Best Day Foundation And An Update

August was a month packed with lots of visits to Walter Reed and I wanted to wait until Zack had all of his appointments until I posted an update.  Originally we were just going to have a visit with Zack’s surgeon and a visit with genetics.  At our surgery visit, a referral to neurology was added. To add more excitement to our month, Zachary needed an eye exam.  In addition, Zack’s PCM retired from Ft. Meade and that seemed like the perfect time to transfer Zack’s regular pediatric care to Walter Reed.  This meant adding another appointment to establish care with his new doctor. Actually, we have known this pediatrician for years from Zack’s inpatient days, but she was not officially Zack’s doctor.  The way it all came about is a fun story, but I’ll save that for another time.  We are thrilled to have her supervising Zack’s pediatric care.

As August ended, we knew that we needed to see Zack’s GI and it just made sense to wait to update the blog until all of those things were complete.  Although by doing so, it makes for a long update…

Let me see if I can do a quick(ish) summary….yeah, right…you’ve met me.  Quick is not my thing, but I will try because it is 11:30 p.m.

Not much new happened with Zack’s surgeon other than learning that he was deploying, so we hope that nothing surgical happens in the next few months.  We did talk about some surgical options, but I refuse to think about those until Zack’s body tells us otherwise.

During Zack’s genetics visit, we decided to have whole exome sequencing done.  It is pretty interesting stuff.  If you want to learn more about it you can click on the link above.  The test takes several months to come back and we have been told that it only finds issue about 30 – 40% of the time, but it is one of the best tests available at the moment and much more precise than the last test Zack had 6 years ago.  Jim and I also had our blood drawn so that if abnormalities are found in Zack, they can compare our DNA with his.  We signed lots of papers and had lots of counseling about what this test can and cannot do and the different things we might discover.  Now we just wait.

Neurology really didn’t tell us much, but it did rule out lots of diseases.  The most interesting thing that I learned was that the brain and the skin develop at the same time during gestation.  Zachary has several skin abnormalities which the doctor seemed interested in, but the big diseases that occur together with the brain were ruled out.  We left there learning that the neurologist believes that Zack’s issues are chromosomal.  So, basically nothing new.

Zack’s pediatrician appointment was great because we have never had a pediatrician that truly understood everything going on with Zack.  This doctor really does.  She actually read his entire medical record back to our time in Germany.  That was certainly a time-consuming feat.  We were so thankful that his doctor took the time to do that so that she could really understand Zack and all of his medical concerns.

Zack’s ophthalmology visit was not as wonderful.  Last year Zack was so nervous about getting his eyes dilated that the doctor said he could wait until this year to do it, but that it had to be done.  Zack was even more nervous this year, but we worked on helping him through it and he was ready.  Before his appointment, the Red Cross Dogs made a special trip to see him to help him relax.  When we got to the appointment, Zack was clearly agitated…but ready to get his eyes dilated.  The doctor saw him and said, “Well Zack, I’m OK with waiting until next year to dilate your eyes, but I will leave that decision up to your mom. Just know next year you REALLY have to get it done.”

Um……who does that?  What doctor tells a child something like that and then makes the mom the bad guy.  I was not impressed.  Zack was ready to do it because he knew he had no choice.  Now he thinks he can get out of it again.  I rarely complain about doctors on this blog as it really serves no purpose, but come on!  That was craziness.

Zack and Elsa and Bailey before his eye exam.

Z’s GI appointment today was interesting.  For the past month we have been noticing a downward trend in his weight.  Today we talked about getting more calories in him through his feeds.  He currently receives 1200 calories overnight and we are bumping that up to 1400.  His g-tube, which was too small before his revision in March, is now too big because of his weight loss. That was resized today.  We also discussed seeing if a trial of steroids might help Zack.  He is still dumping (too much output) for some unknown reason, still has belly pain, still prolapses and still has days where his stoma is swollen.  The thinking is that perhaps Zack’s issues are some weird autoimmune response and that a course of steroids (several months) might help calm that down. Because this has been an issue for years, nobody knows just how long it might take.  From what I understand, we will be watching his body for clues to measure its effectiveness.  Steroids come with their own set of side effects, but one of the good ones, for Z, is weight gain.

If the steroids improve his symptoms, we will take him off of them and wait and see what happens.  If his symptoms return, we will do scopes and full thickness biopsies to get a baseline.  Then start the steroids back up for a time and repeat the biopsies to look for improvement.  If they don’t work or if Zack has adverse side effects, we will stop the treatment.

Whew.  Two more updates.  First, Cap has started Medical Assistance Dog training to try to help Zack with his medical trauma anxiety or PTSD.  We are all pretty excited about that.  It is a long process, but Cap seems to really enjoy it and Zack loves it!

Second, Zachary had the opportunity to head to Ocean City, MD last weekend and go SURFING!  The Best Day Foundation hosts events in different cities for children and young adults with disabilities to allow them to try adventure activities that they would normally not be able to.

Zack was paired with some buddies, Angie, Terri and Mason, who helped take him around to different stations.  They were wonderful and so encouraging and loved on Zack and helped him feel incredibly special.  A big team of volunteers worked to help the kids surf and boogie board, play in the sand, meet some super heroes, have lunch and get medals and goodie bags.  The weekend was super rainy but, for that hour and a half, not one drop of rain fell, the sun came out and once each child had several opportunities to get into the water the skies opened back up.  Perfect timing.

I leave you today with our favorite pictures.  Just a little warning….I am posting a ridiculous amount of photos.  My blog also serves as my journal, so I wanted to make sure I could find these pictures easily.   Some pictures are our own and some are from the Best Day Foundation Chesapeake Bay Facebook page taken by Desiree Ortman Photography and Nick Denny Photography.  I’m sure you will be able to tell which are ours.  If you are on FB, head on over to the Best Day page and check out the awesome photos of the event there as well.

Zack all suited up and waiting his turn.

A very happy surfer!

Zack after his first ride being asked if he wanted to go again…heck yeah!

The amazing volunteers who helped Zack catch some waves.

Zack’s buddy, Angie.  She made his day extra special.

Another of Zack’s buddies, Ms. Terri.

First boogie boarding attempt.

Check out the size of those waves.

Zack’s team.

Just a boy enjoying the ocean.

Zack telling us that he really NEEDS a surf board.

Zack’s cheering section.  Dad, Mom, Abby and Dan.

Celebrating with pizza and some of Zack’s favorite people.

And finally, one of Zack’s surfing runs.  The video is a bit blurry, but totally amazing. Thank you to the Best Day Foundation for an amazing experience!

After writing all of this, I came to the conclusion that jamming all of this info into one post was a bit nutso.  If anyone besides my mom actually reads to the end, I will be super impressed.

Hug your babies!

~Dawn

July 2018 Update

Time for a Zack update.  I’m tired, so I don’t know how fun this will be to read.

For the past few weeks, Zack’s belly has been hurting.  While Jim was away Zack had two episodes of pretty intense pain that were fairly short in duration.  He was having his usual lack of output during the day along with a swollen stoma and prolapse thrown in to the mix.  Adding to the fun was a lump that randomly appears next to his belly button.

This face is Zack’s pain face.  It kills me.

The lump…sometimes it is on the right, sometimes on the left….

Additionally, Zack has been suffering from some pretty intense anxiety.  He is worried about dying at night.  The worry is so great that it keeps him from falling to sleep.  Seeing him so scared and being unable to calm him is pretty hard.

Last week Zack had a hard day with belly pain, distension and lack of output.  He thought he needed to be hooked up to his feeds because he was soooo hungry.  Turns out he actually had a belly ache.  Once we attached him to his feeds, he began crying in pain. Jim and I felt he was OK and got him ready for bed and then things went a bit wonky.  Zack was so upset about dying, convinced he was low sodium and worried about his belly that he actually asked us to take him to Walter Reed.  Zack NEVER asks to go to the hospital.  Jim and I were still not positive he needed to go but, because Zack is almost always right, off we went at 11:30 at night to the ER.

Zack did well until the staff began discussing getting blood for labs and then angry badger made an impressive return.  Jim says angry wolverine is a more accurate description.  Jim needed to restrain him.  The staff discussed giving him ketamine or ativan to calm him down.  I left the room because it was too upsetting to see him like that.  The staff and doctor were so incredibly kind and tried really hard to help Z feel more comfortable.  After about 45 minutes of fighting, Zack was able to calm himself down and no ketamine or ativan were needed.  He was then able to ask the nurse if she could use a butterfly needle to get his labs and even helped her find the best vein.  All labs and x-rays came back within normal limits.

The doctor said that his belly symptoms were consistent with an intermittent obstruction.  These happen to him most days, but this one was particularly painful and his belly was distended making it a bit more intense than our average day.  As soon as his output started back up he felt much better.  Also typical for him.  So basically, more of the same crazy we have every day with some major anxiety added on top for fun.

The next day, Zack’s GI doctor and I spoke.  We know that Zack has narrowing near his jejunum and another 20 cm in from his ostomy.  We know that surgery would probably fix that issue, but not address the underlying issue – which remains unknown.  Given his history and our desire to NOT have more surgery, he came up with a three-part plan to try to help Zack.  The plan is not found in any medical textbook as we are trying to find things that work specifically for Zack’s “unique” body.  The first idea was to try to simulate the relief Zack seems to get with barium by essentially doing a Miralax cleanout once a week.  We are on our second attempt and the reviews are mixed.  Barium seems to give Zack relief for about a month.  The Miralax lasts about a day.

We did not see any improvement the first week.  Zack’s belly hurt the very next day and there was not any real noticeable difference in his output.  We gave Zack his second dose this past Sunday and still did not notice much of a difference.  Zack’s stoma has been just as swollen and his belly still hurts.  However, although his output was still low today, he actually had output.  Zack also asked us to give him more Miralax to help his belly feel better.  So, maybe there is hope?  We will continue this for a few more weeks.

If the Miralax trial does not do the trick, our next step will be to try to stent open his stoma with a red rubber catheter.  Of course, Zack would need some sort of light sedation for that and well……

How would you like that inside your intestines?

Our third option is to do more scopes and get full thickness biopsies to look once again for eosinophils.  If we find those again, we would do a trial of steroids and if we see improvement in his belly, redo the scopes to try to prove the steroids are helping.  There is much more to all of that, but the gist is to try to figure out if we are actually dealing with eosinophilic ganglionitis. Yes, we have been trying to do that for a few years, but were waiting for Zack to be a bit sicker.  He still is not really technically sick enough, but it is time to try.  Isn’t that nice?

In the meantime, Zack’s anxiety has been getting worse.  As I said before, Zack has become so worried about dying that bedtime is just not happening.  Jim and I found ourselves getting upset with Zack and frustrated with our lack of sleep rather than seeing that our child was/is actually really scared.  Today we met with his psychologist and had a telephone consultation with his developmental pediatrician.  Jim and I feel much better after speaking with the two of them and have a new game plan there as well.  Starting tomorrow we will be switching up some meds and adding some new ones.  We are also working on ways to reassure him, working on ways to help him process his thoughts and feelings, and working on ways to help distract him from those moments which are overwhelming.

Zack has also rekindled his love of watching Miracles From Heaven.  It is a movie about a little girl with intestinal issues that are different from Zack, but similar in many ways.  He seems to really like seeing her get an NG tube, a feeding tube and, of course, seeing Dr. Nurko make a cameo apperance.  He wanted to know why God healed her and if He could heal him.  He also started asking me questions tonight about what happens when you die, if you still have a family in heaven and how God heals you in heaven.  While those may seem like heavy questions for an eleven year old, I prefer to see it as a good sign that we may finally be getting to the root of his anxiety.

I have several friends with kids who are chronically ill.  They have reached out to us and I cannot tell you how much that means to us.  While I am sad to learn that their children also suffer from anxiety over medical issues, it is nice to know we are not alone….because in the middle of the night it sure feels lonely.  I hate that kids who are sick struggle with these issues.  AND I am also so grateful that the doctors who care for them take this seriously and are compassionate and kind.

Lest you think all is doom and gloom around here, Zack does have some fun things happening.  His Aunt Carie is in the States for a few weeks and we have some shenanigans planned with her.  Tennis is in full swing (ha!) and Zack has actually been hitting the ball OVER the net this year.

Our neighborhood is full of boys and Zack has been enjoying playing with them and I love watching that.  Captain Awesome is set to start some new training to hopefully learn how to be a support to Zack and Z is thrilled about that.  We have also managed to hit two carnivals this summer.  At the last one, Zack met up with his cousins and that always make him happy.

Zack with Kelsey (in white).  She’s pretty great.

Tonight we made a new summer bucket list and we hope to start marking things off.  High on his list are going to the beach, making slime, going to Hershey Park and playing with Jake.  We still have another month to make all of that happen, right?

Hug your babies!

~ Dawn

 

Fluoroscopy Results

I started typing this post on June 28 (it has taken me forever)…which was the 5th anniversary of the day Zack came home from the hospital after his first two abdominal surgeries.  It is funny to me the things my brain decides are important and need to be stored forever, like this date, and the things it decides are not, like how convert fahrenheit to celsius.  This is not totally random as I just returned from visiting my sister in Egypt where the temperature was 45 ° celsius and all my brain could figure out was that it was over 100 ° fahrenheit.  I’m so totally off topic….

On the anniversary of this occasion, I thought it might be fun to see what Zack looked like on this date five years ago.  Here he is on the drive home from the hospital.

Such a crazy scary time in our lives and the beginning of our journey into medical oddities.  It was fitting then that, on this day five years later, we found ourselves meeting with Zack’s surgeon to talk about his crazy intestines.

If you are following Zack’s story, you will remember that he had a fluoroscopy test done the last day of May.  We got the results from Zack’s GI doctor mid June, but I was away.  Our GI’s advice was to have Zack evaluated by the surgeon for consideration of correcting the narrowing seen on the imaging and to get him back on their radar…and so we did.

Zack’s surgeon and I talked for quite a long time about quite a few things.  He confirmed that there are indeed two areas of narrowing in Zack’s small bowel.  One is very near his stomach and I totally forgot to ask where the other one is.  Strange for me, I know.  For some reason, I was completely freaked out that there was a narrowing by his stomach.  I could not figure out how they would fix that and allow it to heal and still be able to feed Zack.  All that worrying for nothing (I need to quit with the worrying) as the surgeon said it is in a spot that is able to be fixed.  The issue is figuring out what our threshold for fixing it is.  I told him that Jim and I do not want to fix it until we have to and so that is our plan, for now.

One of the things Z’s surgeon said is that the narrowing could be from adhesions.  In all of Zack’s previous surgeries, he has had little to no adhesions.  His surgeons have all been surprised by this given the child has had 10 abdominal surgeries at this point.  However, it would not be surprising if this is the case now.  His surgeon said that the next time Zack is opened up, it is not going to be a little surgery.  I did not ask many questions about that because I did not want to think about it yet.  When your child has wonky things going on, sometimes it is best to try to just deal with today.  If you know me, please stop laughing now.  I realize I am almost certainly the worst at this, but sometimes I CAN actually do it.  Usually when thinking about it overwhelms me.

We also discussed how long it took for the barium to come out of Zack’s ostomy.  Although the radiologist suggested it was slow motility, it was actually showing Zack intermittently obstructing.  Z’s GI here and his surgeon in Boston have said this all along, but now we have proof.  Actually, Jim and I see proof quite often when Z goes 8-9 hours with no output, has belly pain and a distended tummy.  Proof means nothing though when nobody can say why it is happening or what the heck to do about it.  Since it has been resolving on its own, we do not need to do anything…but it is still not normal.

This not normal stuff is what has been bothering me for a long time.  I spoke to his surgeon about when we began this journey and how it was to give his colon a rest with the hope that it would begin to function properly again.  Instead, it stopped functioning altogether.  That was “fine” because a person can live without their colon.  At that time we also knew that his small bowel was functioning properly.

Since that time his small bowel has been having issues. First with the obstructions which were mechanical in nature, so fixable and not expected to be related to bowel function.  Then the prolapsing began and it was intense and severe.  Up to nine inches of intestines out daily from November 2013 until June 2014 with a few weeks breaks with revisions.  Pretty significant prolapsing again after each subsequent surgery until July 2016.  Since that time Zack has “only” had on average 3-4 prolapses a month, but prolapsing intestines are not normal.  Lately (the last few years), he has been having these intermittent obstructions and belly pain.

I went over all of this with his surgeon and told him my fear that his once seemingly normal small bowel is now having issues.  He was sympathetic and agreed that Zack’s small bowel is indeed having issues.  I told him I was worried that what happened with his colon might happen with his small bowel.  He said, “Don’t go home and google this, but that can happen.”  He also said that it would be extremely rare.  I have tried not to think too much about that, but I’m thinking about it right now! We talked about this for a bit and about the fact that there are lots of “heavy hitting things” we have not tried yet up to and including small bowel transplants.  He was in no way suggesting that Zack needs a small bowel transplant, but just the fact that we were talking about small bowel transplants as an extreme option for my child was surreal.

When Zack talked with his surgeon, his surgeon asked me if I felt his speech was less clear.  I told him that I had noticed that since I returned from my trip, but thought it might just have been because I had been away from Zack for a few days.  That got him asking about Zack’s speech, his school year, and a couple of other things.  Then we talked about what genetic testing we have had done so far.  Zack’s surgeon thinks that whatever is going on with Zack is going on cross systems in his body.  His Kennedy Krieger doctor has been saying this all along.  He said that genetic testing has improved a lot in the 6 years since Z’s last test and suggested we do a much more involved test.  We have a referral in for the geneticist to begin that process in the near future.

We also discussed having Zack more closely followed for now.  Those narrowings in his intestines are still problematic.  Both his GI and surgeon want us to bring him in for an urgent fluoroscopy if his pain returns and we have instructions to have a low threshold for waiting to come in for that.  His surgeon will be out of the country next month.  However, he has left instructions that he is to be contacted directly if Zack comes in to the ED.  I am hopeful that will not happen.  We will see him again once he returns at the beginning of August.

Jim and Zack both reported that Z’s belly did pretty well while I was gone.  It hurt quite a bit today. I told Zack that maybe I should go back on vacation so that his belly would stop hurting.  But seriously, we have noticed that Zack has not prolapsed since his fluoroscopy and that his belly pain has been less as well.  I told both doctors that Jim and I have noticed a difference in pain and prolapsing after these tests.  Although it does not make sense, it could be that the barium is opening up a partial obstruction. It is out of the box thinking and clearly I am not a doctor, but somehow he feels better for a short time after having fluoroscopy studies.

Whew.  That is a lot of information.  Thank you for sticking with me through this long and involved post.  Sometimes writing this blog is a great way for me to brain dump all of the things I just learned.  It helps me process them, although whether I process them accurately remains to be seen.  It is immensely helpful to me, however, when I look back on my posts.  I am able to remember details that would have been forever lost in my brain and replaced by random dates and phone numbers and songs from the 80’s.  It also helps keep my family happy and updated and off my back….just kidding…mostly.

I leave you with a few pictures of Zack’s summer so far.  We are looking forward to a relaxing summer of playing outside, days at the pool and quiet intestines!

Zack and his pup.

Brown belt promotion.

Hug your babies!

~Dawn

 

 

Capernaum Prom

He may only be eleven years old, but tonight Zack attended his first ever prom!  Crazy, I know…and super fun.

For the past year Zack has been attending a Young Life Club at our church called Capernaum.  Taken directly from the younglife.org web page: Young Life Capernaum gives young people with intellectual and developmental disabilities the chance to experience fun and adventure, to develop fulfilling friendships and to challenge their limits while building self-esteem through club, camp and other exciting activities. Without a doubt, club night is Zack’s favorite night of the month.

When Zack began attending Capernaum, we had no idea about prom.  We began hearing about it as the year progressed and thought it would be a fun thing to do.  We also imagined that it would be similar to most of the other meetings of the year with a little dancing mixed in…..WRONG!  This was a full-out PROM people.  The rest of this post will just be videos and pictures of Zack’s amazing night with a few comments thrown in to make things more interesting!

While I CAN tie a decent tie, my skills are a bit rusty now that our older boys are grown.  Jim was away on business this week, so our neighbor kindly offered to help make sure Zack had a good-looking knot.  Thanks, Bill!Zachary’s Grand Entrance!  This was how all of the participants were announced.  Zack definitely felt like a VIP tonight.  Zack was escorted by his buddy, Dan.  Or as Zack likes to call him, “My life-long best friend.”

The amazing Elizabeth, Capernaum Leader and dear friend.  I am still in awe thinking about all of the work that went into this night!

The kids were treated to limo rides.  I am pretty sure my son thought he was in heaven.  And really, tonight was a like a little taste of heaven on earth.  It has been a really hard year for Zack, in many different ways, so being loved on and treated with such kindness was just what this kiddo needed.  At bedtime he asked if he will still be a VIP tomorrow.  I told him he will always be a VIP to me.  He asked if that meant I would buy him a limo…

Zack, Dan and their buddy Jake.

Zack with sweet Abby.  We love her.

The face of a child in awe and wonder.  I mean, come on!  That is pure joy right there.  I hope he has this look on his face often over the course of his life.  Like his flower?  They thought of everything….goodness knows his mama did not think of that!

Photo booth with his BFF.

What dance would be complete without a conga line?

Zack busting out his moves with his buddies who graduated from high school just last night.  Can I just take a moment to tell you how amazing these guys (and girls) are?  Their hearts for people with disabilities is something beautiful to see.  The way they love on these kids, enjoy hanging out with them and encouraging them is truly remarkable.  I cannot even begin to describe how it blesses us.

Zack only allowed me to dance with him twice tonight.  And so it begins….those teenage years are almost here.  I will take what I can get, even if dancing means I hold his 60 pound body and jump around while he sings.  I am pretty sure that counts as an extra workout, right?  Happily, he did agree to take a picture with me and ended the night giving me great big hugs.  I guess I will keep him around a little bit longer.

And there you have it, Zachary’s first ever prom.  It was definitely a night to remember.  Thank you to all those who worked so hard to make it such a special night!

Hug your babies!

~ Dawn

Fluoroscopy and Zack’s Intestines

Over the past two weeks, Zack’s intestines have been a real pain in the gut.  He had been having some intense belly pain and little output.  He did not have distention or vomiting, so I was not overly concerned when it started.  But then he started missing school.  Three different days over the past two weeks.  The pain kept him home and on the sofa or on the floor – see the picture below:

As you may know, Zack does not nap and he does not sit still…unless he feels pretty lousy.  The other concerning thing about these pain episodes was the sheer volume of output that occurred once it resolved.  Seriously.  When Zack loses fluid that quickly his sodium levels tank fast.  He looked terrible.  Luckily, his doctors have armed us with rescue doses of his electrolyte replacement and we know to pump it into that little body of his.  This seems to work, but it still takes a lot out of our guy.

The last time this happened, Zachary’s school nurse said he really didn’t have any bowel sounds or very, very faint ones.  He was very uncomfortable, so we reached out to his GI doctor about our concerns.  He decided that Zack should have a baseline fluoroscopy to see what was happening.  Our plan is to have an urgent fluoroscopy the next time he has that intense pain.  The problem is that we live a little more than an hour away from Walter Reed in normal traffic.  Getting him there while the obstruction is in full swing could be hard since, so far, they seem to resolve on their own.  If we can see what is happening in the middle of the intense pain and compare it to his baseline fluoroscopy, maybe we will glean some new information.

Today Zack had his baseline fluoroscopy.  He has had many of these done in the past, and we have never before seen anything that helps explain his pain.  When we went in this morning, I prepared Zack that this would likely be our outcome once again.  He asked the radiologist to, “Please find the reason my belly hurts.”  A tall order for sure.

Surprisingly, we actually found some issues today.  There was some bowel dilation shortly after the stomach with a transition zone or narrowing of the intestines right after that.  For awhile we thought there might be two spots, but I think it was decided that we were looking at the same spot from different angles.  I’m not really clear on that.  After that spot, the barium made it through the intestines appropriately until the end by Zack’s stoma where it pooled for an extraordinarily long time.  It took five hours and thirty-five minutes for the barium to come out of Zachary’s stoma.  The radiologist said she had not seen it take that long to come out of a patient since she was a fellow.  I did not ask her how long ago that was…it seemed inappropriate.

The radiologist felt that the pooling of the barium in the spot near the opening of the stoma was most likely due to dysmotility.  I do not think that is the case – and, as you know, I spent many years in medical school….  It feels wrong to disagree with a doctor, but let me tell you why I do.  First, I cannot let myself even entertain the thought that Zack’s small bowel has poor motility now.  I just can’t.  Second, Zachary’s ileostomy has so much out everyday and usually so quickly that this does not even make sense.  If his motility was slow, I do not think we would have this volume everyday and struggle so much with low sodium issues.

My theory is the same as his surgeon from Boston and possibly his GI here.  I should ask him. I know we all agree he is intermittently obstructing.  I think his stoma is prolapsing internally.  Meaning, I think it is getting stuck on itself near the opening and preventing output from coming out from time to time.  His stoma was pretty swollen once the barium went in and was trying to prolapse, but did not.  It goes along with my theory and I want it to be right.  So there.

So what does all of this mean?  I actually have no idea.  I know that according to our visit today, it appears we have two separate issues going on.  I know that nobody wants to operate on Zack unless absolutely necessary, but the dilation and narrowing of the intestine seem like a potential surgical issue.  When Zack and I left today, the GI team was meeting in radiology for their weekly review of all the pediatric procedures completed there this week.  I know Zack’s GI will be reviewing the results.  I have no idea what to think or what to expect.  My guess is that as long as these things continue to resolve on their own, we will wait and see.  But really, I know nothing. Welcome to my world.

As always, though, my hope is that Zack’s doctors will help turn this face:

Back into this face:

Just to clarify (and to keep from freaking anyone out), at the moment he is fine.  I will update with more information when we figure it out.

Hug your babies!

~ Dawn

 

 

Special Olympics 2018

Before I tell you all about Zack’s amazing day, a health update.  This last month has been rough on Zack.  His belly has hurt since his surgery and for no discernible reason.  He has been consuming a LOT of Tylenol and Motrin.  A lot.  The good news is that those medicines help with his pain and he has not needed to be seen for anything stronger.

He will tell you that his g-tube still hurts.  I am sure that is true, but nothing is visibly wrong with it.  Sadly, we think his keloid is growing back and that stinks.  In addition, he prolapsed 4 times last week alone.  Prolapsing hurts and gets in the way of things Zack likes to do.  He does not like that.  Last Friday we had an impromptu neighborhood picnic and he did not want to miss it.  He was in pain in the shower and mad about missing fun, so he took the handheld shower head and pushed his intestines back into his body.  Because why not?  That did not feel super great, so I don’t think he will do that again.  I hope….

All of the belly pain has meant he has not been eating much.  Because Zack’s doctor increased his feeds, he has not been losing weight which is good.  But he is not gaining weight at the moment like we had hoped.  Thank goodness for feeding tubes.

Enough of the medical stuff….

Zack woke up this morning at 6:20 a.m. ready to get on the school bus, which arrives at 8:27.  Why?  Today was the Special Olympics and it is one of Zack’s favorite days of the year.

Getting greeted by cheerleaders.

This year, several of Zack’s classmates and their homeroom teacher came along to be his cheering section.  As usual, they made some awesome signs, offered lots of encouragement, and were super kind to brave the extremely frosty morning. It was 38 balmy degrees and windy as all get out at 9:30 a.m. when they all arrived.

Mrs. Solomon – Zack’s Homeroom Teacher

In addition to Zack’s classmates, Zack had several other people in his cheering section.  Mr. Tozer, his coach, has been helping Zack for the past three years.  He really knows how to motivate Zack to do his best.

Mr. Tozer coaching Zack before his tennis ball throw.

Zack’s grandma and cousin, Kelsey, were there today as well.  Kelsey has such a kind and compassionate heart for Zack.  She also helped me corral him and that is a true gift given the amount of energy Z had today.  Grandma is one of Zack’s biggest supporters and comes to the Special Olympics every year.

 

 

 

 

 

 

 

Zack also had his buddy, Dan, there to cheer him on.  I’ve written about Dan before.  This young man truly has a gift with children and especially kids with special needs.  Zack lights up when Dan is around and is always asking when he can see him next. Zack also says that Dan is his best friend because he listens to him and is kind and likes to play Lego. His parents have raised an exceptional young man!
Some other fun pictures:

Zack and his buddy, Jake, getting their tennis throw medals.

Long jump

Zack’s long jump video

Medals

100 Meter Dash

Home with his adoring fans.

And that, my friends, is all the typing these fingers can handle for one day.  Have a wonderful weekend!

Hug your babies!

~ Dawn

 

 

 

You Know You Are In Trouble When….

You know you are in trouble when your sister hears from someone else what is happening with your child and reprimands you AGAIN for not updating your blog….I really think she needs to get on Facebook to hear all the most current info.  Because she is extra amazing, I will indulge her request.  But first…enjoy this photo of my two sisters and Zack.  Carie (on the left) lives overseas and came back for a quick trip a few weeks ago.  We all spent the weekend together at Becky’s house (on the right) and Zack was able to debut his new shirt. I’m sure they will both be thrilled that I posted photos of them.  Sisterly love?

Enough of the family stuff.  When I last posted, Zack had just returned home from his hospital stay. We had been told that his surgery site would be painful and I wrote about how it really was not painful at all.  Yeah, why did I do that?

A day or two after getting home, Zack’s surgical site started looking very angry and red.  Then it started weeping.  Zack started having lots of pain.  Soon there was pus.  It was gross and evidently infected.  We headed back to the surgeon and Zack was given antibiotics which we knew would help him feel better right away.  Except they did not.

We could tell that the infection was looking better, but Zack was not feeling better.  His g-tube just kept hurting.  The pain was pretty intense and kept us from attaching him to feeds and his CeraLyte.  We could tell he was losing weight and beginning to have headaches and look unwell  Even worse, it kept him from sleeping.  Nobody in this house does well without sleep.  Nobody.

Last night was the last straw.  Zack did not fall asleep until a little after 2 a.m.  We disconnected his feeds, gave Motrin, rubbed his back, rubbed his belly, and prayed like crazy that he would just go.to.sleep.  Today Zack was scheduled to have some benchmark testing at school, but he was exhausted and I let him sleep until he woke up. I am happy to report that I took him to school in time for the test.  While he was at school, I tried to reach his surgeon and texted his GI.

Zack’s surgeon had us come in and decided that they would take out those pesky plastic bolsters that were placed for his g-tube to sit on while the incision healed.  They were sutured to his skin in four places surrounding his g-tube and we were pretty sure that they were the cause of all the pain.  You know, the pain the surgeon warned us about…that I said he didn’t have in my last post?  Just reminding myself that I said that.

Because of Zack’s angry badger history, they had an OR scheduled for Wednesday in the event that he was unable to handle the procedure.  It was only four little sutures, but things smaller than that have caused him to lose his mind before.

I am happy to report that Zack did incredibly well today.  He was able to have his sutures removed with the appropriate amount of pain.  Before we left, we made sure we could get Zack’s g-tube extender placed without too much pain.  We were also able to see one of his Wound Ostomy Nurses who helped form a barrier between the wound and his ostomy belt so that it would not rub on the raw skin.  And most importantly of all, he was cleared to participate in all of his normal activities once again.

Jim and I knew that Zack had lost weight and we were curious to see how much.  As part of Zack’s vitals check he was officially weighed.  Turns out he has lost between 3-4 pounds depending on which scale we use.  We look forward to getting calories and sodium into him tonight.  We are also hoping his appetite returns quickly. Pain and low sodium can result in decreased appetite.  Over the past few days he has eaten so little it is amazing he has any energy.  On Saturday his entire caloric intake consisted of half of the crust off one piece of pizza.  Yesterday he had a few bites of cereal and a few bites of ramen.  Tonight he actually ate two forks full of noodles and a jello cup.  Baby steps.

On Friday we will see Zack’s surgeon on more time to make sure he is continuing to heal.  I am sure that he will…..

I leave you tonight with a photo I just found on my phone.  I love finding surprises like this, but I am not so sure if Cap loved having his picture taken!  He seems to be saying, “Save me from all the love!”

Hug your babies!

~ Dawn

 

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

Surgery #10

Quick update.  Zack started complaining of g-tube pain in school on Tuesday.  His school nurse told me his g-tube area looked swollen.  Being an awesome mom, I told her it always looks that way.  I was wrong.  She was right.

That evening Zack was in a LOT of pain.  We spoke with our friend who suggested contacting his doctor and taking him in to the ER.  We texted Z’s GI doctor who suggested the same thing, but at that point it was 11:30 p.m. and Z had finally fallen asleep.

Yesterday I figured I could probably get an appointment and avoid all the germs in the ER.  Wrong.  Off we went.  Saw Peds right away and the surgery team came quickly as well.  Did a contrast study to show g-tube was placed right and noticed the balloon looked defective.  Z still in pain, so we decided he would come back in the morning to have the area numbed and to get the tube out and a new one resized.

Today started off that way, but our GI nurse extraordinaire suspected it was actually stomach mucosa.  Doctors came in and agreed.  Surgery called again.  Several hours later it was determined that this needs to be fixed.

Currently we have three different scenarios of what will happen.  The easiest involves an overnight stay.  The more complex a stay of 4-5 days.  Zack will be admitted in the morning with surgery being an add on late in the day.  We will keep you posted (Dad, Carie, Sandy).

Hug your babies!

~ Dawn

Rare Disease Day

It’s Rare Disease Day.  You may be wondering what the heck that means.  What is the purpose of Rare Disease Day?  According to rarediseaseday.org:

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”

In honor of the day, Zack decided he wanted to paint his face like many other people with rare diseases are doing.  He is hoping that his friends will ask him what his face paint is for so that he can explain rare disease day to them.  He wants his classmates to know that rare diseases affect a lot of people.  In fact, 1 in 20 people will live with a rare disease at some point in their lives. He wants them to know that there are many different types of rare diseases, many go undiagnosed (Zack), and many have no cures.  If you live near us and see Zack today, be sure to ask him about his face!  Just look at that cuteness:

I hope that seeing Zack will inspire you to read about rare diseases here. Chances are you know someone besides Z with a rare disease.  Maybe this will give you a better understanding of how families like ours live.

I am finding it hard to find a way to segue into my next topic.  Please forgive me.  My brain is tired.

Zack is currently doing about the same medically, although these past few days have been a bit challenging.  His belly is currently distended and painful.  He is able to eat and go to school and play, so it is not a medical emergency.  However, his stomach is noticeably bigger and his output is noticeably lower.  I spoke via text with his doctor for our monthly Z update and told him my concerns.  He agreed with my suspicion that Zack is probably having an intermittent partial bowel obstruction.  This is not new for Zack, sadly. My concern is that partial bowel obstructions can lead to complete bowel obstructions. Jim and I feel confident that he is doing okay for now.  My mama radar is definitely on alert, but at a low level.  I’m hoping it stays that way.

Speaking with Zack’s doctor is always reassuring and having him agree with my (our) assessment helps ease my anxiety. I wish it could help Zack feel better as well…but I will take what I can get. Zack’s doctor reminded me that given his surgical history, we do not really want to mess with him – unless it becomes worse.  Jim and I totally agree. The lesson here?  Go out immediately and buy stock in Tylenol and Motrin.  We are single handedly increasing their value.  You are welcome for the tip.

In addition to his belly, Zack is continuing to have a hard year in school.  His ADHD medication continues to be an issue.  Between the Quillivant debacle and trying to appropriately dose his new medication, his ability to focus has been severely affected. He is struggling in many areas, but especially in math.  We had an IEP meeting today to discuss many things.  Hopefully we have come up with some new ideas of ways to help Zack be successful in school.  Watching him struggle is hard and frustrating and exhausting.  Jim and I continue to advocate for him and appreciate all of the ways his school is trying to help him.

Although all of these things are challenging for Zack, he continues to meet each day with a smile.  I am constantly amazed by that and grateful to be his mom.

Hug your babies,

~ Dawn