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

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

Update

After my last post, Zack’s doctor and I decided that it would be best to have Zack seen in the clinic.  Over the past two weeks, we have avoided hospitalization three times.  I think I needed the visit for my mental health as much as Zack needed it for his physical health.  One of the things that is hard to understand about living with a child who is chronically ill is that they can be fine one minute and really sick the next.  As a parent, it can become tricky to navigate the areas between when he is not quite himself and when he is needs to be seen.  Trying to determine when to call the doctor, when to stay home and hoping you are not putting him in danger can be emotionally exhausting.  Fortunately for us, this year we have enjoyed a nice respite from the hospital.

At Zack’s visit with the doctor we decided that it was time for Zack to have some imaging done.  We had been discussing doing this for some time.  Given his crazy high output a week prior and three days in a row of limited output (along with a prolapse thrown in to make things even more fun) it was time to be checked.  We tried to get him into radiology that day, but they were completely booked.  That made me a bit sad because the best time to see what is happening is when he feels bad.

The next morning we headed back to Walter Reed for a small bowel follow through. This test requires drinking barium.  Barium is a nasty, chalky white substance that makes Zack literally gag.  After a few swallows and a couple of gagging episodes, we decided that we should try giving it to him through his g-tube.  Have I mentioned how much I love that thing?  Maybe once or twice?

Zack’s small bowel follow through was done using fluoroscopy.  Fluoroscopy allows the radiologist to see how the intestines are moving in real time.  Zack’s intestines moved the barium pretty quickly until a spot near the end.  Then it seemed as though the barium kind of pooled in one spot and took forever to go the last little bit up and out of his stoma.  Evidently this is normal and no issues were found.  That frustrated me, but I should not have been surprised.  Zack has had this test before.  At that time he was really sick and no issues were found.  Zack’s doctor had warned me the day before that we only had a 30% chance of finding something, but still I was hopeful.

The hardest part of the test was hearing Zack ask the radiologist if she had found the problem yet.  He really wanted them to find the reason his belly was hurting.  Zack’s doctor helped put things into perspective.  He said that, though frustrating, not seeing dilated loops of bowel or obvious areas of poorly functioning intestine decreases the likelihood of needing another surgery soon.  That is a good thing!

On Friday Zack was able to attend school.  He did ask for Tylenol for his belly, but otherwise had a seemingly normal day.  Friday night he had a great time playing in the neighborhood.  I’m attaching a video of one of the many reasons I love it here (it may take a few minutes to buffer).  All of the kids were playing lacrosse when this happened:

If this does not give you warm fuzzies about how great kids are today, then I do not know what will.  Thank you to Liam for sharing this video with me.

Saturday was fun as well with a Memorial Day gathering at a friend’s house.  Zack’s stoma was really big that day, but he was running around like a maniac and having such a good time.  Sunday came and he slept until 8:30 a.m.  I had to check and make sure I was not dreaming.  Zack’s output was really high again.  He had a good day, but was exhausted at bedtime.  Falling right to sleep is not a thing that happens often here and he was out before we said prayers.

Early Sunday morning at about 2:30 a.m. (my favorite time of day..) Zack came in to have his bag emptied and was asking for ice water.  When I emptied his bag and saw that he had 600 ml in it, I was a bit worried.  I got an extra dose of CeraLyte in him, gave him an extra Imodium and two sodium chloride pills.  Then he started complaining that his belly hurt and needed to be rubbed.  Soon he was asking for Motrin and just could not settle.  He was acting as though he was going to vomit and just generally freaking me out.  I finally got him to sleep about 3:30 in the morning, but I was not thrilled.

Zack and I had a quiet morning in the basement.  He beat me at MarioKart.  I am pretty sure he cheated…just kidding.  He also spent the morning licking salt from a bowl, eating sodium pills and drinking water….as kids do….right?

See that little bowl of white stuff?  That is salt.  He licks it like candy.  See that white pill?  That is sodium chloride.  He gets 7 a day, in addition to his CeraLyte, and is often still low sodium.  That’s a LOT of sodium!

Jim and I pumped him full of CeraLyte again to help bring his levels back up.  I tell you all of this to illustrate to you that while Zack is “fine”, something is not right.  The test may show that his intestines are not obstructed, but this weird high output, no output thing is unusual.  Do we need to go to the hospital? No.  Do we need to text his doctor? No.  Do we have to watch him?  Yes.  It is hard to relax when things are just not right.

People often remark that Zack looks great.  He does.  It is hard to believe he was not feeling well earlier when they see him running around like a maniac.  It is hard for Jim and I to believe at times as well.  But, that is how it goes with him.  Jim likes to say it will either get better or it won’t.  Profound, I know.  Today we are hoping that Zack will perk up and that the sun will come out so that we can go to the pool.  We have fun things planned for this day.  And that is what we do.  We try to live each day as if everything is alright.. until it isn’t.  Otherwise we might just go crazy.

Update to the update:

Zack did go to the pool.  It was freezing!  His buddies from our neighborhood were there and he was unusually quiet.  His cousin called and invited him to our local fair.  We went.  He had fun and went on rides, but was quiet.  Zack is not quiet.  Thankfully, last night was uneventful.  I sent him off to school today with a kiss and a hug and  fingers crossed that today will be a good day.

Zack and Tom at the fair.

Hug your babies!

~ Dawn

Sickness, Graduation, Fun and Waiting

What a whirlwind this past week has been! Let me start at the beginning.

One week ago, Zachary’s ostomy went crazy in the output department.  A normal ileostomy should produce between 300-500 ml of output a day.  Zack has never fit into that category.  His output usually averages about 1,000 ml out per day.  Last Sunday, for no apparent reason, Zack’s ileostomy had 2,650 ml out and our boy was illin’…..a word meaning feeling pretty darn sick.  Previous to this, Zack’s highest recorded output was 2,300 ml while he was in the PICU.

Zachary was so sick that HE asked to be taken to the hospital for an IV.  Yeah.  He never asks to go to the hospital and asking for an IV?  Well, that has only happened one time before three years ago when he had a small bowel obstruction.  Obviously, I wanted to take him to the hospital right away.  Jim, being the man of reason in this situation, thought we should wait a bit and try to manage at home.  I agreed, with the stipulation that we text his doctor.  His doctor advised us to have a low threshold for taking him in, to bring him in for labs in the morning if we decided not to come in, and gave us instructions on how to rescue dose Zack with CeraLyte.

This is the part of my story where I sing the praises of Zack’s g-tube. His g-tube is a permanent tube that goes directly into his stomach and allows us to administer medications as well as formula.  The idea of a permanent feeding tube in Zack’s stomach took some getting used to, but now I cannot imagine his life without it.  I actually wish we would have gotten one sooner.  This little invention allows us to manage a lot of things at home that once would have landed Zack in the hospital. It is a wonderful invention and I am so very thankful that he has one.

Back to my story….later that evening our guy said that he really thought he should go to the hospital. Again, I was all for that.  Jim thought we should ask our friend, Sarah, to come take a look at Zack and take his vitals first.  His heart rate was elevated, but his blood pressure was OK-ish.   Sarah advised that if we wanted to stay home we would need to check on him every few hours over night.  Jim really did not want to go to the hospital and have Zack admitted when he was OK-ish, so we stayed home and monitored Zack.

As much as I hate to admit it, that was probably the right call.  Zack was a bit more lively in the morning, but still not great.  Zachary’s lab work that morning showed that he was low in sodium and chloride and had signs of dehydration.  All of that WITH his g-tube.  Happily, his output slowed down and his doctor talked me off the ledge.  I was really not comfortable with how sick Zack had been the day before.  We were getting ready to head to Texas and I was worried about getting his sodium levels back up before our flight.  His doctor said that while IV fluids would bring his levels up in a much more controlled way (and quicker), being that his output was back to a reasonable level we could bring his levels back up at home with his CeraLyte.

Jim and I believed that Zack had a 24 hour bug and that he was fine.  We flew to Texas on Thursday and Zack was a dream on the plane.  He sat quietly and did not fidget.  That should have been our first clue that something was amiss.  We arrived in Houston to spend the night with family.  Zack spent the afternoon playing with his cousins and having a terrific time.  Overnight he developed a fever and woke burning up.  But he had output and we knew his belly was OK and we needed to get to Austin for Drew’s graduation at The University of Texas.

Texas cousins.  We call them M3 – Mason, McCain and Morgan.

When we arrived in Austin, our boy was still burning up.  Not only that, his appetite was non-existent, his head hurt and his output was crazy.  When we are at home, Jim and I measure Zack’s output with a urinal.  I refuse to travel by plane with that nasty thing and we have gotten pretty good at estimating.  We knew his output was high, but we were prepared with the appropriate amount of CeraLyte.  Zack continued to have a pretty high fever for a bit over 48 hours.

The morning of graduation Zack woke moaning and really feeling bad.  Jim and I were concerned that we might need to take him in to be seen.  The second time in one week!  We dosed him with Motrin, had Jim’s brother and wife sit with him while we went to the Master’s Convocation in the morning (thanks David and Sylvia) and started looking into which hospitals were close to us.  We made a plan for what we were going to do when we got back to the hotel and who would miss the commencement ceremony that evening.

As luck would have it, one of Zack’s nurses from Walter Reed lives in Austin.  We were able to talk to him about what was happening with Zack and he told us which hospital would be best for Zack.  When we returned to the hotel, Zack was a bit perkier.  He still had a good fever, still was not feeling great, but no longer moaning.  His fever continued through the day and he did a lot of resting on me.  However, we decided with some Motrin and snuggles that we would chance graduation.  It was outdoors and we would not be infecting anyone with his germs.  Zack’s output was crazy again, but we continued with lots of CeraLyte and hoped things would calm down.

Can you see Zack under there?  He was freezing and had a headache and generally just felt bad.  This is how he spent most of graduation day.

On Sunday morning, Zack’s output was still high, but his fever was gone.  We started feeling much better about the situation.  We had a fun lunch visiting with Drew and Lindsey and our dear friend, Chris.  Chris was a nurse at Walter Reed and one of the best we know.  He took care of Zack at his sickest and we are forever grateful.  We were so excited to see him!  Zack had not eaten that day, but we knew he had formula overnight and were not too concerned.

Here he is at lunch with Chris.  He looks great, right?  Perfectly healthy.  Who knew….

After lunch, Zack wanted to be carried.  We had put a new wafer on before lunch and there was nothing in his bag.  Not one little drop. He said his belly was hurting.  All things which tell us things are not going well.  We went back to Drew’s school and walked around.  Every time we tried to have Zack walk, he sat down on the ground and said his belly hurt.  Still no output.  Jim and I once again started to be concerned.  How did this child go from so much output to absolutely nothing?  Was he obstructed?  We really think he was.  His behavior fit perfectly with an obstruction.  It took over 6 hours for his output to start back up.  Once it did, the flood gates opened and Zack was really hungry and his energy returned.

Yesterday it was time to fly back home.  Zack had a normal amount of output overnight.  His fever was gone.  However, he woke up congested and with bloodshot eyes and a headache.  Once we got one the plane, Zack’s output once again stopped.  Once again, in the late afternoon Zack perked up.  His output started back up and he was ready to go.  Until dinner..when he said he did not want to drink too much because his brain was telling him that his belly hurt.

We got home, had a shower, got into our own beds and Zack said he felt better.  He once again had a normal(ish) night.  There was a little output.  We were happy.  When he got up he seemed OK, so we decided to send him to school.  We knew he did not eat his normal breakfast.  He told us he was full.  However, he ran to the bus and told everyone he felt awesome.  And then the phone rang….it was the school nurse.  Zack had a belly ache and was asking for Tylenol.  She gave that to him and sent him on his way.  The phone rang again about thirty minutes later.  Zack was prolapsing a bit and still did not feel well and was acting unwell and even missed recess.  I brought him home and here we sit.

Jim and I believe that last Sunday was the beginning of whatever crazy is going on now.  When Zack gets sick, his ileostomy has higher than normal output. What has caused him not to have output these past few days is still a mystery.  It has happened before and we have attributed it to positional obstruction. It used to happen a lot during the school day.  But this is a bit different in that.  On Saturday, Zack was walking around one moment and then the next he was very unwell.  We are hoping that it is still related to his virus and not a physical obstruction.  There is nothing we can do about it at the moment besides wait and see.  If you know me at all, you know that this makes me crazier than normal.

The good news is that we are home and close to our normal doctors.  If anything happens, we feel much more comfortable with the care available here than in Texas where nobody knows his story.  Zack has said he will let me know if he needs to go to the hospital and Jim and I are on alert.  Still, the only thing we can really do is wait and see…..

As I wrap up this post, I want to share some pictures of a big event in the life of our family.  Drew graduated on Saturday with a Master of Aerospace Engineering degree from the University of Texas at Austin.  Even though Zack was sick, we were still able to enjoy the weekend celebrating Drew with family and friends.  Drew has worked extremely hard for many years pursuing his dream.  Jim and I are so proud of him and very thankful to everyone who has had a part in mentoring, teaching and loving our son.  I am also grateful that we were able learn about the great history behind the Longhorn traditions.  We have never seen such spectacular graduation ceremony before.  It was a mix of a parade, a concert and Disney fireworks and something I will always remember….and I finally learned the words to “The Eyes of Texas” and how to properly “Hook ‘Em!”

Before Commencement

Drew and his girlfriend, Lindsey.  Aren’t they cute?

After the Masters Convocation in the morning.

Last picture.  I promise.  This makes me happy because it was the moment we first saw Drew and Lindsey.  I think it captures how happy Drew was/is to be D.O.N.E. with school…for now…

Hug your babies!

~ Dawn

Just A Normal Kid

Today is Monday.  Every Monday we head to the hospital so that Zack can have labs drawn and work on some other things.  We leave our house at 5:45 which is brutal for Zack and for me.  At our last visit, Zack’s sodium levels were doing so well that we were allowed to miss a week.  We still had to drive in last week for another appointment, but we got a week off of labs.

This week both Zack’s doctor and main nurse were out which meant our routine was off.  We usually arrive and take his urine sample to the lab in a STAT bag so that by the time he finishes his first appointment those results are back.  Today the lab said they could not find his urine.  Interesting.  Zack produced another sample and we headed down to the lab to see what had happened to the first sample.  Because Zack’s regular nurse was out, the orders for his labs were not in the computer.  The technician who received it could not find the orders, so he placed the sample in the refrigerator. That would not have been bad but, unfortunately, he forgot to tell the other people in the lab it was there.

Two and a half hours later, the results were in and showed his urine sodium was low again. The actual number was 11.  Below 10 is undetectable and what we are trying to avoid.  That meant Zack got to have another blood draw.  Not many of the nurses in the clinic do PICC-line blood draws, but one of our favorite nurses does.  That made Zack (and me) pretty happy.  Zack also sweet talked her into changing his PICC dressing since he had been waiting so long and did not want to waste his precious after school time getting it done at home with his home nurse.

Because his level was down we “get” to go back again next week.  It is not too terrible, though.  We enjoy seeing all of our friends at the hospital.  Zack likes giving all of his nurses hugs and I like talking to them and learning all about their lives.

After all of the delays today, Zack only made it to the last hour of school.  He was not too disappointed because that hour included music class and PE.  Zack loves PE and is so happy that he is allowed to participate once again.

Zack has been dreaming of the day when we would finally allow him to participate in “real” sports.  Last summer he had tennis lessons but missed a LOT because he had surgery unexpectedly.  Zack has had swim lessons but had to stop due to prolapsing and surgery.  Do you see a theme?

Last week his good friend asked him if he would like to go to Buddy Day at his karate school.  We knew there would not be any physical contact involved, so we figured his PICC-line and stoma would be safe. Since we knew it would be safer than running around the neighborhood like a maniac, Jim and I decided to let him try it out.

Zack was grinning ear-to-ear the entire forty minutes of class. He LOVED it!  Who cares that he had trouble staying focused and stood on his head?  He never had the chance to play T-ball or soccer and everyone knows that kids spend plenty of time doing that or picking flowers or looking at the clouds during those sports.  Who cares that he had trouble moving his body the correct way?  He was so excited to be learning karate.  While I do not have the words to capture his enthusiasm, I do have pictures – taken through a glass window on my blurry phone.

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A glimpse of Zack’s smile!

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I think they were working on their reflexes.

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While we do not know if we will actually sign Zack up for karate, tonight was awesome. Zack thinks having a uniform would be cool.  (He was disappointed when he learned he did not need one for tennis.)  We still need to run it by his doctor and talk to the school to see how comfortable they would be having a child with a PICC-line, an ostomy, and a g-tube in class or if it would even be possible.  We know there is no contact or sparring at the lower belts but even so…we need to give it more thought.

Even if Zack does not join karate YET, watching him be a participate in a sport was fun. Seeing him participate in a normal childhood activity was exciting.  His smile was contagious and he was so happy.  I am looking forward to more days like this!

~ 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.
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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.

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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

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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…..

All Done

Zack’s surgery is over.  To say his behavior was abysmal would be an understatement, but I cannot think of a better word to describe it.  Be glad you did not have to witness it.

This was the first time Zack was not admitted before a surgery, so we had to report to the Same Day Surgery unit.  They were briefed on “Angry Badger”, but they had no idea what they were in for.  All that happened when we checked in was some vital taking and getting EMLA cream on his hands for his IV.  Then they had us walk down two long hallways to the OR.  That is when things started to fall apart.

Zack started getting anxious on the walk of doom.  He started trying to rip his ID bracelets off.  He tried to take his clothes off.  All of this while shouting that he was not having surgery ever again!  He was also growling because he was so angry.  But wait, there’s more!  Once we got into the PACU he really fell apart.  See, abysmal is not a strong enough word.  There was screaming, kicking, biting, pinching, fighting, you name it.  It was awesome.  A parent’s dream…..of the nightmare variety.

My sister’s friend is the head of some part of the anesthesiology department and he was there today.  We did not know that until Zack lost his mind and everyone else decided they could not handle our sweet cherub.  Zack HATES the sedation mask and would prefer to get his IV first.  He was so upset before they tried to start his IV that his veins were not cooperative. They finally had to give him a shot of ketamine to knock him out while we held him. They eventually got an IV started in his ankle.  By the time they wheeled him away, Jim and I were exhausted and embarrassed and also sad for Zack.

Happily, for everyone’s sake, our story improves from there.  Zack’s surgeon planned to cut off the weird growth and send it to pathology.  If it came back as gastric tissue, he was going to take down Zack’s g-tube and make a new one.  This would require us to stay overnight.  The results came back as NOT being gastric tissue, but rather scar tissue.  That meant that his doctor could clean up the area, switch out his long tube for his new button and get Zack out of there.  We have decided to refer to this surgery as a procedure from now on…a glorified office visit with general anesthesia thrown in for kicks.  That means Zack is now back to “only” having seven surgeries.

We are now back home.  Zack is still a bit wobbly, but he is not tired anymore.  He is cleared officially for PE and recess, but no contact sports.  Jim and I have spoken to his surgeon here and the anesthesiologist about what can be done differently next time so that Zack does not lose his mind.  I think the best plan is to just stop having surgery.  Time will tell.  Glad that is over!

~ Dawn

 

Colorado and Surgery

I am happy to report that Zack has been doing pretty well the past few weeks.  Yay!  We have been watching his stoma carefully as it has been “trying” to prolapse.  Every few days or so we can see the inside of his stoma trying to push through.  So far, his body is keeping those pesky intestines inside where they belong.  We are crossing our fingers that it stays that way for a long time.  That would be awesome.

We have also been having a little issue with his g-tube.  Zack has been itching like crazy around the site.  When it first began, we saw our ostomy nurses and they thought it might be granulation tissue.  Granulation tissue is common around g-tubes and is red, raised, oozy tissue that grows around the gastrostomy hole.  It is usually treated with silver nitrate and goes away.  When Zack’s was treated it hurt like crazy and the tissue grew larger instead of going away.

We saw Z’s surgeon last week and he said the tissue is actually stomach tissue and it needs to be surgically fixed.  Tomorrow is the day and we are pretty glad. When Zack’s g-tube was first placed it had a long tube coming from his belly. The long tube is kept in place for eight weeks until the body has time to form a tract from the outside into the stomach.  After that, this long tube is replaced with a button which almost flush to his skin.  Zack’s surgeon hopes to put that button in tomorrow as well.  I actually love his g-tube and am so glad he has it.  It makes getting nutrition into our guy so much easier.  It is a great way to give medication and we can give him extra fluid when he is a bit dehydrated.  I think he will like it much more when it “fits” better and is less oozy and weepy and painful.

Last week after we scheduled Zack’s surgery, we hopped on an airplane and headed to Colorado to see our oldest son graduate from college.  It was a whirlwind trip, but we were able to stop and see Zack’s buddy Logan and his sweet mama Stephanie.  Zack and Logan were in the hospital together here in Maryland and Zack talks about Logan all.the.time.  His mom is pretty awesome as well and I have been blessed by her friendship.  The kids played while it hailed about 6″ outside.  Nope, that is not a joke.  We waited a little bit too long to get pictures as you can see.  Zack and Logan are not amused, but Stephanie looks great.  You can read more about Logan on his Facebook page here and, if you live in the stone age and do not have Facebook, here is an amazing article about our friend.

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Once the hail storm let up and we de-iced our van, we headed up to Boulder to see the graduate.  Zack was so excited and jumped out of the van and ran into his brother’s arms for a big hug.  I wish I had a picture, but here is one later that day.

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Here is one with all three of my guys cheesin’.

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Graduation itself was rainy, cold and really pretty miserable.  I give you exhibit A:

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Later in the day it stopped raining and we headed to Pearl Street for lunch and some entertainment.  Little did we know, Zack would be the entertainer.  He was a street performer’s helper.  Here he is as the guy does a back flip over him.

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Another of Zack providing child labor.  I would say free, but the guy paid Zack six bucks for helping out.  Zack was thrilled and declared that he was rich.

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Before leaving, Zack’s big brother showed him a dinosaur.  Zack was not sure if it was real and it kind of scared him.  I do not think the store had to worry about telling Zack not to touch!

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We are all very thankful that we were able to attend Drew’s graduation.  We are thankful we got to see our friends.  We are thankful that Zack’s g-tube could be fixed this week instead of last and that his stoma is holding steady for the moment.  We will update you after his surgery tomorrow.  It should be quick and easy and not require staying overnight.  Fingers crossed.  I leave you with a picture of our favorite graduate.

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Hug your babies!

~ Dawn