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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas!

IMG_5213

~ Dawn

 

Surgery #9 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.

IMG_5103

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

IMG_5105

IMG_5114

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.

IMG_5122

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.

IMG_5131 (1)

IMG_5135

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.

IMG_5121

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

IMG_4970

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

Manometry Day

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

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

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

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

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

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

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

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

IMG_4915

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

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

IMG_4919

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

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

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

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

Hug your babies!

~ Dawn

 

 

 

 

Procedure Day in Cincinnati

I have been trying to figure out how to condense our day into a short yet informative post.  I think I have decided that is impossible.

The good news for today is that Zack did an awesome job and did not melt down when it was time for anesthesia.  He was scared and pretty anxious, so the anesthesia team gave him some oral Versed about 45 minutes before they came to take him down to the OR.  It was enough to calm him down a bit.  He started to get a bit upset when transport arrived, so I hopped on the bed with him.  Jim and our Child Life specialist helped keep Z distracted with some Toca Boca games.  Once in the holding area, the anesthesia team just quietly drove us to the induction room while Z continued to play his games. Zack never even realized they were putting him under and went out without a peep. This means our lucky fella finally earned his Batman Lego!  I know he does not look as though he is happy here.  You will just have to take my word for it, he is one happy guy.

IMG_4904

The whole procedure took just a little more than an hour.  Zack’s GI doctor and his team were able to get some good pictures and biopsies and place the manometry catheters.  Zack has one wire coming out of his ostomy and one out of his bottom.  He was thrilled to wake up and find that there were no tubes in his nose.

As Zack was waking up in recovery, we met with the team and Zack’s surgeon for about an hour to discuss a lot of different things.  Here is my condensed version.   Everyone agrees that something is wrong with Zack’s colon.  How to go about fixing it is the problem.  The issues have not really changed too much.  His colon does not look normal on his barium enema study – abnormal narrowing above anastomosis site.  His colon worked properly on his manometry test when disconnected, but was abnormal when connected.  He has hypertrophic nerve cells in his rectal biopsy, he has a positive GLUT-1 stain (I can’t explain it well enough to make sense), AND in his small bowel he has higher than normal output and prolapsing.

If Zack’s manometry comes back abnormal tomorrow, his GI here says it would be a no-brainer that his colon should be removed.  If it comes back completely normal (what we expect), things get a little tricky.  There is a plan, it makes sense, but it has a lot of variations and I am too tired to type it all out and make it readable.  Originally Zack was to be discharged tomorrow afternoon, but the new plan is to hang out here a little bit longer and run some other tests, read the manometry and start to solidify our plan.  In each scenario, Zack will be having more surgery, most likely the week after Thanksgiving.

I will update again tomorrow when we have more of an idea of how things are looking.

~ Dawn

 

Here We Go Again!

It feels a little bit like deja vu.  We are back in Cincinnati getting ready to send Zack to the OR in the morning for his endoscopy/colonoscopy/biopsies and to place manometer catheters.  Hopefully this time everything will go according to plan and we will get good readings.

Yesterday Zack had another contrast enema to check out the anatomy of his colon.  Our GI doctor has been saying that he feels there is an obstruction at the anastomosis site. He had one contrast enema that seemed to support that theory and one that did not.  Yesterday, however, we hit the jackpot. Zack’s enema showed an abnormal narrowing at his anastomosis site.  It felt a little bit like spying Nessie the Loch Ness Monster or Bigfoot.  An elusive, mythical thing that has been speculated on but never found….until now.  Let me show you a picture:

IMG_4836

The white snake-like thing is Zack’s colon.  If you look near the bottom, you will notice a place that looks like it has been cut apart with only the smallest section connected to the end.  That is the abnormality.  It has never shown up on x-ray like this before.  It makes us happy because it supports our GI’s theory that the problem is at the surgical site.  This means there is hope that it might be something that can be fixed.  I like that.

We had the rest of the day to ourselves yesterday, so we headed to the old train station which is now three museums in one.  The highlight for Zack was the Cincinnati History Museum. There is a model of the city from the 1900’s with the nation’s largest S-Scale train. Zack could have stayed there all day, but his belly hurt a bit from his procedure.  The view from the station is pretty nice!

IMG_4860

Whenever we get to Cincinnati Children’s the hospital is always at capacity.  This time was no different.  They were so full that we had to delay our admitting time by four hours while they waited for a bed to become available.  Zack was thrilled!  He was hoping that he would not be admitted at all.  While we waited, we took advantage of the fun things to do at the Ronald McDonald House.  Zack was in heaven playing Ms. Pac-Man in the game room.  The three of us played tag on the playground and, the highlight of the day, Zack helped put money into the washer and dryer.  I do not make these things up.  He thought it was great fun.

IMG_4864 IMG_4875

Zack was finally admitted to the hospital on the liver/kidney transplant and upper GI floor.  He was not amused.  Zack likes his routines and while we are on the same floor as the colorectal ward, he has all new nurses and rooms to get used to and that does not make him happy.  After some coaxing, we managed to get his IV in with the help of the vascular access team, Child Life, his nurse and doctor and a PCA (nursing assistant).  While angry badger did not rear his head, his cousin grumpy groundhog did. Still, it was better than it has been and that is something….sort of.  Here he is pleased with himself after the torture ended.

IMG_4900

When I asked him which pictures to include tonight he really wanted this last one.  I am not really sure why this was important, but I think it has to do with all of the tubes going into his body. His wish is my command.

IMG_4901

Tomorrow is a big day for Z.  We have already spoken to anesthesia and they have come up with a plan to try to make things less stressful for Zack.  We will see how that goes. Zack is hoping to be able to get down to the playroom before his procedure.  Now that his IV is placed in his forearm, his hands are free to use the Wii controllers.  What more can a boy ask for?  Until tomorrow…

Hug your babies!

~ Dawn

 

Zack’s Fun Run

Hopefully from my lack of posts of late you have realized that Zack is living the dream.  He is feeling great.  His stoma is surprising all of us and still holding.  Life is going pretty well for our little guy.  Wait….did I really just write that?  Please do not wake me from this delightful dream!

This past weekend, my sister and I ran in the Army 10 miler in DC.  I had been training for this race since June and was super excited to run.  Running is stress relief for me.  Even though I have a love/hate relationship with running, it has served me well these past two years.  As much as I enjoyed running that race, nothing compared with today.

One year ago Zack was so sick he was confined to the sofa most of the day.  He had little energy, was pale, his belly hurt and things were not going well.  Today, however, was the kind of day that brings tears to our parental eyes.  Zack’s school had its second annual Fun Run.  It is a fundraiser for the school and kids raise money based on the number of laps they run.  The school goes all out and everyone has lots of fun.

Jim and I told Zack we would come and watch this event.  He asked if I would help him run.  Jim and I figured he would do a few laps and be done.  Zack told us he wanted to complete 16 laps (4 miles).  For each lap completed, the students received a jelly bracelet and Zack thought they were looking mighty nice.  We told him that he had a great goal and off we went.

IMG_4780

I am happy, amazed, and beyond proud to report that Zachary Penrod completed 3 3/4 miles and received 15 bracelets!  Can you believe that?  I was so impressed.  He ran, walked, sat down to rest, got back up and did it again.  He had such determination on his face.  When I asked if he wanted to stop (when he was hanging off of me), he looked at me and told me, “No way!  I am doing 16 laps!”  That’s my boy.  So, Zack and I ran.  There are a few times in your child’s life when you see their character shine through.  Today was one of those days.  This run reminded me of his last two years. Zack rarely lets life get him down.  Despite how hard it was for him to run, he never gave up.  I love that about him!

IMG_4792In other news, we have dates for Cincinnati.  Zack will have testing the first week of November.  As long as his stoma holds, we are not going to have any surgery.  Fingers crossed!

~ Dawn

 

A New Record

It is official.  Zack has a new record.  Today marks 10 weeks and 3 days since his last surgery.  While that may not mean much to you, in our house this is a big deal.  You see, Zack has not been incident free this long in over two years.  Two Years!  Cross your fingers, knock on wood or do whatever it is you do to keep the good luck going. Zack’s surgeon is worried that if I speak these words it will jinx us.  Doctors are a curious bunch, but we love them just the same.  I digress…The happy dancing may now commence!

While we are excited that Zack’s stoma is actually holding for now, we are in the middle of making plans to head back to Cincinnati in the next few weeks.  There  was an issue with Zack’s motility testing in August which made it incomplete and invalid.  We were disappointed because that means Zack needs to have the test redone.  That means another admission and another sedation and another yucky test.  Z was not happy to hear that.  His response made us laugh.  He said that the doctors should have to take the test for him and have a tube in their bums.  I guess that seems fair.

A few good things have come out of this new development.  Our doctors and surgeons were finally able to find a time to conference and come up with one unified plan for Zack.  Jim and I appreciate this immensely because, before this conference, each set of doctors had different ideas of what we should do next.  As parents, this was tough because we trust each of them completely, but they were not on the same page. The decisions we had to make were so big that we (I) felt a bit overwhelmed.  It is not easy to make hard decisions without feeling at peace about them. Now that they are all in agreement on the next steps, we feel much more confident in the way ahead.

While we wait to leave for Cincinnati, Zack has a lot of other things going on.  We are working hard with his dietitian and his GI doctor to get his g-tube feeds figured out.  Zack has started to gain back his weight now that he is actually getting enough calories each day.  Who knew?

Zack’s IEP team is working hard to get some much-needed testing accomplished.  This would have been done last year if Zack’s medical condition would have allowed him to actually be in school for more than half the year.

His Developmental Pediatrician has been working hard to get Zack’s ADHD medication figured out to help him focus better at school.  Both Z’s school and Developmental Pediatrician are working hard to get documentation together to help Zack qualify for assistive technology.  In English, they are trying to get Zack a computer for school so that he can type his work rather than write it out by hand.  While he “can” write legibly, it is a painfully slow and frustrating process (for Zack) which is unlikely to improve.  We are hopeful that he will qualify for this soon and believe that it will be a great tool to help him be successful in school.   Believe me, it is necessary!

We are now back to the waiting game. Waiting to see when we leave for Ohio.  Waiting to see if Zack’s stoma continues to cooperate (fingers crossed).  Waiting on school stuff. It may sound like a lot of waiting, but waiting means we are at home and home is good!

I leave you with Zack’s obligatory “First Day of Second Grade” picture.  Most of the mothers I know have cute little signs for their children to hold on the first day of school indicating what grade they are in, how old they are, what they want to be when they grow up, etc.  Not only are they cute and organized, they post these pictures on the actual first day of school.  Yes, well…tomorrow is the fourth week of school.  Zack is not holding a sign, BUT I took the picture on the first day and he is pretty cute.  Does that count?

IMG_6019

Since I am coming clean and confessing my good mom picture failure, you should know that this is my son Jake’s senior year.  I have a really cute photo of Jake on his first day of kindergarten that I wanted to post next to his first day of twelfth-grade photo.  Yeah, about that.  Can’t find it.  I’ve actually been looking.  It is causing me much distress.  Sigh.  Here is his “First Last Day of School” photo.IMG_6018Whew.  I am glad I got that off my mind.  I hope I have not scarred them for life, at least not over this.

Hug your babies!

~ Dawn

 

 

Zack and “The Wound”

Two weeks out from surgery and Zack feels “awesome”.  Those of you who know him recognize this as his usual response to the question, “How are you feeling, Zack?”  He very rarely deviates from this response and it always makes me smile.  I am blessed to have such a happy boy.

I do believe that Zack actually does feel awesome at the moment.  In fact, he seems to have been feeling noticeably better since his last surgery.  My theory is that he felt so bad before surgery because his colon was so large and not working.  Now that his colon is resting and he has a functioning, non-prolapsing stoma he feels like a new boy.

We are dealing with a few issues.  The biggest one at the moment is that part of his incision has separated.  I have been told this happens more frequently that people think and that these wounds require attention as they can become quite serious rather quickly.  We have met with Zack’s surgeon here and the wound ostomy nurses and come up with a plan for handling “The Wound”.

ervisit

Zack being brave getting his IV in the ER.  Doesn’t he look thrilled?

The hope is that it will heal from the inside out.  The problem is where it is located.  His incision is at the top of his stoma in an area that is normally covered by his wafer — the piece of the bag that sticks to his skin.  Pulling off sticky bandages from an open wound is not very conducive to healing.  To try to avoid that, we were cutting out a bit of the sticky part (wafer) to keep the adhesive off of it.  That allowed stool into the wound.  You can see how this was a bad combination.

Happily, people smarter than me came up with a much better plan.  I will tell you what we are doing, but it might bore you.  You can skip this paragraph if you would like.   First, we pour stoma powder into the wound and dab it with Cavilon skin barrier wipes to help seal the area.  Second,  we apply Aquacel Ag which is an antimicrobial dressing that has silver in it to help aid in healing the wound.  After that, we place a large piece of Duoderm over the whole area with a hole cut out for Zack’s stoma.  Over top of the Duoderm we use Eakin rings which are soft, moldable skin protectors.  They go around the base of his stoma adding another layer of leak proof protection for the wound.  Finally, we put his wafer over all of that and then attach his bag.

We were hoping that all of that would last for 48 hours, but sadly, we had quite the leak at 4 a.m.  I will spare you all of the details, but there was carpet steaming involved along with a shower and replacing all of wound care items mentioned above.  Tomorrow we will see our ostomy nurse and she will evaluate how well Zack is healing and adjust our plan accordingly.  We will get the weekend off and return again on Monday morning to do the same.  Hopefully by Monday we will be well on the way to healing that crazy wound.

Zack’s surgeon also talked to me about the dangers of an incision that has been weakened by multiple surgeries and/or wounds.  There is the danger of a parastomal hernia.  There is risk of obstruction.  The wound can get bigger and deeper.  Basically, fun things.  I used to just brush off risks of complications and not pay much attention to them, but I am now a seasoned complication mom and made sure to pay attention to what he was saying.  Maybe by paying attention Zack will avoid them this time. It is silly, I know, but if nurses and doctors can have their superstitions, I can have mine.  If only I believed in superstitions….which I do not.

Yesterday Zack and I also met with his GI doctor to talk about surgery and steroids and lots of other things.  We discussed the fact that Zack’s anastomosis was not revised as we initially thought it would be and how that makes it hard to determine whether or not the steroids were effective in helping calm his eosinophilic ganglionitis.  Our surgeon in Cincinnati was originally going to revise the anastomosis, but during surgery she could not find anything physically wrong with it and decided to leave it alone.  Her reasoning was that if we need to do a colectomy later, she wanted to leave as much of his remaining rectum as possible.  It made perfect sense at the time and still does.

The problem is that Z’s barium enema clearly shows an issue there.  Stool cannot pass from an area directly above that point in his colon.  Liquid can flow freely below that area indicating that there really is some issue at that spot.  Cincinnati believes the stool cannot pass because his colon is so large it just stopped working.  Because there is no motility, nothing can be pushed out.  That makes sense, kind of…but our GI’s point makes a lot of sense as well.  It is likely that Zack needs his colon removed, but what “if” this is the problem?

I felt so many conflicting emotions about this yesterday.  I respect Zack’s doctors very much.  I actually even really like them as people.  Are doctors really actual people? I know they all have the very best intentions and are doing what they feel is the very best thing for Zack.  I know his case is unique and that nobody really knows the issue.  As a parent, trying to sort it all out and make informed decisions for my child is grueling.  The “what if’s” feel like a heavy weight on my chest.  It might just be a mom thing.  I do not know.  Jim is great at making a decision and not looking back and questioning it.  I am a bit different.

Ultimately, Jim and I have to decide what we think is best for Zack.  We do not want to subject him to unnecessary surgery…he has had more than enough already.  We also do not want to miss something that might give his colon a chance to work.  If you have been following our story at all this might remind you a bit of the movie Groundhog Day starring Bill Murray. Believe me, it often feels that way to me.

Hopefully Zack’s new ileostomy will last longer than our record three months without significant issues.  As long as we can keep it working well, we can coast along for quite a while before making any other decisions.  My brain would really enjoy the rest!

Next week is an exciting week for Zack.  He is participating in the Maryland Special Olympics for his school.  I believe he is entered in the tennis ball throw and the 50 meter and 100 meter walk.  He was supposed to be in the run, but that darn wound is keeping him from that.  Zack is really looking forward to participating and to having his family there to cheer for him.  I am sure I will have lots of fun pictures!

Hug your babies!

~ Dawn