The Return of the Stoma

I wrote my last post the day of Zack’s hospitalization before everything went kerflooey.  I had no idea what was about to happen….and now, the rest of the story.

We knew it was too good to last.  A fun summer full of tennis, swimming, running around like crazy, jumping on trampolines, riding bikes and water balloon fights.  We packed a lot into the three weeks after school ended.  I am so glad that Jim and I had been trying to let Zack do as many fun things as possible for as long as he could because last Monday all that changed.

Our day started out like any ordinary summer day.  Tennis lessons in the morning, playing outside with friends and getting new library books.  Sigh.  That afternoon, Zack wanted to ride his bike around the cul-de-sac.  I was happy about that because my neighbors were outside and it is always fun to chat with grown-ups.  Soon after getting on his bike Zack came back and started crying in pain.  Sure enough, his stoma was prolapsing.

Prolapsing stomas do not scare me.  We are used to them around here.  Zack crying in pain DOES scare me.  I carried him inside and got a good look at his stoma which was unusually bloody and painful.  Soon it started to look a bit purplish, which in stoma world is not a good thing.  I texted his GI doctor and tried not to let Zack know I was beginning to get worried.  Then Zack said two dreaded things.  First, I feel sick. Second, Take me to 3 West (the pediatric ward at our hospital).

IMG_4406

I started packing a bag for Zack and for me and Jim walked in the door.  He quickly agreed that we needed to head to the hospital and off we went.  Our GI doctor called ahead to the emergency room to let them know we were coming.  I was thankful for that because Zack was super nauseous and could not walk by then.  Soon after arriving, our surgeon came in and explained that he was going to try to reduce Zack’s stoma in the trauma room while Z was under conscious sedation.  We were able to be in the room with him the whole time.  Despite his surgeon’s best efforts, Zack’s stoma was not cooperating and he told us that the next step was to try to reduce it in the OR and if that failed he would need surgery.  He felt that surgery was likely.  I told him I was hopeful the reduction would work.

I was wrong.  After a valiant effort, Zack’s surgeon came to see us in the waiting room around 12:30 to give us the bad news.  Zack needed surgery and he felt he needed to open his abdomen again because he was worried about damage to the intestines and wanted to make sure they were OK.  Three hours later, the surgery was done.  Zack had to have 6″ of his intestines removed and a new ileostomy placed.  The surgeon was glad he opened Zack’s belly because he discovered a hole in Zack’s intestines that he would have missed otherwise.

Zack went to the PICU to recover and for pain control.  Until recently, Zack’s pattern with surgery is to have pretty intense pain afterward.  We have had to stay in the hospital longer than expected numerous times.  This time Zack was in the PICU for a day and a half and then moved to the ward.  He had pain, of course, but it was well-managed with a PCA of Dilaudid and Toradol.  Our doctor told us he would need to remain in the hospital to finish a 72 hour course of IV antibiotics because of his messy abdomen.

For Zack, going to the ward is a happy thing.  He knows all of the nurses and medics and most importantly, feels safe and loved there.  Once he was all tucked into his new bed, our social worker stopped by to see if she could cheer Zack.  Before we knew it, there was a shaving cream fiesta happening.  They put shaving cream on the window and finger painted.  Zack put shaving cream on our social worker, medic and several nurses.  Even our PICU nurses got in on the action.  It was really fun!  Zack was still pretty darn tired, so he sat in a chair unable to really lift his head.  Here are some pictures:

IMG_4486IMG_4488IMG_4489

Sometimes being in the hospital can be fun(ish)!

The next few days were spent healing and getting stronger.  Zack knows the hospital game now and tends to say he feels fine so that he can get off his pain button and out of the hospital.  Everyone knows he is always “awesome”.  This time he tried to fake out the nurses with his pain number.  You know, how would you rate your pain 1-10?  He told one of the nurses his pain was zero.  I did not hear what he said, so I asked him once the nurse left.  Zack told me he told our nurse his pain was zero, but “for you mom, the pain is really a two.”  Stinker.

IMG_4448

So now what?  No. Really.  Now what?  Someone please tell us what to do.

We know that Zack’s body does not have any internal scarring.  After eight surgeries this is kind of crazy.  His surgeon says Zack’s body is magic.  We know that his body does not like ileostomies.  This is sad because when they work, he feels SO much better.  When they are not working, he feels so incredibly bad.  It is not normal for a person to prolapse this much.  What is the reason?  Nobody knows.

Do we do more testing on his colon to confirm if it works or not?  Do we check into the obstruction at the anastomosis again?  Do we throw in the towel and say take the colon out?  Will the small intestine, which keeps prolapsing as an ileostomy, man up and work as a colon or will it continue to be a pain in Zack’s…well…ass. Nobody knows.

If we decide to take his colon out and do a pull-through operation, it is a pretty big deal.  There are lots of things to consider and it does not magically make him better.  There is a long recovery period with a high risk of complications. So, again I ask, what do we do?

The time has come for Jim and me to make some tough decisions.  We do not have much time until Zack prolapses again and we do not want to have to put him through another emergency surgery.  The plan, for now, is to conference call with our GI and surgeon here and our GI and surgeon in Cincinnati and talk about all of our options.

In the meantime, we are in the middle of stoma hell again.  Zack’s new ileostomy is much larger than the others.  It is also closer to his staple line.  This make it hard to get a good seal on his bag, so it keeps leaking.  Yesterday and today we have gone through 5 bag changes per day.  His skin is raw and bloody.  Zack is convinced his staples are going to rip out of his tummy.  He is pretty mad that it hurts so much.  Today we saw a show with a little girl complaining that she scraped her knee and needed a Bandaid.  Zack said, “Oh, COME ON! She’s complaining because she scraped her knee?”  We may have to work on empathy…

That pretty much summarizes our last week.  Even though it was stinky, we were again blessed by everyone who helped Zack.  Our surgeon and his team, our GI doctor, Zack’s nurses and staff and our social worker.  If you have to be sick, it is nice to be in a place that truly wants the best for your child.

I leave you with a shout out to my family.  This Tuesday is our 25th anniversary.  They arranged for Jim and me to stay at a nice hotel near their house for two nights while they kept an eye on Zack.  We were exhausted from the hospital stay and considered backing out, but decided to give it a try.  Even though we had to go and take care of Zack’s wafer quite a few times, we were able to sleep for 10 hours straight the first night, go out for a nice dinner and spend some time without drama.  We did sign up for sickness and health after all.  Hopefully more healthy days will be coming our way soon.  So thanks family.  You rock!

photo (5)

Hug your babies!

~ Dawn

 

Summer Life – A New Hope (Channeling Star Wars)

This is a post I wrote last week, but had not yet posted.  A lot has happened since then, so I have decided to make this a two-part post.  There is a lot to say….

After two summers of not feeling well, this summer is off to a fantastic start.  Jim and I are determined that this child will play, swim and run around like a crazy man as much as he wants for as long as he is able.

We found this really cool belt that covers Zack’s ileostomy bag and keeps it in place and fairly dry in the pool.  For the past two summers, Z was only able to be in the pool for about 30 minutes before his wafer started to loosen and he had to get out.  Nobody wants intestine juice in their pool.  One of Zack’s goals for the summer was to finally learn to swim and he is one determined fella.  Jim and I cannot believe that one of our offspring is eight years old and still not swimming.  We taught swim lessons and coached swimming for years.  Our other guys swam by the age of four. Intestinal issues have been messing with our fun.

Enter the Stealth Belt.
IMG_4299

Zack is showing off his muscles and his belt for you.  He loves it.  As an added bonus, we figured out that if we leave it on after swimming his wafer will re-adhere to his skin.  That was a happy, accidental discovery!  Zack wants to try to wear it to school in the fall so that the other kids do not see his bag.

Zack was also having trouble this year with his g-tube itching.  His granulation tissue is oozy and he is always messing around with it.  This has been a pretty big distraction for Zack in school and in life.  We found a company that makes covers to go around g-tubes that absorb the ooze.  Even better, they make them in Super Hero designs AND they made some super cute Batman covers just for Z.  He wanted to take a picture of one for you. The company, AdoraBelly Design, was founded by a mom of a child with a g-tube and we love our tubies!  I know this sounds like a commercial, but it really is not.  We just really like them.

IMG_4387

Zack has also been having fun learning to play tennis.  He has actually even hit the ball a few times.  His coach is amazing and super patient.  All things physical are pretty tough for Zack and take a lot of time to learn.  Zack is excited to go to lessons each day and we even bought a big bag of balls to practice with…I just wish they were easier to retrieve.  You can never get too much exercise?

And now, because you knew all of this was too good to be true, back to the other part of our life…prolapsing.  Sadly, Zack has begun to prolapse again.  The first time it happened we all cried.  We thought we were doomed to daily prolapses and suck.  Happily, Zack made it two weeks before he prolapsed again.  This time was pretty painful

FullSizeRender (2)

The next time it happened three times in a week.  We realized that we were back on our path to daily prolapsing.  We tried to get Zack to rest when it started to protrude, but a guy can’t stay on his back all day long.  There are things to do!  That is where we are today.  Holding our breath that Zack will stay healthy just as long as possible, but realizing our time is short.  We are crossing our fingers that Zack will get to play for many more weeks.  We can dream…..

Our week….

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

IMG_3905

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.

IMG_3901

Hug your babies!

~ Dawn

Surgery Time….Again

Tomorrow marks one week since Zack was discharged from Johns Hopkins after his crazy stoma prolapse incident.  Yes, let’s call it an incident.  Since then he has been doing really, really well.

zwendys

Thumbs up for getting food in his belly after school today…or maybe just into his cheeks.

Even so, the time has come to do something about this stubborn stoma.  Zack cannot continue to go on like this and honestly, neither can we.  I mean, we could, but it is no longer the best option for our son.

After much discussion with both Zack’s GI here and his surgeon in Cincinnati, we have decided it is time to go ahead with the reconnection surgery.  The results of Z’s week-long GI testing in July showed normal motility and normal anatomy.  The only abnormal finding was that he was not able to empty his colon after the contrast enema.  Like at all.  Not one bit.  Nada. Zero.  Nothing came back out after that procedure.  Normally, the fluid they use for the test just runs back out.  That was concerning because his colon has been diverted by the stoma for over 14 months and he was still able to hold all that fluid in his body.

Zack’s testing also showed redundant bowel loops in his colon.  Think floppy colon…at least that is how Z’s surgeon explained it or maybe just how I understood it.  The redundant bowel loops combined with Zack’s withholding ability makes things a little interesting.

To overcome this, he will have his sigmoid colon removed along with part of his rectum.  By removing the redundancy in his colon, his stool will have more of a straight shot out of his body.  By removing part of the rectum, he should not be able to hold as much stool in anymore.  An important point, Zack is not willfully holding his stool.  He has no conscious control over it.  He likely never learned to stool properly and really has to relearn the behavior.  Fun times.  Man, it is hard to type this because I understand it when I am listening to the doctor, but I am not sure if people can understand my explanation.

After the sigmoid colon and part of the rectum are removed, Zack’s surgeon will attach his remaining colon to the remaining rectum.  She said they use staples for this at Cincinnati Children’s and that they have had great results. Leaking from the attachment site is a complication from this particular surgery and they have not had any incidences of leakage in over 4 years at Cincinnati Children’s.  Once they attach that segment, air is pushed through while one doctor looks from below and one from above to make sure all looks good.  If they have any concerns at all, they will close Zack up and leave his ostomy to allow that section to heal.  If it all looks good, they will then head up to his ileostomy.

The second part of the surgery will be reattaching the small and large intestines.  At this point, the doctor will assess if she can use all of the small bowel or if some will need to be removed.  It is probable that the part that keeps on prolapsing will have to be resected.  Zack has already had a little bit removed once before (15 cm) .  This should not affect his body in any negative way.  Once this has been done, she can then close his abdomen up.  He will also have botox injected into his sphincters to make his first bowel movements less painful.  Sounds easy, right?

After surgery, Zack will be on IV fluids until his body begins to produce stool.  Typically, this averages 4 to 5 days.  The first stool will be very watery and full of mucous (I hope you were not eating while reading this…).  Once this happens, Zack will be able to begin eating.  Eating real food should cause the stool to begin to form.  At this point, Zack will begin taking large doses of laxatives.  Are you jealous yet?

We expect Zack to be inpatient for 5-7 days.  Once he is released, we will stay another week or so to help regulate his laxative dose.  This involves having x-rays to make sure he is emptying properly.  We expect to be in Ohio for a total of two weeks if all goes according to plan.  We are due for that one of these days….

My eyes are now burning because thinking about all of this makes me tired.  We thought we had more time before Zack would have this surgery.  When we left Cincinnati, we thought he was done with surgery until next summer.  We thought Zack would be able to have a break from surgery and hospitals and pain.  I think all of us will just be glad to get this over with and move on to the next phase.  I originally thought the next phase was going to be easy, but it sounds like it will have its own challenges.  Hopefully, those challenges will be able to be managed on an outpatient basis and without more surgery.

We will update our blog once we get to Cincinnati.  Prayers welcomed and appreciated.  As always, hug your babies!

~Dawn

 

 

Prolapse Part III – Update 2

Quick update on Mr. Z.

Zack went back to the OR and the doctors were quickly able to get his intestines back into his abdomen.  They said that it required a lot of muscle and that there is no way they could have done it with Zack awake.

The good news is that no surgery was required.  I do not think that Z thinks any of this is very good news.  To say he was upset while being wheeled into the OR would be a gross understatement.

He is still not feeling all that well as his tummy and bottom hurt.  When he was coming out of anesthesia he actually asked me to massage his bottom.  That’s a new one.  The nurse got a good laugh when she heard him say that.  All we can figure is that with as much pushing as was required, his bottom was probably smushed on that hard OR table.  That is the story we like to believe at any rate.

Here he is his after getting back to his room.  This is his new after surgery scowl.  It is better than his new screaming down the hall to surgery behavior.  photo (97)

Currently, he is sleeping peacefully.  If we can get his pain under control (he did have several grown men pushing intestines into his abdomen), get him to eat and go to the bathroom, we can go home later today.  Maybe after a good nap he will feel more like himself.

photo

Jim and I are now placing bets on which will happen first – another admission for a pesky prolapse, another obstruction or going to Cincinnati.  Happily, for the moment, all is quiet on the Zachary front.  We plan to enjoy his nap and the view outside our window and try to be grateful for all the good things that have happened and all of the wonderful people who have helped us.

photo (98)

Learning Patience

Hello Adoring Public.  That is a joke…I’m never sure if people can tell.  I have had several people ask me why I haven’t written an update lately.  I’m humbled that you actually read my blog and surprised you are waiting for another entry…  Thanks!

Things are going OK.  We are still plugging along with all of the paperwork we need to get to Cincinnati.  Zack’s GI doctor and his secretary have been Rock Stars in helping us.  The amount of information that needs to be sent to Cincinnati is overwhelming.  Here is a sample:  Referral, GI Notes – from present to just before diagnosis, Lab results, Radiology results, Pathology/operative reports, Radiology images on CD, Pathology slides, Discharge summaries, Growth Charts and Primary Care Office Notes.  That is a lot of information!  At the end of the list the note says that if the file is less than 30 pages it can be faxed.  Z’s doctor says his is over 700 pages!

All of the information has been sent to Cincinnati as of today, I believe.  Cincinnati has yet to receive any of it, though, and this is holding up actually getting an appointment.  It is super frustrating, but understandable.  Just because I want Zack there yesterday, does not mean that is how it works.

Zack continues to have a large amount of intestine out each day.  We have measured over 9 inches and most days falls around that amount.  Yesterday his intestines did not prolapse until late afternoon.  He was hungry all day long and I enjoyed giving him lots of food.  Today his stoma came out before he even ate breakfast.  We cannot seem to find any pattern as to what makes his intestines come out.  The only pattern we have been able to establish is that Wednesday’s are going to be bad.  Seriously.

Why Wednesday?  We do not know.  It really does not make sense.  Zack gets to sleep in on Wednesday mornings.  His Home and Hospital Teacher arrives at 9 a.m.  We always have a lazy morning which suits me just fine.  I’m a sleeper, remember?  After his teacher leaves, we spend the morning playing quietly or reading our favorite new book series, “Fly Guy”.  Zack heads to school and has music, OT and math and then comes home.  Really nothing crazy.  He is allowed to use the elevator at school, so he even avoids climbing stairs.  Still, every single Wednesday his stoma is GI-NORMOUS.

To be honest, every night finds Zack with a large, swollen, bloody stoma.  As I have said before, we can tell it hurts by how he stands and how he walks.  Zack, however, does not want to miss out on “fun” and will tell us he is fine when he clearly is not.  We walk a fine line in trying to decide when to let him just play and deal with the pain later and when to step in and play mean mom and dad and make him come inside and miss out on normal little boy play.

I think this is one of the hardest parts about having a “sick” child. He wants to go outside and play.  He wants to run with friends.  He cries if he misses fun things and who can blame him.  Sometimes we just let him play and deal with the pain later.  He does not really complain about the pain.  He just says things like, “It’s time for the codeine now!”  He also likes to say, “Please carry me up the stairs.”  Between those two statements and the blood in his bag, we know he is in pain.  It does not take a rocket scientist to figure that out….although his brother is studying Aerospace Engineering, so we could ask an actual rocket scientist to figure it out for us!

There you have it.  Same old thing.  Still waiting.  Still hoping nothing happens between now and when we actually get to Cincinnati.  Although we do have a plan if Zack has an emergency. His surgeon’s plan is to take down his ostomy, reattach and create a sigmoid colostomy until we get to Cincinnati.  It seems like that would be a pretty involved surgery and not what I would like for Zack, but if he has an emergency, it is nice to know there is a plan.  Sort of.  I do not know how my heart would handle that!  My sweet husband reminded me that just because we are going to Cincinnati, does not mean that they will actually be able to fix Zack.  I have decided not to allow that idea to take up space in my brain.

I felt a little defeated today when I heard Cincinnati still had not received anything from Walter Reed.  I felt defeated when Zack’s ostomy supply company called to say his prescription was incorrect and they could not send us any more supplies…seriously? You can NOT be without ostomy supplies!  I felt a bit frustrated when the Home and Hospital people called to say Zack’s referral was ending and needed to be renewed again.

BUT then I got a text from the GI doctor letting us know what was happening.  I got an email from a nurse working on tracking some of the files that should be in Cincinnati already.  Our ostomy nurses took over working the supply situation.  Cincinnati called and the lady I spoke with was super encouraging.  AND Zack got another purple ticket for behavior at school.  Purple tickets are reserved for the best behavior and are really hard to get. He must be working a scam, though, because he has had 3 in the past 4 days.  I digress…..Today was a great reminder for me to remember that while I am not in control of Zack’s situation,  I do have a choice in how I respond to the situation.  I might want to scream in frustration (and I do…in my pillow), I might get teary and feel sad.  But I hope that when people see our family, they see the strength we get through our faith in God, even when things are stinky.  I hope they see real people, living real life the best way we know how, through the good, the bad, and the ugly.  If not, I hope this cute face will help them forget the ugly stuff….

photo (38)

 

 

 

 

Pity Party Terminated

Life has been moving right along around here.  Zack attended his second full week of school, missing only part of one day for a doctor appointment.  We could get used to this.

Our new prolapsed stoma has been giving us some trouble and being a real killjoy.  Our GI doctor assured us that prolapsed stomas are usually no big deal, but had us call the ostomy nurses and get their recommendations.  On Wednesday evening, Zack had an incredibly tough night.  His stoma was pretty swollen and he was in a LOT of pain.  He wanted to go home from Wednesday night church.  Um, they have snacks and play games and do crafts and have FUN.  Zack couldn’t walk right and was crying, so home we went.  I was going to take his wafer off and check things out, but he would not let me touch him.  He took off his clothes and curled up in a ball on the floor, asked for pain meds and moaned.  I was ready to take him to the hospital, but he insisted he did not need to go.

You may be asking why I took the word of a six-year-old.  Well, this child has told us every time he has needed to be admitted.  He can tell you when he needs an IV or when he needs to go to 3 West (the name of his children’s ward).  When he said he did not need to go in and did not have a fever or vomiting or any of the other danger signs, I believed him.  BUT you would also be right if you thought I watched him like a hawk and didn’t get much sleep.

The next morning, the ostomy nurses paged his surgeon and he wanted him seen.  The surgeon was not in the building so we saw a new guy.  Zack’s stoma always recedes overnight and in the morning it looked great.  He didn’t want breakfast and was a little on the quiet side, so just to be safe we went in….it was the most frustrating doctor visit ever.  Z did not behave.  His stoma looked fine.  I showed them the photos I had taken the night before, they were impressive, but Zack was fine at that moment.  I am grateful that he felt better then, but he does not feel better today.  His stoma has prolapsed every day since.  I think this is normal.  The pain is not normal.

I haven’t written on the blog because I have not been feeling cheery.  I have been feeling frustrated.  Z’s GI doctor feels like Z is on the mend and just needs time for his body to mature and his intestines to shrink and all will be well.  I agreed with him for a time because that really sounds great, but something is not right.  My child should not be in this much pain every day.  Today we went out for lunch after church and as he ate I could see the color draining from his face.  He began groaning about his stomach hurting and needing Motrin.  After he had some Motrin and some quiet time, he began to feel better.  His stoma is still pretty impressive, though.

Could it be a food he is eating?  Could his Imodium which thickens his output cause things to slow enough to hurt?  Is there some strange, unidentified thing messing with his intestines?  We don’t know, but something does not feel right.  Luckily, all of our doctors have encouraged us to get second opinions.  We just really hoped they would be able to figure Z out without us having to go elsewhere.  It appears that the time has come to investigate this possibility for real.  We will meet with Zack’s doctors again soon and discuss our options.

As we have walked through Zack’s life, I have tried very hard to be positive.  I have tried to talk not only about the hard stuff, but have also tried to engage neighbors and friends in other topics.  I’m sure I’m not always fun, but I try hard not to be a negative person.  I have some wonderful neighbors and friends who have been very encouraging and I am so thankful for that.  Our new neighborhood has been very welcoming and has embraced Zack in so many ways.  I can’t think of a better place to live and I’m excited he gets to grow up here.  At the same time, my life feels so different from all of theirs…I told you I was having a pity party.

I find myself thinking about all of the appointments Zack has every week – PT, OT, speech.  I think about all the doctors appointments we have – although they are decreasing.  I think about the IEP meetings and things I need to learn in this new Special Education world.  Sometimes it is just plain overwhelming.  I often feel as though I am just waiting for the next crisis instead of enjoying today.  I’ve decided I have had enough of that mess.  It’s time to refocus.

Last week I was fortunate enough to spend time with a new friend who has a daughter with special needs as well.  We were able to compare stories and frustrations and just be real about how things can be hard.  And that is when I realized what I have been missing.  Having another mom to talk to who gets this life of mine.  I realized that I can reach out to others. There are two other families at church who have children with special needs.  I’m just getting to know them, but I realized I’m not really alone.  I’m excited to be able to share my struggles with them and to listen to their struggles and to be a support.  I’m excited to have people to talk to about the hard daily struggles that just don’t really make sense unless you are living them.

Zack’s struggles are a big part of my life, but not the only thing I want to talk about.  I realized that without having someone to talk to about his struggles, I haven’t been able to be a good neighbor or friend to those around me.  I have needed a safe place to vent so that I can leave the issues for a few minutes and focus on other things like Book Club and volunteering in my kids schools and hanging out with the neighbors without having Zack be my only topic of conversation.

I’m actually happy that I was able to have a week-long pity party.  It helped me sort some things out.  It helped me realize that if this is my new normal, I’m smart enough not to let it consume me.  We still have a long road ahead of us, but I’m so thankful that I have a spring back in my step, a plan to take me forward and great friends, neighbors and family members to walk alongside of me.

Prolapsed Stoma

I don’t know if anyone has noticed, but we have had our share of complications around here.  Yesterday, Zachary’s school nurse called to tell me that his stoma was looking a little different and bigger than normal.  It was close to the end of the school day, so he rode the bus home as usual.  I peeked at it as we rushed to our next activity and noticed that it looked swollen, as if someone had pumped it full of air.  Zack was acting normal, so I figured all was well.

On Wednesday nights, Zack attends a kids program at our church.  I am a group leader of older kids at the same time.  Usually he goes to his class and I see him an hour an a half later.  Last night his leaders had to come and get me several times because he was teary.  He said his stoma hurt.  Anytime anyone touched him he got upset.  I took him aside and he said he had “deep pain” and needed medicine.  I started to get a little worried then…

When we got home I took his bag off to get a better look at the stoma.  Not only was it swollen, it was protruding out from his body.  After much crying and talking to daddy on the phone, I finally got Z into the tub and we got his wafer off.  I had put it on less than 12 hours before and he was worried it was going to hurt.  He was right.  Once that wafer was off and he was in the water he started really complaining about the pain.  I got him out of the tub and on the floor to assess the situation and then I freaked out!

As he was crying the inside of his stoma came out, like a telescope.  Seriously.  I took a picture and sent his doctor a text.  It started getting worse, so I called his doctor.  I’m sure he lives for my texts and calls.  They brighten his day and never interrupt his family time….I’m grateful he is so kind.  I’m grateful he loves his job.  I’m grateful he actually answers me when I’m freaking out.  Happily that has only happened a few times.  That’s my story anyway.

Zachary’s doctor told me that his stoma was prolapsing.  Let me save you from making my mistake – Do Not Google This!  He said that he would much rather have a stoma prolapse than a stoma that was too tight.  He said that as long as his output was good, the stoma color was good and that Z did not have any nausea or distention or pain, all was well.  Of course, at that moment he was in a lot of pain.  I gave him some pain meds and his doctor told me that if he did not calm down he needed to be seen.  He then told me that I could gently massage his stoma and guide his intestines back inside.  WHAT?  I did NOT sign up for that in parenting class!

Last night I learned how to put intestines back into my child’s body.  Ponder that.

I can honestly say that this is not something I had on my bucket list.  It is not too bad, but it is also not my idea of a good time.

The good news in all of this is that a prolapsed stoma is not usually dangerous, just creepy – in my opinion.  I hope that Z never knows I think it is creepy.  I’m sure I’ll get over it in a couple of days.  Another cool thing about Z’s GI is that his wife is also a doctor.  She told us that if we put a tablespoon of granulated sugar on the prolapsed stoma, it would shrink and retract.  The sugar acts as an osmotic agent pulling the water out of the stoma and decreasing the swelling.  It’s like we found a two for one sale on doctors.  If Z’s doctor ever reads this (which I highly doubt), I hope he knows we mean this with the utmost respect and gratitude.  We are a blessed family and we know it!

Zack was all about trying the sugar experiment.  He was compliant and excited.  He took pictures and even sprinkled the sugar.  It reminded me of putting salt on a slug…come on, you know you tried that as a kid!  It worked and that was exciting.  The only problem we encountered was that as soon as Z stood back up, the stoma came back out.  That was a bummer, but at least it shrank in size for a moment.

I guess that nothing can really be done about Z’s prolapse.  As long as he is feeling well and things are moving along well, we will call it good.  I’m sure it will take us a while to get used to this new development.  So this family will keep on being grateful that even though this development is not what we would like to see and certainly not what we would choose for Zack, all is well.  Let’s hope this is the end of the weirdness!

Picture of the day:  A blurry shot.  I have a nice camera.  I just never have it with me. My iphone takes terrible photos…or maybe it’s just me.  Jake’s Drama Club sent Z some gifts to help bring him cheer.  One of the gifts was this big Sully.  Z loves it.  I hope you can look past the photographer stink and see the joy this gift brought our guy.  Thanks LHS Drama Club!

photo (11)