Surgery #10 Update – Home

We are home.  The end.

Just kidding.  I am serious about being home though.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Dawn

And Now We Wait….

Today was a long day.  Jim and I woke at 4:30 to get ready for our day.  We woke Zack up at the last-minute so that there was a chance he might actually fall back to sleep in the car.  Sadly, his wafer was leaking and we had to scramble to slap a new one on as fast as we could at 5 a.m., hop in the car, and pray we did not encounter any traffic delays on this rainy morning.  I am happy to say that the traffic was good, Zack snoozed a little, and we made it on time.

When we arrived, Zack walked into the building without a fuss.  He did need to take a few “breaks” to “rest”.  He started to get a little bit antsy as we walked down the final hallway.  He was dragging his feet (literally) and requiring a bit of cajoling, but then he saw our social worker waiting at the end of the hallway.  Ms. S told Zack she had a surprise for him and that helped him forget that he was scared.

The APU (Ambulatory Procedures Unit) was ready for Zack and had been told about his anxiety issues.  In the past when Zack has been in this unit, he has been given a chair-bed in a semi-open bay with a curtain for privacy.  This time, he was given his own room.  I was relieved and impressed as I did not know those were even an option.  The room looked similar to the rooms Zack is used to on the pediatric ward and I think it helped him feel more at ease.  As we were getting settled, Ms. S gave Zack the surprise – Night Vision Goggles!  He was pretty excited!  They started our day off right and were lots of fun.

Turning off all the lights to try out the night vision goggles.

Zack did a good job of letting the doctors know that he wanted us to speak about him outside of his room.  I was proud of him for being able to express himself so well.  When anesthesia came, I was happy to see that we were assigned a doctor who has worked with Zack many times.  He arranged to have Zack sedated in his room and taken to the procedure room on a gurney.  Zack was not happy when the doctor came into the room and we told him we needed his PICC line to give him some Versed.  He fought us for about a minute as the medicine went into his line and then went out pretty fast.  The doctor quickly got him on the gurney and hooked up to leads and oxygen and off we went.

Things went well during Zack’s procedures.  The PICC team decided that they wanted to put a completely new line in his other arm.  They felt that his original one had been in place long enough and the risk of infection warranted a new site.  Because his scopes were being done on his intestines, the PICC line was changed first as it needed to be a sterile procedure and intestines are most certainly not sterile.

After the PICC placement, Zack had his scopes.  The original plan was for Zack to have an upper endoscopy with biopsies, a pancreatic stimulation test, and biopsies taken through his ileostomy.  The doctors decided that since he was already sedated they wanted to look at his colon as well.

The main reason for these scopes was to try to see if the doctors can narrow down the reason for Zack’s high output and sodium loss.  They tested to see if Zack has a disaccharidase deficiency.  I believe that disaccharidases are enzymes that break down complex sugars into simple sugars so that the intestine can absorb the nutrients.

In addition, the team took some biopsies to look at his cells under great magnification called electron microscopy in both his duodenum and ileum.  This is a type of microscope that uses a beam of electrons to create an image of the specimen. It is capable of much higher magnifications than a regular microscope and allows very small objects to be seen in finer detail. They looked at his esophagus, stomach, duodenum and ileum.

Next, they performed the pancreatic stimulation test.  This test was done to see if Zack’s pancreas is working properly.  Somewhere in the midst of all of this, they checked his electrolytes in both his blood and urine.  I am happy to report that his sodium level is holding steady.  His urine sodium is low, but detectable for the third straight week.  That makes me happy because it takes a LOT of effort to make this happen.  They also took blood to test for something called CDG or Congenital Diseases of Glycosylation.  We will add all of the tests taken today to the list of over 30 other things he has been tested for these past few months.

Zack did well through all the testing.  The doctor reported that everything looked normal. That is the way things go for Zack.  Things always look great internally, but clearly there is something wrong.

When Zack got to the recovery room his nurse noticed that he was having PVC’s (premature ventricular contractions) on his heart monitor.  Nobody seemed overly concerned, but in all of our time in the hospital, we had yet to see that.  I asked why that might be happening and one explanation offered was dehydration.  We asked to see what his blood work showed and saw that his electrolytes were great.  When Zack changed positions, the PVC’s stopped.  People then began to wonder if his PICC was in the correct spot.  An X-Ray showed all was well.  The PICC team said it could be that in the position Zack was in the tip of the PICC could have been touching the top of his heart and that can cause PVC’s.  Once we were home, our nurse called to say that radiology reviewed the film and wanted his PICC pulled back 1 cm.  Our home health nurse will come tomorrow to change Zack’s dressing and adjust the line.  Hopefully, that will take care of the issue.  I doubt we would be able to tell either way, but I think I will feel better knowing it was done.

Once we were discharged, Zack was very excited and chatty.  He told us in a very excited voice that he was “so happy that my procedure is done”.  He was visibly relieved.  As he went to bed this evening we were able to talk about all of the things he did to help calm himself.  We talked about how proud we were of the way he conducted himself.  I hope that one day this will translate to all of his hospital experiences.

IMG_5459 (1)

One relieved boy.

So now we wait, again.  We are getting pretty good at that.  Most of the tests performed today will take one week or more to complete.  The majority of the results from previous tests, with a few exceptions, have come up negative or normal.  Although this can be frustrating, each bit of information helps the doctors revise Zack’s treatment plan and get one step closer to figuring this thing out.  Patience….

~ Dawn

Procedure Time Again

Tomorrow morning Zack will head back to the OR for a few minor procedures.  As you know, Z is not a fan of anesthesia and has already begun to work himself up.  He has been telling me that he is not brave enough and that he does not want to “do this again”.  I can’t really blame him.

Zack has been working for some time with our hospital social worker on his medical anxiety issues.  During his last hospital stay he was able to verbalize how he was feeling and things went pretty well.  Tomorrow Ms. S will meet us at the hospital to help Zack get through the day.

Zack’s procedures should not take too terribly long and we anticipate being home by early afternoon.  General anesthesia makes him a bit loopy and wobbly, so he will be hanging out at home on the sofa for the rest of the day.

I am planning to update the blog tomorrow with more details.  For now, we appreciate prayers for Zack and his anxiety.  A peaceful morning for him would be awesome!

~ Dawn

Zachary’s Tune Up

Remember my last post?  You know, the one where I talked all about Zack having a good day?  Do you remember how I wrote about Zack eating a turkey sandwich and loving it, but then having some pain?  Yes, well….it did not end well.

Zwr8This is Zack on Monday afternoon.  This is Zack Monday evening and Tuesday morning and Tuesday evening.  I bet you are getting the idea.  To make things more fun there was vomiting and blood.  Oh, did I forget to mention that Daddy was in Germany?  We know how to do fun around here.

Happily, Zack’s GI and I talked and decided it was time to admit Zack for a tune-up.  After 5 1/2 weeks of not feeling well, we were getting worn down by the daily pain and the bleeding and the lethargy.  I was actually really relieved that Zack was going back to the hospital and hoped that we would be able to figure out what was going on with our guy.

We learned that Zack’s iron levels were pretty low, so he received an iron infusion of Dextran.  We were told this drug would help improve his iron levels in a few days and his lips are actually almost pink again.

As I have mentioned before, Zack’s nutritional status….well…it was/is stinky.  Zack had an NG tube inserted so that he could receive enteral feedings.  That made him sad, but I think he has become resigned to the fact that he needs the tube to feel better.

Today Zack had a scope under sedation to see if the doctors could figure out why he keeps bleeding.  I told his doctors that I was praying that they would find something and I was not lying.  It has been frustrating watching Zack in pain for so long.  It has been hard to see him like that and to know something is wrong, but not to know what “it” is or how to make him feel better.  I found myself feeling anxious that Zack would have the scope and the doctors would not find the source of the blood.

Happily, they found something.  I realize that sounds a bit crazy, but honestly, I was so relieved that there was a reason for some of Zack’s symptoms.  I have not had time to research or ask questions or anything, so here is the very little bit I know.  The site of Zack’s rectal anastomosis (reattachment) has developed a stricture.  In English, his reattachment site has narrowed.  Instead of being a big circular pipe, it has now constricted and become a little pipe.  This makes getting stool through problematic.  It is also irritated and bleeds easily.

The part I do not know is what the heck we will do about it.  Zack’s doctors here and his surgeon in Cincinnati will come up with a plan soon.  I do know that treatment will most likely involve dilation of the area with balloons of some sort.  This procedure will require sedation, but most likely not surgery.

Zachary is not handling sedation well at the moment.  He gets very upset and starts hitting, kicking, biting and screaming.  It is very overwhelming to him and to me and it makes me very sad.  I asked him about his behavior after his procedure today and he told me that the sleepy juice makes him feel funny and he does not like it.  I cannot say that I blame him, but his behavior is out-of-control and Jim and I are struggling with how to help him.

Speaking of Jim, Zack’s day was made ten thousand times better when his sidekick came straight from the plane to see his boy.  Zack informed me that I should head home because “Robin” was back.  Zack is Batman after all.  I was worried “Robin” might be exhausted by the time change and plane ride, but he reassured me he was ready to spend time with his boy.

I hurried home in the pouring rain….or crawled home at 40 mph…you decide.  When I got home, Jake Penrod had the entire house cleaned.  My floors were vacuumed, the dishes were done and the yard was mowed.  I mean, come on!  How great is that?  So, thank you, Jake.  You made your tired mama proud.

One last thing…tonight is my first night home since last Wednesday.  My computer was not able to find the wireless connection at Walter Reed.  My sisters gave me a lot of technical mumbo jumbo as to why, but I heard blah, blah, blah.  All I know is that I cannot write any blog updates while we are at the hospital unless I want to try to write them on my tablet.  That will never happen.  Now that Jim is back and we are back to our alternating night schedule, things should get back to normal.  Hopefully, Zack will only be at the hospital until Friday.  Fingers crossed!

I am off to my comfy bed to get some good sleep.  But first, I’ll leave you with some pictures of our stay so far:


Zack and Jake reenacting a scene from Star Wars


The Hero


Big Brother soothing his buddy.


Super Heroes


Zack and Aslan the Leonberger Puppy

Things Are Looking Up!

There he is… guy.  I wanted to say he was happy, but he is a bit sore after his procedure.  Look at his face.  He isn’t unhappy, I guess he is just “uncomfortable”.  If you saw what they did to his intestines it would make you uncomfortable as well.

The GI Team actually did the roto-rooter deal.  They took a spaghetti scope and inserted it into Zack’s ostomy.  The camera allowed them to inspect his small intestines.  They advanced the camera slowly and about 18 cm into the small intestines they found a spot where a turn in the intestines was constricted. The explanation I understood was that the intestines are so dilated that they are pressing on this turn and sort of flattening the turn and thus not allowing the fluid to flow freely past.  Got it?  Whew.

The surgeon then took over and “invented” a stent from an NG tube that had holes in it.  They then inserted the NG tube in with the scope past the blockage up to about 35 cm.  Then they turned on the suction to make sure it worked and it did.  The hope is that gravity will pull the fluid out of his intestines into that tube and out into a bag outside of his ostomy bag, under his bed.  Wow.  That sounds confusing.  Let me add a few pictures to help me describe this crazy deal.  If you are squeamish, skip right on over these few photos:

Z’s ostomy bag with tube coming out of the lower portion:

By the way, this is an adult collection bag to accomodate the amount of tubing coming from the site.

Next photo is the bag coming from his body to the edge of the bed:

Finally, the collection bag under his bed:

Not all of the fluid will be collected by this tube.  It is hoped that the remaining fluid will follow the tube and come out into the ostomy collection bag attached to his body.  We hope to keep the tube in for 24-48 hours.  The doctors think Z’s body will probably push the tube out over time.  We also hope the swelling of the intestines will diminish allowing the constricted turn to open up and drain on its own.

Now the if’s…

1.  If the drain stays in and drains properly, we will disconnect it in 24-48 hours and see if his body can work on its own.  If so, yay…we can go home early next week.

2.  If the drain stays in and drains properly and is disconnected and does NOT work properly, we will go back to draining his ostomy manually.  Jim and I will be taught how to do this until his body can do it on its own.  Joy.  BUT we could still go home :).

3.  If the drain does not drain properly, Jim and I will be taught to drain it and can go home early next week if everything else remains the same.  If his body does not begin to work, we will continue draining the ostomy until his body is healed enough to perform another surgery in the near future.

As you can see, most of these options include us coming home sometime next week.  I am afraid to type this…..I hope it is really true…..

Another exciting thing for Z is that his NG tube was removed.  Most of the fluid was making its way down the intestines away from the NG tube, we weren’t getting much waste from that.  Zack has been so brave and strong through all of this and rarely cries.  Having his NG tube messed with sets him over the edge.  Having it out was a big deal for him and that makes me happy.  If all goes well tonight, Zack might get to have a drink tomorrow.  He’s already planned it out and has decided his first drink will be apple juice.  Sounds wonderful.

Zack would like to post a picture of his crayons.  So here you are:

photo (26)

Overall, a very good day indeed.  We needed that!