Thrive Camp

Here in Maryland, summer traditionally means camp for kids.  Most of Zack’s friends attend day camps of some sort.  Zack has never attended anything more than a part day VBS and then only at our church where people are very aware of his needs and I am close by.  I am not aware of many camps (other than ostomy camp) where there is staff to help someone empty their ostomy bag, give medication, and to help change wafers.  Add in his learning disabilities and camp seems pretty out of reach.  I have been waiting for the day when Zack asks if he can go, but thankfully that day has not yet arrived.

Sometimes life gives you gifts you did not even know you needed.  A few weeks ago, we were delighted and excited to receive an email inviting Zack to a special camp at our new church called Thrive Camp.  Our church has a pretty amazing ministry for middle school, high school and young adults with special needs.  The younger kids are always welcome, but there is not a specific program just for them. Thrive Camp was developed just for this age group and included siblings as well.

Words can never convey just how wonderful this week was.  I was able to meet other moms like me.  I have lots of friends and almost all of them love my boy.  But only a very few understand life with a child with special needs.  I get that and do not expect others to be able to grasp our life.  However, making new friends who understand our challenges was like receiving a special gift.  I thought the camp was just what Zack needed.  Turns out, I needed it too!

The organizers of the camp thought of every little detail. Every dietary need was considered.  Every medical need was addressed and there was a nurse available at all times.  You know that made my day.  Not many people really want to deal with intestines…

Camp was run a bit like VBS in the morning with a fun field trip in the afternoon.  On the first day, the kids went to Meadow Creek Farm and Calm Acres.  This farm is run by a lady with the biggest heart for people of all ages with disabilities.  The kids had a picnic and hiked on a trail full of hidden wind chimes and swings.  The highlight of the afternoon, however, was being able to paint on actual horses.  In a million years I would never have thought to do that!  I am so glad that God made so many creative and compassionate people!  Check out these pictures.

Zack admiring the horse he helped to paint.

Come on!  How cool is that?

The next day, the kids went bowling in the afternoon.  Maybe it was all of those winters spent in cold climates like Montana and North Dakota that started our fascination with the sport, but all of my kids love to bowl.  Zack had so much fun and could not wait to tell me how he did not have to wear those uncomfortable bowling shoes, that he was able to use the ten pound ball and, most importantly, he was able to have pizza and a fountain drink of lemonade.  What more could a child ask for?

Friday saw the group headed to Spring Meadow Farm where they learned how soft serve ice-cream and Sno Balls were made.  In addition, there was a scavenger hunt, a petting zoo and the farmer let them plant their very own sunflowers.  Zack cannot have ice-cream because it makes his belly hurt like crazy.  While all of the other kids got to have ice-cream, the staff let Zack make his own Sno Ball with all of the orange syrup his heart desired.  I think he will be talking about using the machine to crush the ice for a long time!

On Saturday, a sweet family invited all of the campers and their families over for a BBQ and swimming.  It was a fun afternoon and Jim was able to connect with some of the dads.  That made me happy.

The hardest and best part of the week for me was watching Zack.  He was happy (best).  He was free to be exactly how God made him without his mama telling him to sit still, to look people in the eye when talking, or to change this behavior or to a more appropriate one (best).  Not being neurotypical, learning all the social cues in life is pretty exhausting and just being able to be himself and to be loved on just as he is brought such joy to my heart.  It was hard because I realized how many times we try to change his behavior to help him fit in (which is necessary at times) and how difficult that must be for him.  It’s like asking an introvert to behave like an extrovert.  They can act like that for a while, but it is very tiring.  It was also hard because I realized that he actually fit in really well at camp.  Let me explain….

For years people had been telling us that Zack would catch up.  That he would behave more like his peers naturally.  Obviously Jim and I realized that there was something different, but other than his chromosomal abnormality which nobody can really explain the significance of, his diagnosis has been elusive.  It was easy to buy into his differences being due to his years of being sick and not having the opportunity to learn the same social things as his peers.  That his ADHD would get under control and he would become more attentive like his peers.  That he would run and play naturally with his friends .  He’s ten years old now, and the differences are not going away.  Things are still hard for him. Although he will always tell you he is awesome, he is different from his peers.  Seeing Zack at camp with other kids who are not typical just reinforced the fact that he really belonged there.  It was a perfect fit.  He loved it and had so much fun. I am so glad that we were able to see this in a place that made him so happy.

Medically, Zack is the same.  He is prolapsing several times a month.  Recently he had a particularly painful one that kept him on the sofa for three hours.  Though it was super painful for him, it was a good reminder of how far we have come.  Currently, Zack only prolapses a few times a month (any prolapsing stinks if it is happening to you). There was a time when he prolapsed daily and was in constant pain.  While our preference would be that he not prolapse at all, 2-4 times a month is definitely better.  His stoma continues to be very swollen a lot of the time which also hurts.  In addition, he continues to have periods of obstructed output.  This past week he went seven and a half hours without a drop out.  He was crabby and irritable, but once his output started back up he was back to his happy self.  His output continues to be high.  Do I sound like a broken record?  I feel like one.  BUT no hospitalizations, so we are grateful.

I have so much more I could write about, but for some reason this post has taken forever to write.  I think I’ll save the rest for another day.  Until then, enjoy this last picture of Zack lovin’ camp!

Hug your babies!

~ Dawn

And Carie S. …….you are welcome…..

 

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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

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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Easy Is Boring….

Ostomy appliances stink.  At least for us.  We can’t get them to stick to save our lives.  Neither can our ostomy nurses.  Neither can the companies who send us samples and give us advice.  We have lots of supplies.  We have glue, paste, tape, powder…You name it, we have it.  I know we will find the right combination eventually.  We are always up for a good challenge around here.

Zack, the only one who really has any right to complain, is pretty “chill” about the whole thing.  He does say, “I’m really angry at that wafer!”  Who can blame him?  Another cute quote, “Come on wafer! Please be my friend!”  He is learning to be a great helper opening supplies and handing them to me as needed.  His attitude is amazing and I could learn a few lessons from him.

I’ve learned a lot about Zack this summer.  First, he is funny.  Really.  He has a great sense of humor and likes to make people laugh.  When he finds something funny, he gets the belly giggles and cannot stop.  It’s pretty fun to watch.  Second, he has such a kind heart.  He really likes people and wants to be their friend.  Third, Zack is a strong and brave boy.  He understands that we are doing these things to help him and he puts up with a lot.  He is even getting braver getting his blood drawn.  Once his PICC line was out and he had to have it drawn with a real needle, it took 3 grown men and me to hold him down.  Last week he was bragging that it only took 2 men to help him.  This week he says he’ll only need his daddy.  I love that boy.

Zack’s labs have shown that his sodium is low.  There is also some concern about his magnesium and potassium levels.  I think potassium is high, but I get confused.  At any rate, his sodium level was undetectable in his urine this week.  That is bad.  So, I have to add a tsp. of salt over the course of the day to his food.  That doesn’t sound like much until you actually put it on/in food.  You only need a little to make things taste funky.

We are also having issues getting the boy to eat real food. Zack has always had food “issues”.  His facial muscles have always been very weak and for the first three years of his life he couldn’t chew properly.  As a result, he only ate soft foods.  We had an oral motor specialist working with him and a feeding therapist to help him overcome his food aversions.  It worked, but we were still pretty limited in foods he would actually eat.  Add in not eating any solid food for a month you can imagine the fun we are having around here. It’s a real party.

Given how hungry Zack is, I also like to think of it as an opportunity to start over.  It seems easy in my mind, he’s hungry, he’ll eat….in my perfect universe.

This is how it actually goes down.  Zack is super hungry.  I give him a piece of peanut butter toast.  He takes a bite and is done.  Seriously. So. Frustrating!

Take a look at our fun morning.

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He is saying, “I’m so hungry!”  The toast is right in front of him.  He’s had two bites.  Sigh.  He is being supplemented with Ensure Clear twice a day as well as with Carnation Instant Breakfast twice per day to make sure he is getting enough nutrients, but he needs solid food.

Yesterday when I spoke to his GI doctor, he asked what Zack wanted to eat.  If you ask Zack, he would answer, “McDonald’s!”  I don’t like him to eat there, but his doctor said it would be ok to go to McDonald’s and eat a high calorie, high salt meal.  McDonald’s Chicken McNuggets and processed turkey are the only “meat” the child will eat.  I’ve been trying to keep him away from junk.  The truth is that he really needs to eat and get more calories, so off we went.  Compare this photo to the one above:

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Like I said, it’s a real party around here.  Nobody said parenting was easy!

We also discussed the results of Zack’s intestinal biopsy.  It seems that something was found.  I would love to tell you the actual name.  I have an idea of what it is, but we were at physical therapy when I got the call and I didn’t have the presence of mind to ask how to spell it.  It could be eosinophilic ganglionitis.  I’m not sure.  Ganglionitis is in the name and there is a word at the beginning that starts with an E….At any rate, it is not a common finding.  Imagine that!

Z’s doctor also said it is an interesting finding, but that it is never good to be “interesting” in medicine.  That made me laugh. He also said, bless him, that he doesn’t know if it is an accurate diagnosis.  The section of intestine they biopsied was taken out because it was in such bad shape.  It was the section that was drained each day with a big rubber tube.  It had fluid just sitting in it and was super distended.  All of those things could have created the finding rather than being a true finding.   I don’t know if that makes sense to someone reading this, but it makes sense to me and it is what we hope.

The game plan from here is for our doctor and the other GI doctors to research the finding, see what they think and go from there.  If it is a true finding, there are things that can be done to help Zack.  Since I’m totally guessing on the name, what it means and what will happen, that’s all I’m going to write about it until we have more information.  I did tell the doctor that I feel both vindicated that something was found because my mom radar just felt something else was going on and also like I wanted to vomit.  That’s the way it works in my brain.  Welcome to my crazy life.

On a completely different and random note….I learned how to embed a youtube video today.  I know you are thinking, huh?  Computers are hard for me.  I have not needed to do much with computers.  When I have had to do something,  my very talented family (husband, sons and sisters) usually do it and let me take the credit.  This blog is all mine, baby.  I’m pretty excited to figure anything out.  One small step for you, one giant step for Dawn.  I was actually able to fix my last post so you can actually see the video.  Yay me!

Now if I could only figure out how to get my signature block to work I’d be feeling pretty smug.  For now, I’ll just have to remain humble and type my name in the usual boring way.

Dawn

There’s No Crying In Ostomy….Or Is There?

It’s 12:18 a.m.  I just put my baby to sleep.  Why is that you ask?  Because we just finished changing our ostomy appliance for the third time today.  Yep.  It’s all kinds of fun around here.

Z woke up this morning with a wafer we had placed last night.  It looked pretty good until he moved.  That’s all I’ll say about that.  You are welcome.  I decided to put a one-piece bag on as we were on our way to Walter Reed to see our favorite ostomy nurses.  I didn’t want it too secure as I knew we were going to be trying out a new product to see if we can get more life out of them.

Our nurse had some new bags and wafers to try from Coloplast this time.  They looked promising, but I dislike that they have a closing device that looks like a chip clip….you know, like you would use to keep a bag of chips fresh.  I just can’t see how sleeping with that would be comfortable.  Since our current Hollister ones keep leaking, I was willing to give it a shot.  Actually, to be more accurate, the wafer ripples and then stool tunnels through.  The nurse and I got the new appliance on and off we went.  It lasted until 9 tonight.  That’s 7 hours.  What the heck?

Wafers are supposed to last 3-5 days.  We got 48 hours over the weekend and did a happy dance.  There was no dancing tonight.  There was muttering under my breath, tears by Z and by me, Skyping with big brother in Colorado as a diversion and Cut The Rope with our other big brother while mama worked hard to get the stoma paste off.

Stoma paste is applied on the edge of the wafer closest to the stoma to add another barrier against leakage and to help seal everything.  When it hasn’t been allowed to set for 24 hours it is extremely hard to get off and this causes lots of irritation to the skin.  We started working on it at 9:30.  Late to be sure, but it’s summer and our Mustang arrived today….We finished at midnight.  It has never taken us this long, but we could not get that paste off.

Zack is NOT a fan of wafer changes.  Who can blame him?  It’s like having a big gooey bandage ripped off your stomach, even when we use adhesive remover.  Add in the crazy stoma paste that will not come off and you have an explosive situation on your hands.

Once we finally got the goop off, we had to wash his skin to get all the adhesive remover off.  Think goo gone in a wipe form that is a bit greasy. Our insurance sent a box of 100 for a month.  Pretty sure we used at least 10 tonight.  They cost $51 a box.  I don’t really want to run out!

We got Z’s skin washed, dried, skin barrier wipe applied along with stoma powder for his now highly irritated skin, more stoma paste for the wafer, slapped that puppy on, added the bag and prayed.  Because really, what else can we do at this point?  Oh yea, cry.  We cried all right.  It stunk.  It was a suck fest.  And then I got mad……

I’m pretty stubborn.  I don’t like to lose.  This ostomy stuff may be sucking the life out of us at the moment, but we will figure it out.  We can’t keep doing this.  Starting tomorrow I’m on a quest to figure out the right formula for Zachary’s skin and we are going to start kicking butt and taking names.

Tomorrow I’ll post some fun pictures of Zack in his new Mustang.  He and his dad put it together today and the battery is charging.  It will be ready to go at dinner time.  There will be much celebrating and much excitement!  Stay tuned!!

Dawn

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