Surgery #10 Update – Home

We are home.  The end.

Just kidding.  I am serious about being home though.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Dawn

Healing – Two Weeks Post-op

Sometimes it is hard to gauge just how difficult surgery can be on Zack’s body.  He is usually cheerful and energetic.  This time our little monkey was acting better IN the hospital than at home. I think sometimes we underestimate pain control.  We have great pain control in the hospital, but at home we rely on Motrin and Tylenol.  Last week Zack could have used a little more help in the pain department.  His staples were really bothering him and his wafer would NOT stay on which caused his skin to hurt… a lot.  He was really just a mess.  Who can blame him?

This is how our guy looked for most of the week:

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There he sat, on the sofa, for hours a day.  Doesn’t he look pathetic?  He started to perk towards the end of the week, but only once his dad got home from work.

Because of our wafer issues, Zack’s surgeon took his staples out a few days earlier than planned.  THANK GOODNESS!  Getting the staples out helped Zack feel more comfortable moving around.  Our ostomy nurses helped me brainstorm new ways to keep that darn wafer stuck on his body and we finally found a winning combination of things that worked.

For those of you who know what the heck I’m talking about, we used gobs of stoma paste around the center of his wafer as well as lots on his staple line to fill in the gaps.  We kept Zack lying down for five minutes before allowing him to get up and then we put his tightest stoma belt on for a few hours to help the paste cement.  This combination of things allowed his wafer to stick for a whole day!  That meant Zack actually slept through the night.  Sleeping through the night has helped everyone have a better attitude, not just Zack. Not that I would ever be grumpy…..

I think we are now over the worst of the post-surgery yuck.  Zack has not been asking for pain medicine as often.  He has several good hours during the day where he plays pretty normally.  He does tire out pretty quickly, but we are only 14 days out from some pretty big surgery.

Zack is excited because he can now take an actual bath and go swimming again!  He is still restricted in his activities for another two weeks, but he was able to go swimming at his BFF’s pool today (Z seriously calls his buddy that). Getting back to normal is good for Zack’s spirits.

After swimming with is buddy, Zack came home and rested for a few hours before begging to go outside and play with the neighbors.  We live on a cul-de-sac that has about ten boys Zack’s age.  Today was one of the hottest days of the year.  Zack is at more of a risk for dehydration than other kids because of his high ostomy output.  So what did we decide?  We decided to let Zack off house arrest and play outside. Parenting at its best.  Feel free to take notes.

The kids in the neighborhood are all so protective of and kind to Zack.  They were playing a game they invented that was part lacrosse, part soccer.  Although the game looked really fun, it was definitely not on the approved activity list for Z.  The boys thought a little bit and then decided that Zack should be the referee and help keep time. Zack was thrilled!

Here is Zack giving the ready, set, play signal:

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After a few minutes of standing in the sun, Zack realized he needed a break and continued his job as an armchair referee:

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We are so glad that Zack was able to play today, but we are still super cautious about his activities.  Jim and I are worried about his new stoma.  There is a significant difference in the size of his stoma between lying down and standing up.  It is not yet prolapsing, but we do not think it will be long until we are back to that again.  Sigh.

Zack lost five pounds while in the hospital.  His cute little chub is gone and he is back to being pretty darn skinny.  He was 50 pounds when he was admitted and right now he is 45 pounds.  Happily, his appetite is starting to return.  We are also pushing the formula feeds at the moment to try to get him back to his 50 pound mark.  Our doctors tell us good nutrition helps aid healing and we are all about that!

We are still waiting for our phone conference with all of Zack’s doctors.  We have made our own “plan” for what we are going to do if it prolapses before we are able to talk to everyone.  Zack is currently scheduled for more testing at the end of August, you know, right when school starts… because that is how we do things around here.  Actually, to be fair, he was originally scheduled to have the tests the first week of August, but that had to be rescheduled due to his most recent surgery.  Jim and I are doubtful the stoma will hold on that long.  Hopefully we are wrong….

Hug your babies!

~ Dawn

Our week….

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

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

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

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

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

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

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

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

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

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

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

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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”.

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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

Good News and Ostomy Advice

photo (9)We are celebrating lots of things around here these days.  Today marks week number 3 since Zack was discharged from the hospital.  Yesterday Zack was released from the surgeon, again, hopefully for the last time until 2015.  After much work, Z gained 2.4 pounds and has actually tried some new fruits.  Last week Zachary attended 5 full days of school – in a row!  It feels like we are in the middle of a good dream, but it’s real which makes it even better.

That last paragraph was fun to write.  Only happy, exciting and fun facts were allowed.  Of course, we are still working hard to get our wafer to stick for more than 24 hours.  This post is giving me deja vu…that’s right, we went through this same issue last time…Happily, I have learned that each new ostomy is going to require some tweaking and the products we used last time might not be the right ones this time.  Sadly, I’m not that calm and objective about it at 2:30 in the morning…almost every night….since we came home…three weeks ago.  Sigh.

I just keep telling myself and Zack that at least we are home and not in the hospital.  We have a routine of sorts in place now.  When Zack wakes up, if he needs his bag emptied, I get up and empty it and he goes back to bed.  When he needs a wafer change in the middle of the night, Jim and I both get up.  Middle of the night changes always involve a mess.  Jim strips Z’s bed and gets the new sheets on, while I bathe Zack, attach the new wafer and snuggle him back to sleep.  This works well as this process usually takes an hour.  Fun, fun, fun!  I often feel as if I have a newborn again as I rejoice in getting more than 4 hours of continuous sleep.

In an attempt to write helpful facts about ostomies in case anyone ever reads this looking for advice (hey, it’s my blog and my dream…no laughing), let me tell you give you a glimpse into our wafer changing routine:

1.  Hollister adult wafer 14203 – I have to customize the cut as Zack’s mucus fistula is directly beside his stoma.  I cut this out before doing anything else.  Have I ever mentioned I’m not good with scissors?  That’s a story for another day….

2.  Apply stoma powder around the edge of Z’s stoma so that we have a mound of powder, but not on top of the fistula.  Pat down powder.

  • The stoma powder is new to us this time as Zack’s skin has been a bloody mess.  Because this is the second time this area was used for a stoma, the incision is actually outside of the stoma, not under it.  Stoma powder helps this area heal and I find it to be an amazing help.

3.  Apply ConvaTec No Sting Barrier Film.  We use two because after we apply the stoma powder in a perfect mound and apply the first skin barrier wipe all around the skin that will be covered by the wafer, Zack moves and our perfect mound disperses.  I fix it and apply another wipe and strongly suggest he not move…in a super sweet, loving voice.  Especially at 2:30 in the morning.

4.  Peel wafer and apply stoma paste.  I have forgotten this before in the middle of the night.  Zack always reminds me now because he knows if I forget this vital step we are doomed…doomed, I tell you!  Without the stoma paste we will not get more than 12 hours out of a wafer.

5.  Apply wafer, making sure to push firmly around the stoma and then peel the rest of the backing off making sure the fabric is smooth and without any bubbles.

6.  Attach Hollister bag 18193.  We have only forgotten to close the bottom of the bag once.  Don’t worry, you won’t make that mistake twice!

See, that doesn’t look hard!  Anyone could do this!  Why on earth it isn’t sticking was beyond me until yesterday when one of our dear ostomy nurses came to our rescue.  We’ve been seeing them for 4 months now and each time they come up with great advice I have never read or heard before.

We have always known that Zack’s output was too watery.  When he was obstructing, the doctors wanted it this way.  I’ve been told that the output should be thick, like yogurt.  I have yet to see that.  Zack takes a 2 mg. Imodium pill in the morning with breakfast and another at night with dinner to help thicken things up.  At times it appears to be working.  An hour later it may be completely watery again.  I have never really worried about this, because I did not see what difference it made and emptying a watery bag is so much easier than emptying a thick bag.

Yesterday the nurse told me that our main issue is the watery output.  When the output is watery like that and Z lies down, it flows back to the opening in the wafer and starts eating away the stoma paste and leaks through.

I think Oprah calls these revelations Aha Moments.  How simple is that?  It makes perfect sense.  I feel vindicated.  No longer is my wafer applying ability substandard.  I can blame it on the output.  Victory is mine…I mean Zack’s…because Zack is the one who has to deal with the sore skin.  Zack is the one who cries because he needs a new wafer.  I never cry…

How to thicken it up enough, but not too much, and get it to stay the right consistency is another story.  A story we will continue to work on with our GI doctor.  However, I did learn a secret.  Marshmallows.  Marshmallows will thicken the output.  I’m afraid to try this before talking to our doctor though.  I know it won’t cause an obstruction, but I’m a fraidy cat and am unwilling to take any chances without talking it through with our GI first.  If he gives us the ok, we are trying that trick for sure.  Come on!  What kid doesn’t like marshmallows?

Our nurse also told gave us a tip about removing the super goopy stoma paste.  Stoma paste will usually dissolve over time, so if you can actually get the blasted wafer to stick longer than a few hours, your wafer will come off smoothly, without issues.  When your wafer fails in less than 24 hours, you are left with a sticky, messy residue that leads to much frustration and many tears removing.  UNLESS you know the secret…Let it dry in the air for a time and it will peel right off.  Seriously?!?  Why did it take 4 months for me to learn this secret.  We have been having Z soak in the bath to help loosen the wafer.  This has been great, but when he gets out of the tub, the stoma paste is an awful mess.

The stoma paste removal has kept us up for hours before and caused much agony.  We tried the secret today and it worked!  Now we know the secret.  There should never be secrets in stoma world.  If you have a new ostomy, I hope you learn this before we did…you are welcome.

Before I end this post, let me be clear.  Things are getting better everyday.  We are no longer watching Zack every single moment, waiting for something else to happen that will take us back to the hospital.  Zack is back in school, our family is getting back into a routine, we actually eat at home again (Yay!), and Zack’s energy level is almost back to normal.  This wafer issue is an inconvenience to be sure, but in the scheme of things, this is such a minor thing.  Zack is home and healthy and our hearts are full.

A Series of Unfortunate Events

When my big boys were little, they loved A Series of Unfortunate Events  by Lemony Snicket.  I remember waiting for hours at a Barnes and Noble in California so that the boys could meet him and get his autograph.  This post has nothing to do with the book series or the author, other than the fun trip down memory lane it provided.  It does have everything to do with a crazy string of unfortunate events that have unfolded over that past few days around here.  Happily, my series of unfortunate events ends well.  I don’t want you to worry.

Where to start, where to start…let’s see.    A few days ago I decided that I would finally get to the grocery store and do a proper shopping.  We had been getting food piecemeal for over a week and it was time to actually make a list and get this house fully stocked again.  I had a list, I had a coupon (yes, just one..don’t judge), and I had a childless morning.  After carefully choosing my items, placing them all on the conveyor belt and helping the cashier bag them it was time to pay.  Can you see where this is going?

Sigh.  I did not have my wallet.  Seriously.  The cashier looked at me with an incredulous look and I began to sweat.  Where was my wallet?  There was a line of people waiting.  They were looking at me.  As luck would have it, the couple behind me in line were the kindest people ever.  They told me not to worry.  They were not in a hurry and then proceeded to tell me their own check-out horror story.  It really was worse than mine.  Is it wrong that I took pleasure in that?

The cashier called the manager who voided my transaction and put my cart in the cooler while I checked my car.  No wallet.  I called Jim in a panic.  I ran home and what did I see waiting for me?  My wallet.  In my attempt to be super organized, I had made a pile of all the items I would need for my shopping excursion.  My list, my coupon, my pen and my wallet.  Why I grabbed everything else is beyond me, but also very much like me.  Welcome to my world.  You’ll be happy to know I made it back to the store and purchased my items and my family can now eat healthy meals at home again.

Second in my line of unfortunate events happened during my shopping trip as well.  Zack’s school nurse called to let me know that one of his friends had accidentally swung his lunch box into Zack’s side.  The very spot where his second ostomy had been and is now healing from the inside out.  Zack was very upset and hard to console.  Zack told his nurse that his mama would know what to do and that he needed Motrin.  I had not yet brought the Motrin to school.  It was in my cart.  The nurse assured me that Zack was currently at the Media Center (it isn’t called a library anymore), and doing much better.  I told her I would be right over with the Motrin.  I wasn’t.

By the time I arrived at the school with the Motrin, about an hour had elapsed.  This turned out to be a blessing because Zack was fine at this point.   We have been having an issue with how this wound is healing.  Our ostomy nurses gave us some iodine based medicine to put on it to help, but it tends to make it itchy.  Zack has been complaining about it pretty consistently and that should have been enough to get me to pay more attention to it.  He doesn’t complain about things hurting unless they are really hurting.  We’ve been doing this long enough for me to have gotten a clue by now.  The lunch box incident was a blessing in disguise because it brought our attention back to the wound and helped us re-think how we were caring for it.  Hopefully it is on the right track now.  We’ll see in about 10 days at our next surgery check.

I’m not done with my tale yet.  Oh, no!  Early the next morning, at 2:30 a.m., Zack came into our room because his wafer had leaked and he and his bed were a frightful mess.  I’ve been learning that each ostomy is different.  This is our third and each time we have required a different wafer or powder or paste.  Our ostomy nurses gave us a new wafer in a convex shape with some seals called Eakin rings to try.  Sadly, they were not lasting more than about 12 -24 hours.  We went back to our old wafer, but kept the ostomy nurses great plan of mounding up the stoma powder over Zack’s oozy skin, pressing it down (gently), before using the skin barrier wipes and then we continued with our old routine.  It lasted almost 48 hours last time.  I can handle 48 hours.  Yay for no sleep and messy bags because inspiration came and we have a new workable plan.

Stick with me.  The next morning, at the same insanely early hour, Zack was back.  This time his bag was completely full of air.  It was ready to burst at any moment.  We went into my bathroom.  I thought the bag only contained air.  Our dog sleeps on our bathroom floor because he likes the cool tile.  He was directly in our path.  I decided that rather than try to climb over the sleeping dog, it would be easier to open the bag and deflate it right there, because it was only air after all.  Except it wasn’t only air.  The invisible to me contents of Zack’s bag burst forth with tremendous force all over Rugby, the dog, all over the bath mat, all over the tile, all over the child, but miraculously did not touch me.  If it wasn’t 2 a.m., it might have been funny, but I was tired.  My eyes were stinging and the humor of the situation was lost on me.

After cleaning everyone and everything up, I finally got Z settled back in bed.  The dog was blissfully sleeping on the newly cleaned floor, but man did he stink.  Since it was after 3 in the morning, I decided a dog bath could wait and headed back to bed.  You’ll be happy to know that Petsmart actually had an emergency opening just for Rugby and he is now all clean and smells fresh as…well, as clean as a dog can.

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The air in the bag scenario has happened a few times and this is also a blessing in disguise.  Because the air hurts Zack a lot, he has been asking for his “deep pain” medicine (narcotics).  Remember, he doesn’t complain unless it really hurts.  His “deep pain” has happened with two different kinds of food and has allowed us to track what he has eaten as well as the symptoms.  We are starting to really pay attention to his food intake as we believe there is some connection to food and his motility.  I don’t know if his doctors do, but we shall see.

There you have it.  My very own Series of Unfortunate Events.  My story, however, ends happily.  Zack is doing well.  He is back at school and his teachers have told me that he is almost all caught up from all the work he has missed.  He is not happy that he cannot participate in PE yet, but I take that as a good sign as well.

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I leave you today with a shout out to my son, Jake.  Yesterday was his 16th birthday.  Jake is an amazing big brother to Zack.  Jake loves to share music with Zack and the two of them can often be found listening to Jake’s music in the basement.  Zack also likes to watch Jake practice his piano and guitar and frequently gets his own guitar out so he can play along as well.  Happy Birthday, Jake!  Thanks for being such a good big brother!

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Life At Home

Some interesting (to me) statistics about Zack’s hospital stay.

  • Number of nurses and medics who cared for Zack on the Pediatric Ward: 22
  • Number of Ward doctors: 4
  • Number of Surgeons: 2 – but only one operated on Z.
  • Number of Surgical Residents: A lot, but 3 main ones.
  • Number of Surgeon of the Day (Came at night when we had issues, which was a lot) care givers: 3
  • Number of PICU nurses: 10
  • 1 Main PICU physician, 2 PICU Physician Assistants and 1 Resident.
  • Number of GI Doctors caring for Zack: 5…saw 3 most days.
  • Number of Anesthesiologists:  5
  • Number of People on PICC Line/Pediatric Sedation team: 4
  • Number of Radiologists: Not sure, but we had a LOT of xrays and one CT scan.
  • Ostomy Nurses: 2
  • Other Health Care Professionals Z saw most days: Inpatient Dietitian, Child Life Specialist and Social Worker.

I find this interesting because it took a lot of people to help Zack get better.  We are super thankful for all of them.  I’m sure there were more that I just can’t think of at the moment.  It also leads into my story of being home and what that looks like.

We have been home for 5 days.  It has been both wonderful and super hard.  We were well prepared to come home.  Our doctors and surgeons and ostomy nurses trained us well.  We felt confident it would be pretty simple to keep up with all that needed to be done.  We couldn’t wait to get home and sleep in our own beds, eat our own food, shower in our own shower, you get the idea.

The drive home was great.  When we got home, Zack had bled through his staples and soaked the bandage.  His bag had leaked and stool was everywhere.  His fistula stoma on the right side of his abdomen was irritated and bloody as well.  Welcome home!

Luckily, I was able to get in touch with the Pediatric Ward and one of my favorite nurses answered.  I was able to send a photo of the blood and she was able to help me get the situation under control.  Have I told you how wonderful the Pediatric Ward 3W at Walter Reed is yet?

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You may be wondering what our first few days were actually like.  Let me start by telling you that Zack’s case has not been “typical”.  His body has not responded as expected along the way.  Things have been a little frustrating.  That being said, I think there are probably some lessons for other families that would be helpful.

First, new ileostomies are time consuming.  We are still measuring output for our doctors and ourselves so that we know what is normal for Zack.  This means when the bag is ready to be emptied we measure the “contents” into a urinal and record the amount.  Zack then needs to be cleaned up.  This is pretty easy and just involves wiping the mouth of the bag out with a wipe….as long as there isn’t a leakage issue.  Sometimes we have to flush the bag out as well with a big syringe and water and this adds a couple of minutes to the routine.  Luckily, this can just be emptied directly into the toilet and then we wipe the mouth of the bag and we are done.  Don’t forget we still need to empty the urinal, clean the urinal and wash our hands.

I suspect that once we are done measuring output, this time will be drastically reduced.  We are getting pretty good at emptying the bag and wiping it out.  Once that darn urinal is gone, I think this part of caring for an ostomy will be the same as any other potty break.  I hope.

A bigger issue for us is that the appliances we are using for Zack are not sticking well to his skin.  He currently uses the Hollister Pouchkins two-piece bag and wafer.

 

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Our ostomy nurse has told us that we should expect to get 3-5 days from this appliance.  We are lucky to get 24 hours.  That is super frustrating.

Taking an old appliance off and putting a new one on takes time.  Especially if it is new to you.  Today it took an hour and a half.  Granted, some of that time was also taking care of other wound care, but come on!  That is a long time.  Especially to have it fail in less than 24 hours.  Add to that the fact that it is not a comfortable thing to do.  It is incredibly sticky and takes lots of adhesive remover to take off.  Then we have to wash the skin, but only with Johnson’s baby wash, and let it dry completely.  After that, skin barrier wipes are used to help the new adhesive stick and they have to dry.  Then we warm up the wafer and attach.  Zack’s skin is still sore from having the last one removed the day before and is now red and irritated….and so is he!  Here is a look at our operating room.  We set it up every day:

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I know you are jealous of how fancy it is!

Here’s a look at the supplies needed to change Zack’s ostomy appliance as well as the supplies for wound care.  The Motrin is added because Zack knows it will hurt and so he asks for it before we begin:

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We are lucky to have an awesome set of ostomy nurses at Walter Reed.  They have been working hard to help us find a solution to the problem.  They are also good at helping me feel like I know what I am doing and keeping me sane.  Mostly.

When an ostomy appliance fails, it isn’t a pretty thing.  If it fails at night while your mom and dad sleep, you will be covered in a mess by morning.  Now not only does the ostomy need attending, so does your bedding and your jammies and….Thank goodness for the air-freshner we got from the hospital.  I need to google the stuff and buy more.  If you add in a bunch of staples in your abdomen and a fistula and stitches on your right side, there is a lot that needs to be kept clean.  We have more bandages and tape and scissors than you can imagine.

I realize that this sounds like a lot of complaining.  I’m just trying to keep it real.  This is what it takes to do life at the moment.  At the hospital we had over 15 people a day at our personal beck and call.  If Zack wouldn’t drink his Pediasure, something else was found.  Bandage didn’t work, the ostomy nurse was on it.  Blood oozing out of staples, surgeon was on it.  Need a diversion to keep his mind off how much time was left until pain medicine, the Social Worker came to play.  At home, we have to figure out what is OK and what needs attention.  Do we take him back in?  Will the stool on his staples cause an infection?  How do we wash those if they can’t get wet?  Is he getting enough fluid?

Jim keeps reminding me that we are smart.  We are doing the best we can and we will figure it out.  He is right of course.  It will just take time.  It’s only been 5 days.

Lest I leave you feeling sorry for us,  yesterday was a great day.  Zack had his PICC Line removed after his blood work was checked.  No more heparin flushes at home!  It seems like we have been doing a good job of watching his fluid intake.  His surgeon said we might be doing “too good” a job as his sodium level was a little low.  I find that hard to believe with the amount of Gatorade that boy has been drinking.  Zack also got his staples removed and his stitches out.   We still have some wound care to do each day, but we are getting closer to only having to worry about Zack’s stoma and fistula.  Actually, a fistula is a kind of stoma, but for our purposes we call the ileostomy Zack’s stoma and the other one his fistula.

To celebrate, we went to see Monsters University.  Historically, Zack does not do well in movie theaters.  It’s hard for a guy to sit still that long.  It’s hard to pay attention for that long.  Yesterday he sat and watched and giggled and was happy for the entire movie.  It was such a blessing to see him so happy and excited.  So, one baby step at a time.  One day we hope this will be second nature.  For now, we will rejoice in the fact that Zack is getting better and most importantly, that Zack is home.

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Dawn

He’s Home!

It’s July.  It’s a new month.  Last month was not fun, but it’s over and time to move on to bigger and better things.  Before I tell you all about our first days, I want to make sure to thank all of you.  Thank you for your prayers for Zack and our family.  We have been told of people praying for us all over the world and we are humbled.  Thank you for the gifts, the meals, the visits, the cards, and the phone calls.  They helped make a hard month a little easier.

On Friday, Zack’s surgeon came in and saw us and asked if we wanted to go home.  Um, yes please.  But, there was one problem.  Jim and Jake were on their way to a concert.  Not just any concert, but Jake’s most favorite group in the whole world’s concert.  We had promised that nothing would stop him from going.  There was no way we were going to make him miss the concert after missing all of his end of the year activities, not being home to help him prepare for his auditions for two school plays, and generally making him fend for himself for the better part of the month.

Happily, Aunt Becky came to the rescue.  Zack likes to say that Aunt Becky saved us from the hospital.  We didn’t have to hitchhike home from Walter Reed and we got to leave a day early!  Of course, we had to buy another car seat (we already have two), but it was totally worth the $50…..WooHoo!!

On our way!!

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When we got home, Zack was surprised by Jake and his friends.  They had decorated to welcome him home.

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Zack got a much needed haircut on Saturday and we were able to eat outside in the real air and everything!  We will not be taking fresh air for granted anytime soon.  Even the muggy, thick, Maryland fresh air we have around here.  It beats inside air any day.

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Happy Daddy, Happy Z.

 

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Jake surprised Zack with some silly string.  Getting a little crazy around here!

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Tomorrow I’ll post about how the first few days at home have been.  I’ll let you know that the amount of wound care has been a bit of a challenge and frustrating, but we are dealing….for now.  It is true, there’s no place like home!!

Dawn