July 2018 Update

Time for a Zack update.  I’m tired, so I don’t know how fun this will be to read.

For the past few weeks, Zack’s belly has been hurting.  While Jim was away Zack had two episodes of pretty intense pain that were fairly short in duration.  He was having his usual lack of output during the day along with a swollen stoma and prolapse thrown in to the mix.  Adding to the fun was a lump that randomly appears next to his belly button.

This face is Zack’s pain face.  It kills me.

The lump…sometimes it is on the right, sometimes on the left….

Additionally, Zack has been suffering from some pretty intense anxiety.  He is worried about dying at night.  The worry is so great that it keeps him from falling to sleep.  Seeing him so scared and being unable to calm him is pretty hard.

Last week Zack had a hard day with belly pain, distension and lack of output.  He thought he needed to be hooked up to his feeds because he was soooo hungry.  Turns out he actually had a belly ache.  Once we attached him to his feeds, he began crying in pain. Jim and I felt he was OK and got him ready for bed and then things went a bit wonky.  Zack was so upset about dying, convinced he was low sodium and worried about his belly that he actually asked us to take him to Walter Reed.  Zack NEVER asks to go to the hospital.  Jim and I were still not positive he needed to go but, because Zack is almost always right, off we went at 11:30 at night to the ER.

Zack did well until the staff began discussing getting blood for labs and then angry badger made an impressive return.  Jim says angry wolverine is a more accurate description.  Jim needed to restrain him.  The staff discussed giving him ketamine or ativan to calm him down.  I left the room because it was too upsetting to see him like that.  The staff and doctor were so incredibly kind and tried really hard to help Z feel more comfortable.  After about 45 minutes of fighting, Zack was able to calm himself down and no ketamine or ativan were needed.  He was then able to ask the nurse if she could use a butterfly needle to get his labs and even helped her find the best vein.  All labs and x-rays came back within normal limits.

The doctor said that his belly symptoms were consistent with an intermittent obstruction.  These happen to him most days, but this one was particularly painful and his belly was distended making it a bit more intense than our average day.  As soon as his output started back up he felt much better.  Also typical for him.  So basically, more of the same crazy we have every day with some major anxiety added on top for fun.

The next day, Zack’s GI doctor and I spoke.  We know that Zack has narrowing near his jejunum and another 20 cm in from his ostomy.  We know that surgery would probably fix that issue, but not address the underlying issue – which remains unknown.  Given his history and our desire to NOT have more surgery, he came up with a three-part plan to try to help Zack.  The plan is not found in any medical textbook as we are trying to find things that work specifically for Zack’s “unique” body.  The first idea was to try to simulate the relief Zack seems to get with barium by essentially doing a Miralax cleanout once a week.  We are on our second attempt and the reviews are mixed.  Barium seems to give Zack relief for about a month.  The Miralax lasts about a day.

We did not see any improvement the first week.  Zack’s belly hurt the very next day and there was not any real noticeable difference in his output.  We gave Zack his second dose this past Sunday and still did not notice much of a difference.  Zack’s stoma has been just as swollen and his belly still hurts.  However, although his output was still low today, he actually had output.  Zack also asked us to give him more Miralax to help his belly feel better.  So, maybe there is hope?  We will continue this for a few more weeks.

If the Miralax trial does not do the trick, our next step will be to try to stent open his stoma with a red rubber catheter.  Of course, Zack would need some sort of light sedation for that and well……

How would you like that inside your intestines?

Our third option is to do more scopes and get full thickness biopsies to look once again for eosinophils.  If we find those again, we would do a trial of steroids and if we see improvement in his belly, redo the scopes to try to prove the steroids are helping.  There is much more to all of that, but the gist is to try to figure out if we are actually dealing with eosinophilic ganglionitis. Yes, we have been trying to do that for a few years, but were waiting for Zack to be a bit sicker.  He still is not really technically sick enough, but it is time to try.  Isn’t that nice?

In the meantime, Zack’s anxiety has been getting worse.  As I said before, Zack has become so worried about dying that bedtime is just not happening.  Jim and I found ourselves getting upset with Zack and frustrated with our lack of sleep rather than seeing that our child was/is actually really scared.  Today we met with his psychologist and had a telephone consultation with his developmental pediatrician.  Jim and I feel much better after speaking with the two of them and have a new game plan there as well.  Starting tomorrow we will be switching up some meds and adding some new ones.  We are also working on ways to reassure him, working on ways to help him process his thoughts and feelings, and working on ways to help distract him from those moments which are overwhelming.

Zack has also rekindled his love of watching Miracles From Heaven.  It is a movie about a little girl with intestinal issues that are different from Zack, but similar in many ways.  He seems to really like seeing her get an NG tube, a feeding tube and, of course, seeing Dr. Nurko make a cameo apperance.  He wanted to know why God healed her and if He could heal him.  He also started asking me questions tonight about what happens when you die, if you still have a family in heaven and how God heals you in heaven.  While those may seem like heavy questions for an eleven year old, I prefer to see it as a good sign that we may finally be getting to the root of his anxiety.

I have several friends with kids who are chronically ill.  They have reached out to us and I cannot tell you how much that means to us.  While I am sad to learn that their children also suffer from anxiety over medical issues, it is nice to know we are not alone….because in the middle of the night it sure feels lonely.  I hate that kids who are sick struggle with these issues.  AND I am also so grateful that the doctors who care for them take this seriously and are compassionate and kind.

Lest you think all is doom and gloom around here, Zack does have some fun things happening.  His Aunt Carie is in the States for a few weeks and we have some shenanigans planned with her.  Tennis is in full swing (ha!) and Zack has actually been hitting the ball OVER the net this year.

Our neighborhood is full of boys and Zack has been enjoying playing with them and I love watching that.  Captain Awesome is set to start some new training to hopefully learn how to be a support to Zack and Z is thrilled about that.  We have also managed to hit two carnivals this summer.  At the last one, Zack met up with his cousins and that always make him happy.

Zack with Kelsey (in white).  She’s pretty great.

Tonight we made a new summer bucket list and we hope to start marking things off.  High on his list are going to the beach, making slime, going to Hershey Park and playing with Jake.  We still have another month to make all of that happen, right?

Hug your babies!

~ Dawn

 

Surgery #10 Update – Home

We are home.  The end.

Just kidding.  I am serious about being home though.

Everything I wrote in the last update was true.  Everything that happened in the OR was different from what anyone expected.  When last I updated on the Zachary saga, surgery and GI thought that Zack’s stomach mucosa had prolapsed.  The plan was to take Z to the OR as an add-on late in the day on Friday.

Both GI and surgery planned to work together to figure out how to handle the situation.  The GI team would perform the endoscopy to look into Zack’s belly.  From there, three scenarios were given.  One idea was to get the prolapse to reduce (go back inside) and be done.  The next was to move the g-tube to a new site and be done.  The third was to add-on to moving the g-tube by doing an exploratory laparoscopy to see if the surgeon could tell why Zack keeps intermittently obstructing.  We were prepared for all three scenarios, but hoping for the easiest one.

Zack was admitted early Friday morning so that he could get ready on the ward instead of in the Ambulatory Procedure Unit (APU).  The APU is a bay style holding area before you go into the pre-op holding area.  This place freaks Zack out and as he is anxious enough about medical stuff.  Being able to be in his own room is just better for the entire hospital.  No, seriously, it’s true…  Since he was being added to the OR schedule, that meant lots of time just waiting around.  This is how Jim and Zack felt about that.
Zack was not happy because the PICC team could not get a vein for his IV.  They decided his body was too cold.  He was wrapped in blankets with eight hot packs tucked inside.  He was definitely warm, but the PICC team was delayed and he was super warm by the time they returned 2.5 hours later.

When they finally took him back, Zack did a really good job of remaining calm.  He was able to remain in his room while he received his versed and wheeled down while he was loopy.  That made taking him back the best experience we have had in years.

The surgery and GI teams scoped him and found an area of “schmutz” (a technical term I assume) on the stomach wall that they were able to clean up.  I guess this was where the g-tube had been rubbing.  When they went to reduce the prolapse they discovered that it was not stomach tissue at all.  It was a keloid.  I read this description of keloids in an article from medicinenet.com

A keloid, sometimes referred to as a keloid scar, is a tough heaped-up scar that rises quite abruptly above the rest of the skin. It usually has a smooth top and a pink or purple color.

The doctors came into our room to tell us they had good news and bad news.  I did not like that!  They told us about the keloid and how it was an easy fix – the good news.  For the life of me, I could not figure out how there could possibly be a down side to that!  The surgeon said that the bad news was that the way they had to fix it was probably going to be something that Zack would not like.  In Dawn Speak, he cut out the area in a big circle shape, then had to cinch the skin closed, apply some ACell wound healing “paper” over it (cool stuff, you should check it out), suture 4 plastic bumper thingy’s (no idea what they are called) to Zack’s skin temporarily and place his g-tube on these.  Got it?

This is a new surgeon to Zack.  The surgeon Zack has had for the last 5 years is leaving the military, sadly.  We have known his new surgeon for some time and have heard great things about him.  However, whenever you work with a new medical team, it takes some time to learn how they work and for them to get to know you.  One thing about Zack is that lots of things that should hurt a lot do not (intestinal things) and things that should not hurt do (skinned knees).

Anyway, Zack does not seemed phased by this new configuration of g-tube hardware.  It only needs to stay in place for 14 days, yay!  However, for those 14 days he is not allowed to participate in PE, recess, karate, PT, ride his bike, run, jump, you know…have fun.  He has only asked for Tylenol a few times and seems to be walking around just fine.  Our biggest issue, so far, is that the wound and tube are covered in Tegaderm with a little hole cut out for the feeds to attach.  The Tegaderm is like a plastic sheet covering the g-tube to protect it.  We like that, however, to attach the tube to the g-tube, you have to actually grasp part of it that is under the plastic.  This makes attaching the tube quite an event as Zack stomach is sensitive to being pushed on at the moment.

Another issue we had at the hospital is that anesthesia caused Zack to be nauseated for the first time ever.  He was sick in the PACU.  He got some Zofran and was sick again on the ward.  The next morning he woke as happy as could be, except that he was asking the surgical resident and nursing staff for sodium.  They did not give him any.  Shortly after that, he started to say his head was hurting, took off his glasses, turned off the TV and asked me to close the blinds.  Then he started telling me that he needed his stomach vented because the IV fluids were filling his stomach too full.  We called the nurse and when she asked him how he felt his said, “Not awesome.”

Zack was given some Zofran and IV Tylenol and still did not feel great.  The therapy dogs came to visit and he pet them and went back to bed.  Zack does not stay in the bed unless he feels pretty bad. The surgeon came in and said that we should give him his sodium pills and start his CeraLyte back up, but keep him on just sips of clears.

Another thing that happened yesterday was that the surgeon was able to see Zack go 5 1/2 hours without output and the nursing staff saw his belly distend.  Zack’s GI knows this happens frequently and we know that there is really nothing we can do about it, but it is weird and frustrating.  The surgeon agrees with everyone else that he is obstructing intermittently. We talked about living with this for the past two years and being able to continue doing so since it has not become an emergent issue.  But we were also able to talk about how that keeps us a bit anxious most of the time because we know it can lead to more serious issues.  We left it at that, but at least he is aware and thinking about it now as well.

Happily, after Zack received all that sodium and a had good night’s sleep he woke up back to normal.  He was thrilled to order a pancake for breakfast and noodles for lunch and could not wait to get home.

He got his wish and his best buddy was here waiting to greet him.  Now for mom and dad to get some rest……

Hug your babies!  But not too tightly if they have just had abdominal surgery….

~ Dawn

Surgery #10

Quick update.  Zack started complaining of g-tube pain in school on Tuesday.  His school nurse told me his g-tube area looked swollen.  Being an awesome mom, I told her it always looks that way.  I was wrong.  She was right.

That evening Zack was in a LOT of pain.  We spoke with our friend who suggested contacting his doctor and taking him in to the ER.  We texted Z’s GI doctor who suggested the same thing, but at that point it was 11:30 p.m. and Z had finally fallen asleep.

Yesterday I figured I could probably get an appointment and avoid all the germs in the ER.  Wrong.  Off we went.  Saw Peds right away and the surgery team came quickly as well.  Did a contrast study to show g-tube was placed right and noticed the balloon looked defective.  Z still in pain, so we decided he would come back in the morning to have the area numbed and to get the tube out and a new one resized.

Today started off that way, but our GI nurse extraordinaire suspected it was actually stomach mucosa.  Doctors came in and agreed.  Surgery called again.  Several hours later it was determined that this needs to be fixed.

Currently we have three different scenarios of what will happen.  The easiest involves an overnight stay.  The more complex a stay of 4-5 days.  Zack will be admitted in the morning with surgery being an add on late in the day.  We will keep you posted (Dad, Carie, Sandy).

Hug your babies!

~ Dawn

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas!

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~ Dawn

 

Surgery #9 Day 3 – More Changes….

I apologize for the lack of updates for the past two days.  When we are in the hospital, time moves along both excruciatingly slowly and super quickly. I cannot explain how it happens, but I promise it does.

Friday saw Zack still having trouble with pain.  It is common after abdominal surgery for it to take time for the intestines to begin working again.  Zack’s intestines typically begin working in about twenty-four hours.  This time, however, they decided to change things up.  At twenty-four hours after surgery Zack still did not have any output.  His stomach was beginning to get distended and hard.  The doctor was not overly concerned because Zack was not vomiting, but we kept him on sips of liquids rather than beginning food.

Zack does not like to be in the hospital bed. He will do anything to get out of it.  Even when he feels bad, he will make his way to a chair or sofa.  On Friday, Zack spent almost the whole day in his bed.  He wanted the TV and lights off.  We knew he was feeling sick.  Finally, near the end of the day, his output began to start.  Because it was so slow, Zack still did not feel much better and was pretty teary and clingy.  Thankfully, he was able to get a few hours of consecutive sleep and woke up feeling much better on Saturday.

Our guy requested his traditional first meal of pancakes and managed to eat most of one before declaring himself full.  Saturday was also the day that Zack finished his course of antibiotics.  We always rejoice when medications begin to be decreased.  Zack declared himself free of pain and ready to get rid of his PCA.  The pain team kept Robaxin and Valium and rescue doses of Dilaudid on his orders to help cover his pain, but he only ended up getting the Robaxin.

We were surprised that Zack still did not want to go to the playroom.  He was ready to begin walking the halls though and did an awesome job cruising the floor.  The surgery team decided that they wanted him to keep his catheter in for one more day to continue to closely monitor his fluid losses.  Zack was actually happy about that…he is a strange one.

Last night was my turn to sleep in the hotel.  It was glorious.  Room service for dinner, celebrity Chopped on the television, and seven hours of uninterrupted sleep in a soft and cozy bed.  Glorious, I tell you!  When I got back to the hospital this morning, Zack was already up and in his chair playing Lego.

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Drew and Jake arrived and surprised Zack this morning as well.

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Once Z had his pesky catheter removed, he decided that he wanted to show his brothers all around “his” hospital.  We walked down to the playroom so that he could challenge Drew and Jake in a game of Wii and show them his favorite toys.

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After that, Zack wanted to show them all of the pretty Christmas decorations in the main hall.  Here are a few of his favorites, the Superhero tree and Batman wreath.

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After that, Zack was wiped out.  It was a good time to head back to his room and get some snuggles with his biggest brother.

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Zack’s nurses have been surprised at how quickly he has recovered today.  He is looking great and has much of his energy back.  He has been doing so well that his surgeon is ready to discharge him tomorrow just five days after being admitted.  Considering all that he had done, that is pretty amazing!

Our surgeon also talked to us about some concerns she had with our current plan to start Zack’s refeeding trial this coming week.  She told us that after thinking things through she felt that it would be best for Zack’s anastomosis to heal for about a month before beginning his refeeding trial.  With all of the complications Zack has had, she wanted to be sure that the test accurately reflected his colon’s ability or lack of ability to work.  If we tested him now and there was a problem, would we be certain it was because of Zack’s colon OR would we wonder if the healing process was skewing our results?  We have struggled with similar issues before, so her new plan actually made a lot of sense.

We all know that the latest manometry test revealed that most of his colon was not working.  We also know that because of his high ileostomy output, he is not a candidate for the jpouch surgery or able to keep an ileostomy without prolapsing.  This has complicated our next steps and made things much more difficult.  If Zack is to be reconnected (this needs to happen), some portion of his colon must remain… but which part and how much?  We need the refeeding test to be an accurate representation of what is going on inside of Zack’s intestines.

Jim and I were not thrilled about the new plan at first. We were already in Cincinnati. Jim had time off from work.  We had a room waiting for us at the Ronald McDonald House.  Christmas presents were bought, wrapped and in the trunk of our car.  Drew and Jake were already here.  I do not like changing plans like that.  It messes with my mind.  Once we had a moment to sit down and discuss things, however, her plan made much more sense.

Zack’s surgeon also told us that if we were comfortable with the idea, she would be willing to have us try the refeeding trial at home with the help of our Walter Reed doctors.  That would save us another trip to Cincinnati.  We really liked that idea.  I was able to speak to our GI back home and he felt confident we could do it there as well.  Our surgeon here will be talking to both our GI and surgeon at home to talk about her plan as well as plans for different complications that might arise.  And so….a new plan has begun to form.

It should not have surprised me that things would change once again.  I think this is a lesson I must need to learn many times over because it keeps on happening.  The good news is that if Zack is discharged tomorrow, we should be able to drive home on Tuesday and be able to spend Christmas at home.  We just need to be able to coordinate all of the home nursing needs we have with our infusion supply company before we leave.

There is much more to this story, but once again it is late and I am tired.  I will post again tomorrow and let you all know what actually happens with this ever evolving story.  Until then…

Hug your babies!

~ 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

Another New Plan

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Remember that plan I wrote about last time?  You know the one where Zack would be having a colectomy or some version of a colectomy as soon as his surgeon got back from China?  Yeah, forget all that.  We have another new plan and I am mostly certain it is the final plan….

When our GI in Cincinnati read Zack’s manometry test, his recommendation was that Zack have his colon removed sooner rather than later.  We could see that most of his colon was not working and with Zack prolapsing again, it made sense to take it out quickly to avoid more emergency surgery from a prolapse gone wrong.

Our surgeon in Cincinnati had been recommending a colectomy since last March.  When she returned from China and reviewed all the data, she did not feel comfortable with this recommendation any longer.  A little back and forth between our doctors in Cincinnati resulted in a change of plans.  Both doctors were/are concerned with the amount of output Zack has daily from his ileostomy.  I learned that a normal amount or desired amount of output per day is about 300 ml.  Zack is averaging between 1,000 ml – 1,500 ml per day with some days as high as 1875.  They are concerned that if they take his entire colon out and perform  j-pouch or straight through surgery on our guy that he will basically be pooping all day long.  That is no way to live.

To try and combat the high output the doctors had Zack take Flagyl for 10 days.  It was hoped that if his output was due to small intestinal bacterial overgrowth it would improve with the antibiotics.  That did not work.  A week later we added pectin to Zack’s overnight feeds.  Yep, pectin. You know, the substance added to thicken jams and jellies?  Evidently it is also helpful in thickening stool and slowing its transit in people with high output ileostomies and short gut.  I will never be able to can fruit again without thinking about this.  Wait!  I have never canned fruit.  I guess that dream just died. I digress…we are still in the process of determining how well pectin will work for Zack.

Zack’s body has proven time and time again that it does not like ileostomies.  He is currently on revision number five and we all know how those have gone.  If his body could handle an ileostomy, we would be thrilled to have a permanent one.  I would never have believed I would be wishing for that when all of Zack’s surgery began in 2013!

The doctors have gone back and forth about different options.  Everyone now agrees that there is something physically wrong at the anastomosis (reconnection) site.  We can see it on two different contrast enema scans.  Zack’s GI here has been saying this all along.  He’s pretty smart.

The current plan is for Zack’s surgeon in Cincinnati to take out the troublesome area and those pesky staples.  Zack has complained that his staples hurt from the beginning.  She thinks that his body really does not like them, so she will be sewing his intestines back together this time.   At the same time, she will bring up a loop of colon next to his ileostomy.  This is called a mucous fistula and he has had this before.  His ileostomy will be revised and tacked down to buy us some time while everything heals and we do some “interesting” testing.

Now we get into some details that you may want to skip if bodily functions are not your thing.  Zack will be in the hospital between 5-7 days to heal from his surgery. We will then hang out in Cincinnati to start a refeeding trial.  What that means is that we “get” to take some of Zack’s output from his ileostomy bag and use a syringe to put it into the mucous fistula and down into his colon.  The purpose of all of this fun is to see how Zack’s colon reacts.  If things go well, we will come home after a week or so and continue with the experiment for an unspecified time.  We were told that this is the most conservative approach and “the last test” of Zack’s colon. If things do not go well….there is another plan for that, but I will save that for another day.

Zack’s surgeon’s ultimate hope is that she will be able to keep at least a few centimeters of his colon.  That will give him the best chance of achieving good bowel control.

Although this new plan involves more surgery for Zack, I appreciate all attempts to keep some of Zack’s colon.  However, the thought of going through all of this again makes my stomach upset.  It took a long time to convince me that removing Zack’s colon was the best option.  I had prepared myself mentally for the operation and all that would come with it, but still I worried.  Interestingly, my worries were the very ones the doctors had as well.  I appreciate the fact that they are most interested in the best outcome for Zack.

Now that all of our questions are answered, at least the answerable ones, our surgeon is looking for the first available OR date.  We have no idea of the time frame.  It could be this week, it could be next week, it could be after Christmas.  And so we wait and cross our fingers that pesky stoma stays put.IMG_5007

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).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Hug your babies!

~ Dawn

 

Colorado and Surgery

I am happy to report that Zack has been doing pretty well the past few weeks.  Yay!  We have been watching his stoma carefully as it has been “trying” to prolapse.  Every few days or so we can see the inside of his stoma trying to push through.  So far, his body is keeping those pesky intestines inside where they belong.  We are crossing our fingers that it stays that way for a long time.  That would be awesome.

We have also been having a little issue with his g-tube.  Zack has been itching like crazy around the site.  When it first began, we saw our ostomy nurses and they thought it might be granulation tissue.  Granulation tissue is common around g-tubes and is red, raised, oozy tissue that grows around the gastrostomy hole.  It is usually treated with silver nitrate and goes away.  When Zack’s was treated it hurt like crazy and the tissue grew larger instead of going away.

We saw Z’s surgeon last week and he said the tissue is actually stomach tissue and it needs to be surgically fixed.  Tomorrow is the day and we are pretty glad. When Zack’s g-tube was first placed it had a long tube coming from his belly. The long tube is kept in place for eight weeks until the body has time to form a tract from the outside into the stomach.  After that, this long tube is replaced with a button which almost flush to his skin.  Zack’s surgeon hopes to put that button in tomorrow as well.  I actually love his g-tube and am so glad he has it.  It makes getting nutrition into our guy so much easier.  It is a great way to give medication and we can give him extra fluid when he is a bit dehydrated.  I think he will like it much more when it “fits” better and is less oozy and weepy and painful.

Last week after we scheduled Zack’s surgery, we hopped on an airplane and headed to Colorado to see our oldest son graduate from college.  It was a whirlwind trip, but we were able to stop and see Zack’s buddy Logan and his sweet mama Stephanie.  Zack and Logan were in the hospital together here in Maryland and Zack talks about Logan all.the.time.  His mom is pretty awesome as well and I have been blessed by her friendship.  The kids played while it hailed about 6″ outside.  Nope, that is not a joke.  We waited a little bit too long to get pictures as you can see.  Zack and Logan are not amused, but Stephanie looks great.  You can read more about Logan on his Facebook page here and, if you live in the stone age and do not have Facebook, here is an amazing article about our friend.

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Once the hail storm let up and we de-iced our van, we headed up to Boulder to see the graduate.  Zack was so excited and jumped out of the van and ran into his brother’s arms for a big hug.  I wish I had a picture, but here is one later that day.

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Here is one with all three of my guys cheesin’.

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Graduation itself was rainy, cold and really pretty miserable.  I give you exhibit A:

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Later in the day it stopped raining and we headed to Pearl Street for lunch and some entertainment.  Little did we know, Zack would be the entertainer.  He was a street performer’s helper.  Here he is as the guy does a back flip over him.

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Another of Zack providing child labor.  I would say free, but the guy paid Zack six bucks for helping out.  Zack was thrilled and declared that he was rich.

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Before leaving, Zack’s big brother showed him a dinosaur.  Zack was not sure if it was real and it kind of scared him.  I do not think the store had to worry about telling Zack not to touch!

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We are all very thankful that we were able to attend Drew’s graduation.  We are thankful we got to see our friends.  We are thankful that Zack’s g-tube could be fixed this week instead of last and that his stoma is holding steady for the moment.  We will update you after his surgery tomorrow.  It should be quick and easy and not require staying overnight.  Fingers crossed.  I leave you with a picture of our favorite graduate.

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Hug your babies!

~ Dawn

 

Home!

Write this down in the history books.  Zachary Penrod was discharged from the hospital three days earlier than expected.  Yes, you read that correctly.  For the first time in the history of Zack, something went BETTER than predicted.  Even his surgeon was surprised.  She kept knocking on wood every time we talked about how well he was doing.  I am still in shock, but in a good way.

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Zack and Jim participating in Easter fun.  Aren’t they the cutest?

Zack was officially discharged at lunchtime on Friday.  Just to be safe, we told his doctor we would spend one more night in town.  Hanging out one more day worked great for us because it allowed us to meet some friends from our high school days for dinner.  I think we all look pretty great 30 years later!

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Mini Munich Reunion!

Before we left the hospital we were able to talk to Zack’s surgeon again.  We were curious to know where in the colon the distention began.  Was there a gradual transition zone from good to bad?  Did any of his colon look normal?  Turns out the answer to both questions was no.  His colon looked bad from the beginning of his large intestine all the way to the end.  That makes it easier for me to let go of my dream of saving it, but it still bugs me not to know why it does not work. I guess I will just have to get over that.

We also discussed a few theoretical plans for the future. The best plan, in my opinion, is for Zack to keep his ileostomy for a long, long time.  Given his ileostomy track record, we felt it would be appropriate to discuss what we would do if he prolapses or obstructs again.  If that happens, we will move forward with a colectomy.  There is a good chance Zack’s surgeon could perform it laparoscopically as well.  How crazy is that?  By avoiding opening his abdomen, the recovery would be much easier and much quicker.  We were also able to talk to the pain team about a future colectomy pain plan. They gave us their suggestions and we filed them away for the future.  Even though we all hope this ileostomy will be the one that works forever, it is nice to have a plan.

Jim and I still have a few lingering concerns about Zack’s body.  What causes his ileostomy to have such high output?  Why did he prolapse so many times?  Even though his testing shows his small bowel works correctly, are we really sure about this?  Hopefully his body will give us time to feel better about how his small bowel functions.

Some other good things that came out of our visit to Cincinnati this time include coming off of most of Zack’s medication.  He no longer requires Elavil to help with stomach pain, he no longer needs to take any Dulcolax (laxative) and we are weaning him off of Prednisone.  Of course, we did have to switch from a laxative to Immodium.  I have written about the irony of this before….

Because Zack has been doing so well, we were able to get home in time for Easter. Luckily, Cincinnati Children’s has a Concierge Service and they helped us mail Drew his Easter goodies in time for the holiday.  Sadly, we did not have a thing planned for our own dinner or Easter baskets, but we managed to pull it together and have a pretty awesome day.

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It is just too hard to get genuine smiles early in the morning…even at Easter.

Our new plan is to enjoy Zack feeling well for as long as possible.  It is amazing to see how much better he feels now that his colon is not being used. We do not miss hearing his belly sloshing every time he moves.  Zack says his stomach feels better already and based on his energy level we believe him.  He says that his pain level before his surgery was ten, but now it is zero.  We are still working on mastering the pain scale, but you get the idea.  His belly is still “puffy”, but we were told it will take months for his colon to shrink back down to a normal size.

If all goes well, our guy will be participating in the Special Olympics for his school in a few weeks. He also has great plans for taking tennis lessons, swimming lessons and learning karate this summer.  Nothing would make me happier than to see these dreams realized.  Thank you guys for your prayers and well wishes.  Fingers crossed that this ileostomy will be the one that actually works!

Happy Easter!

~Dawn