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!

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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

Surgery 7 Day 3

Yesterday Zack was a long day.  Our usually cheerful boy was extremely crabby.  He was not happy about much and did not want anyone to touch, look or talk to him. That was fun.

The pain team came in and asked how we thought he was doing and what we thought about getting rid of the PCA.  Since Zack had pushed his pain button 24 times in a two-hour time period, we all decided to wait and reassess later in the evening.  Because Zack was not getting much relief from the pain pump, he was given a dose of Valium and then put on oral Oxycodone.  (One should not mistake Oxycodone for Oxycontin..we were given a brief.)  His pain seemed to be a bit better, but not his attitude.

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Zack and his gear yesterday..

Happily, Zack’s stoma started having output yesterday morning.  Whenever you have intestinal surgery you must have output before you can begin to eat.  When you are on steroids you are hungry.  Food is important.  Zack was beyond happy to be able to have some jello and his beloved G2.

As usual, we had some issues keeping his ostomy bag on and he needed to be changed three times. Luckily only one of the changes occurred overnight.  Another happy thing is that our nurse was training a nurse new to the floor, so during the “disaster”  the three of us were able to get that mess cleaned up in about 30 minutes.  It was a pretty substantial mess….

Today Zack’s main goal was to get off his PCA so that he could get down to the playroom for some Batman and Robin Wii.  He told the pain team when they arrived that he did not need anymore pain medicine.  Because they stopped the pain medicine, he was able to come off fluids.  He was also able to lose his catheter.  A few hours later, we were able to stop his feeds until later tonight.  That means at this very moment, Zack is not hooked up to any machines.  That will all change in an hour when he has to go back on his IV for more antibiotics.

Because Zack achieved his goal of getting off his pain pump, he was able to go down to the playroom.  He also had his diet advanced and had pancakes for both breakfast and lunch.  I think he may be living out one of his dreams.

Jim and I have spent our day in training.  We have been trained in g-tube care.  I have to say that it seems pretty easy and we like easy.  We had a refresher course in ostomy care.  That felt a bit like labor.  You forget what you are getting into and then it all comes flooding back…we are still in that phase.

The good news is that Zack is doing extremely well.  We have not yet had a surgery where we able to be discharged earlier that expected, but it looks like that might actually happen this time.  As long as he does not develop any new issues overnight we are planning to be discharged tomorrow.  I am pretty sure the heavens are rejoicing.

Hug your babies!

~ Dawn

 

Surgery #7

Surgery number 7 – Complete.  Whew.  I do not think it matters how many surgeries your child has had, it never gets easier sending them into the OR.

Today we were extremely proud of Zack.  He was awfully brave.  Child LIfe met us before we even walked into Same Day Surgery to be admitted and it was someone Zack had met before.  He was happy to see her and show her some of his new games on the Kindle.  Unlike last time, he walked right in and got vitals without so much as a whimper.  That is progress people.

It appears that Zack has wonky veins and now requires the Vascular Access Team to place his IV.  I guess that means he is a really hard stick.  I know our nurses at Walter Reed already know that.  Today they had special nurses come with an ultra-sound machine to find his veins.  They said many of his veins were too little to hold a good IV. Zack did not care for getting his IV this way.  It might have had something to do with the vein that blew and the blood that was all over his arm.  Maybe.

When it was time to go to the OR Zack got a bit teary.  He said he could not do this again.  He said he was not going to go to that room again.  We finally got him walking towards the OR and he was really starting to have trouble holding it together.  His surgeon, whom he adores, heard him and came out and walked with him.  Zack was brave for her and did not fuss again until we got to the induction room.  Dr. D stayed with us and got her phone out to play games with Zack while the anesthesiology team snuck around and administered their drugs out of Zack’s eyesight.  Once he was asleep, we kissed him and off he went.

During “the walk”, Zack told his doctor about getting Braggin’ Dragons at school.  These are little slips of paper that recognize children for being ready to learn and using good behavior in the halls among other things.  Zack currently has 19 and when he gets to 20 he gets to go out to dinner.  Dr. D told Zack she was going to give him one for good behavior to show his teacher.  She is a woman of her word and a woman of many talents.  He came out of the OR with this on his ostomy bag:

dragon

Because Zack’s colon had not been working, we had to do rectal irrigations each day to get his stool out.  It was a lot of fun and I bet you are jealous that you did not get to participate.  Anyway, we were not able to ever completely empty his colon like this, so the first part of the surgery was spent cleaning out his stool.  I am so glad I am not a colorectal surgeon or a GI.  They earn every dollar of their salary and probably deserve a lot more.

After that, the team placed his g-tube.  I learned today that the initial g-tube has a long tube while the incision heals.  After about four weeks his GI will change that to the little button that is mostly flush to his skin.  I am excited about that for Zack.  Zack also had another procedure that is private, but involved two more incisions that do not feel good.

Finally, it was time for Zack’s fourth and final ileostomy.  Just putting that out there Universe.  Do you hear me?  FINAL ileostomy.  No prolapsing this time.  No obstructions.  I mean it!  Happily, Zack’s surgeon was able to do the whole procedure laparoscopically.  This involved just one small incision in his existing belly button scar and then she was able to revise his old ostomy scar and use it for his new ostomy.  Our boy has a pretty scarred up abdomen, so we appreciate this immensely.

When we met with the surgeon afterwards, she showed us pictures of his colon.  They were not pretty.  His transverse colon was significantly enlarged and floppy taking up a lot of his abdomen.  The descending colon that we were irrigating looked better than the transverse colon, but only because we have been able to keep it decompressed through irrigations.  Even so, it still did not look like a normal, healthy colon.  That made me sad.

The experts here in Cincinnati do not have a good explanation for why Zack’s colon does not work.  They explained again that he acts like he has Hirschprung’s Disease even though he does not.  They said he falls into a small group of kids with dysmotility that they just really do not understand.  They believe his colon works fine until stool is introduced.  I guess someone forgot to tell his colon how to do its job.  I do not understand how that works, but evidently it happens….just not often.

Jim and I have come to terms with the fact that his colon is not going to work and that we may never know the reason why.  Actually, Jim has been at peace with that for some time.  I am still fighting against it, but I am getting worn down.  I told Zack’s surgeon that if his ileostomy fails again, I will be ready to take his colon.  Of course our hope is that his ileostomy will work.  He is due for a break about now.

I was hopeful we were going to have a peaceful night, but then his TAP block wore off. The TAP block is a nerve block in Z’s abdomen. Tonight has been spent trying to get itching under control from the pain meds, getting Zack to actually use his PCA for pain, getting loads of meds and trying to convince Zack all is well.  He is convinced that he will never stop itching.  The nurses have tried Benadryl and Nubain and he is still itching like crazy.  Sleep is overrated…..

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 Before the itching began…..

Some of you have asked about sending Zack ecards.  Here is the link for you.  He is in the Burnet Campus, Location A in room 439.

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

I wrote most of this a bit earlier.  This night has been particularly long.  It is now 12:40 and our trooper finally fell asleep.  I think I will join him.

Hug your babies!

~ Dawn

 

 

Decision Made

Trying to decide the best surgical option for Zack was a lot harder than we expected. After several days of agonizing deliberation, we have finally come up with a plan AND let the surgeon know our decision…you know…to make it official…and keep us from changing our minds.  There were a lot of arguments for removing Zack’s colon, but in the end we just did not feel comfortable with that decision.  Call me crazy, but we wanted to be 100% sure before removing a vital organ from our child.

Instead, Zack will be spending his Spring Break in the hospital having another ileostomy and getting a g-tube.  I am pretty sure the Easter Bunny knows how to find Cincinnati Children’s Hospital, right?  Ileostomies still frighten us a bit, but this option will allow Zack’s colon time to rest.  We know it might not ever heal or work properly, but it will allow us time to try to figure out exactly what is causing the issue.  At least, that is our dream.  He has already been tested for everything they can think of and a definitive diagnosis has been elusive.  We just felt that we needed a little more time before giving up his colon because once it is gone, it is not going to coming back.

Another reason we chose this option is because Zack’s barium enema showed some sort of obstruction at his anastomosis.  It could be that there really is no obstruction.  It could be that his intestines are so big that his colon has completely shut down and nothing is moving.  That is one theory.  OR perhaps there is something there that everyone is missing.  Maybe?  Doing the ileostomy will allow his surgeon to check out the anastomosis internally and IF there is a physical obstruction of some sort, we can redo that surgery.  Since nobody is entirely sure, we felt it was worth a thorough investigation.

We are a bit concerned about how Zack will react to another ileostomy.  He already says he does not want a g-tube and that he likes his NG tube best.  Crazy child. A g-tube is a little tube place through his abdomen into his stomach.  It will allow him to get his formula that way rather than through his nose.  It is not noticeable through his clothes and seems much safer and easier to deal with than his NG tube.  If that is causing such a strong reaction, I am giddy with excitement and cannot wait to see his face when he learns about his ileostomy  His last ileostomy was loads of fun, so we will have to resort to some creative parenting to sell this one.

Our target date for surgery is the week of Monday, March 30.  Ileostomies are not super hard surgeries.  The anticipated hospitalization is 3-5 days.  One of these days the anticipated hospitalization date will jibe with the actual hospitalization stay.  All I am saying is Zack is due for a complication free stay.  It could happen.  Fingers crossed.

Today Zack received some new rectal irrigation tubes from Cincinnati.  I know you are impressed.  When Zack heard they were here he was so excited.  He says he cannot wait for his irrigation tonight.  We all have dreams.  I guess rectal tubes are Zack’s.  I would like to change the things that excite him to, I don’t know, Disney World or Hershey Park or bunnies.  Something more kid like.

As soon as we have dates, I’ll update again.

BIKE

Hug your babies!

~ Dawn