not produce the waves they were looking for or if it is standard procedure.  Zack has never had it before.

At long last it was time for the large intestine medication to be given.  Zack’s colon did not respond how they had hoped, so they administered another dose. The medication causes lots of cramping.  Zack was not a happy camper.

Sadly, during the administration of this last dose, Zachary’s stoma prolapsed.  We knew it was only a matter of time, but really?  At least we were in the hospital.  The strange part was that Zack was on his back in bed.  It was not as large as some of his other prolapses, but it would not reduce on its own.  Seven hours later and several attempts at reducing it by the surgery Fellow, that pesky stoma finally went back in…..and then there was quite an outpouring of “stuff” from the stoma. Try not to think too much about that.  Let’s just say that our nurse last night deserves a serious raise.

We also met with the GI team on service to discuss a number of tests they wanted to perform.  They checked Zack for viruses, parasites, cystic fibrosis, malabsorption issues, nutritional status and a number of other blood work type things.  Because some of the things they were testing for were potentially contagious, Zack was placed in isolation.  That was fine yesterday when he felt bad, but today it was hard as Z felt pretty well and wanted to go to the playroom.  It is the highlight of the hospital after all.

Because Zack has had “Angry Badger” issues, we met with a pediatric psychologist to discuss the situation.  Her assessment was that Zack is suffering from medical trauma and could benefit from counseling.  That was fun to hear, but not really surprising.  One good thing that came out of her evaluation is that he is “a well adjusted child in all other areas” and only has anxiety regarding medical procedures.  It was actually one of the best parts for me of being here.  She gave us some great tips and we started trying to incorporate them right away.

At five o’clock this morning Zack needed to have labs drawn. His IV was not drawing back so he had to have a needle stick.  Five o’clock in the morning and needles are usually a recipe for disaster, but I am happy to say that Zack held it together and did a great job.  He was still scared, but was able to work through it with breathing and distraction and talking and a wee bit of crying.  He did so well that his nurse gave him a Lego police truck.  Talk about positive reinforcement!  So positive in fact that he has been awake ever since….

IMG_4915

Around lunch time, Zack’s GI here in Cincinnati came in to discuss the manometry results.  We learned that Zack’s colon had no propogating waves at all until right above the anastomosis site.  That means his colon does not function from the beginning of the large intestine until right above where he was reconnected. It begins to function above the anastomosis for a very little bit and then stops again until it reaches his rectum which functions well.

We also learned that his high output is a result of secretory diarrhea.  I am not sure if I completely understand this yet, but for some reason his intestines secrete too much fluid.  The doctors are trying to get a handle on this because it needs to be under control before we do anything else.  That meant more blood work, a change in formula and antibiotics. Because his IV would not draw blood today a new IV had to be placed.  Despite his great effort this morning, this new IV was just too much for him to handle today. The Vascular Access Team decided that since his IV still worked in his left arm they would leave it in place and put a new one in his right arm to be used for blood draws.  They were wonderful in granting Zack’s request to leave his hands free for playing Wii.  His tests for infectious things came back negative, so he was finally allowed to head back to the playroom.  Behold the two IV wonder:

IMG_4919

The last person we met with today was the dietician.  We were thrilled to learn that Zack is now in the 30th percentile for weight!  Everyone seemed pleased overall with his growth and would like to see him bulk up even more before his next surgery….and there will be more surgery.

We expect that Zack will be discharged tomorrow.  Zack is counting on it, so I hope nothing else happens.  The GI on service this week is not super comfortable with Zack leaving with his prolapsing issues, but Jim and I feel like we have done this for so long we can handle it.  The only hesitation I have is how long it took Zack’s stoma to go back in last night, but if that were to happen here or in Maryland we would do the same things and home is always the better place to be.

We believe Zack will be having a colectomy (removing most of his colon) in the next few weeks.  Zack’s surgeon is currently in China so we have not made any concrete decisions regarding which surgery to perform. We do know that she is planning to add Zack to her schedule the week after Thanksgiving.  That is really soon!

Whew.  I hope I covered everything.  Time is almost up here in the playroom.  That is my signal to get off this thing and say good night.  Fingers crossed that we can bust out of here tomorrow.

Hug your babies!

~ 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).

IMG_4406

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:

IMG_4486IMG_4488IMG_4489

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.

IMG_4448

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!

photo (5)

Hug your babies!

~ Dawn

 

Summer Life – A New Hope (Channeling Star Wars)

This is a post I wrote last week, but had not yet posted.  A lot has happened since then, so I have decided to make this a two-part post.  There is a lot to say….

After two summers of not feeling well, this summer is off to a fantastic start.  Jim and I are determined that this child will play, swim and run around like a crazy man as much as he wants for as long as he is able.

We found this really cool belt that covers Zack’s ileostomy bag and keeps it in place and fairly dry in the pool.  For the past two summers, Z was only able to be in the pool for about 30 minutes before his wafer started to loosen and he had to get out.  Nobody wants intestine juice in their pool.  One of Zack’s goals for the summer was to finally learn to swim and he is one determined fella.  Jim and I cannot believe that one of our offspring is eight years old and still not swimming.  We taught swim lessons and coached swimming for years.  Our other guys swam by the age of four. Intestinal issues have been messing with our fun.

Enter the Stealth Belt.
IMG_4299

Zack is showing off his muscles and his belt for you.  He loves it.  As an added bonus, we figured out that if we leave it on after swimming his wafer will re-adhere to his skin.  That was a happy, accidental discovery!  Zack wants to try to wear it to school in the fall so that the other kids do not see his bag.

Zack was also having trouble this year with his g-tube itching.  His granulation tissue is oozy and he is always messing around with it.  This has been a pretty big distraction for Zack in school and in life.  We found a company that makes covers to go around g-tubes that absorb the ooze.  Even better, they make them in Super Hero designs AND they made some super cute Batman covers just for Z.  He wanted to take a picture of one for you. The company, AdoraBelly Design, was founded by a mom of a child with a g-tube and we love our tubies!  I know this sounds like a commercial, but it really is not.  We just really like them.

IMG_4387

Zack has also been having fun learning to play tennis.  He has actually even hit the ball a few times.  His coach is amazing and super patient.  All things physical are pretty tough for Zack and take a lot of time to learn.  Zack is excited to go to lessons each day and we even bought a big bag of balls to practice with…I just wish they were easier to retrieve.  You can never get too much exercise?

And now, because you knew all of this was too good to be true, back to the other part of our life…prolapsing.  Sadly, Zack has begun to prolapse again.  The first time it happened we all cried.  We thought we were doomed to daily prolapses and suck.  Happily, Zack made it two weeks before he prolapsed again.  This time was pretty painful

FullSizeRender (2)

The next time it happened three times in a week.  We realized that we were back on our path to daily prolapsing.  We tried to get Zack to rest when it started to protrude, but a guy can’t stay on his back all day long.  There are things to do!  That is where we are today.  Holding our breath that Zack will stay healthy just as long as possible, but realizing our time is short.  We are crossing our fingers that Zack will get to play for many more weeks.  We can dream…..

Our week….

Time for a weekly update.  Things are good.  The end.

IMG_3905

If only things were that simple.  Things are indeed going fairly well.  But, as usual, it’s complicated.

Zack’s wound opened up again this week.  We sent a photo to our ostomy nurses and they wanted us to bring Zack in to be evaluated.  We made a new plan, much like the old plan and will go back in next week to see how things look.  Our surgeon had warned us that this area was weak and that we might have trouble with it.  I believed him, but not really.  Guess I’ll listen more to the man.  He obviously has a clue.

For the past week, Zack’s stoma has been prolapsing a little bit.  A prolapsing stoma sends shivers of fear through my body.  Seriously.  Happily, so far, he is only prolapsing about 2 1/2″.  My anxiety level has been elevated and I keep waiting for more…

Because we have traveled this road before, I wanted to be proactive in our approach.  I did not want to wait for an emergency to happen and then have to make hard decisions under pressure. Jim and I decided it would be a good idea to talk to Zack’s GI doctor now before we are in that position and formulate a game plan.

We are smack in the middle of that process now.  We have an appointment next week to go over some new information and to see what comes next.  I feel some more testing in our future.  Of utmost importance will be formulating a new plan for when Zack needs anesthesia next.  We do not want a repeat of last week!

Today we heard from the teacher Zack will have for summer school.  Happily, summer school is only an hour a day, three times a week in July.  So, though technically during the summer, it will not take the entire summer break away from Zack.  I am thankful Zack will be going as he is still struggling a bit in school.

Next week we also up his Ritalin dose to see if it will help Zack focus better in the afternoon.  Since beginning Ritalin again he has lost some of his new found weight.  Have I mentioned before how much I love Zack’s new g-tube?  I love that we can give him more calories when he needs them.  I love that he gets a more balanced diet this way than he would ever eat on his own.  While I agree real food would be best, this is a kid who just does not eat and Ritalin does not help.  It is nice to have one less thing to worry about.

Personally, this week was eye-opening for me.  I realized that I have been living in fear for far too long.  Fear and worry, about Zack and our other boys.  Fear about what the next thing will be for Zack.  Fear of more surgery.  Fear of more prolapsing.  Fear of more pain.  Fear of more fear.  It is pretty ridiculous.  Even though my faith is strong, sometimes my emotions take over and overwhelm me.  I do NOT like that.  I have resolved to change this and am working hard to make that happen.

Surprisingly, my new favorite song is by Nickleback.  I have never really been a big fan, but their song, “What Are You Waiting For?” is the current cool down song in my Body Pump class at the Y.  I have been listening to it for quite a few weeks now and it has grown on me.

It goes along with my current favorite Bible verse:  “Have I not commanded, be strong and courageous. Do not be afraid or discouraged; for the LORD your God is with you where ever you go.”  Joshua 1:9  Fear has no place in my life.  It is just bringing me down, so time to kick it out!  Or, maybe send in my favorite Jedi to wipe it out.

IMG_3901

Hug your babies!

~ Dawn

Surgery Time….Again

Tomorrow marks one week since Zack was discharged from Johns Hopkins after his crazy stoma prolapse incident.  Yes, let’s call it an incident.  Since then he has been doing really, really well.

zwendys

Thumbs up for getting food in his belly after school today…or maybe just into his cheeks.

Even so, the time has come to do something about this stubborn stoma.  Zack cannot continue to go on like this and honestly, neither can we.  I mean, we could, but it is no longer the best option for our son.

After much discussion with both Zack’s GI here and his surgeon in Cincinnati, we have decided it is time to go ahead with the reconnection surgery.  The results of Z’s week-long GI testing in July showed normal motility and normal anatomy.  The only abnormal finding was that he was not able to empty his colon after the contrast enema.  Like at all.  Not one bit.  Nada. Zero.  Nothing came back out after that procedure.  Normally, the fluid they use for the test just runs back out.  That was concerning because his colon has been diverted by the stoma for over 14 months and he was still able to hold all that fluid in his body.

Zack’s testing also showed redundant bowel loops in his colon.  Think floppy colon…at least that is how Z’s surgeon explained it or maybe just how I understood it.  The redundant bowel loops combined with Zack’s withholding ability makes things a little interesting.

To overcome this, he will have his sigmoid colon removed along with part of his rectum.  By removing the redundancy in his colon, his stool will have more of a straight shot out of his body.  By removing part of the rectum, he should not be able to hold as much stool in anymore.  An important point, Zack is not willfully holding his stool.  He has no conscious control over it.  He likely never learned to stool properly and really has to relearn the behavior.  Fun times.  Man, it is hard to type this because I understand it when I am listening to the doctor, but I am not sure if people can understand my explanation.

After the sigmoid colon and part of the rectum are removed, Zack’s surgeon will attach his remaining colon to the remaining rectum.  She said they use staples for this at Cincinnati Children’s and that they have had great results. Leaking from the attachment site is a complication from this particular surgery and they have not had any incidences of leakage in over 4 years at Cincinnati Children’s.  Once they attach that segment, air is pushed through while one doctor looks from below and one from above to make sure all looks good.  If they have any concerns at all, they will close Zack up and leave his ostomy to allow that section to heal.  If it all looks good, they will then head up to his ileostomy.

The second part of the surgery will be reattaching the small and large intestines.  At this point, the doctor will assess if she can use all of the small bowel or if some will need to be removed.  It is probable that the part that keeps on prolapsing will have to be resected.  Zack has already had a little bit removed once before (15 cm) .  This should not affect his body in any negative way.  Once this has been done, she can then close his abdomen up.  He will also have botox injected into his sphincters to make his first bowel movements less painful.  Sounds easy, right?

After surgery, Zack will be on IV fluids until his body begins to produce stool.  Typically, this averages 4 to 5 days.  The first stool will be very watery and full of mucous (I hope you were not eating while reading this…).  Once this happens, Zack will be able to begin eating.  Eating real food should cause the stool to begin to form.  At this point, Zack will begin taking large doses of laxatives.  Are you jealous yet?

We expect Zack to be inpatient for 5-7 days.  Once he is released, we will stay another week or so to help regulate his laxative dose.  This involves having x-rays to make sure he is emptying properly.  We expect to be in Ohio for a total of two weeks if all goes according to plan.  We are due for that one of these days….

My eyes are now burning because thinking about all of this makes me tired.  We thought we had more time before Zack would have this surgery.  When we left Cincinnati, we thought he was done with surgery until next summer.  We thought Zack would be able to have a break from surgery and hospitals and pain.  I think all of us will just be glad to get this over with and move on to the next phase.  I originally thought the next phase was going to be easy, but it sounds like it will have its own challenges.  Hopefully, those challenges will be able to be managed on an outpatient basis and without more surgery.

We will update our blog once we get to Cincinnati.  Prayers welcomed and appreciated.  As always, hug your babies!

~Dawn