Thrive Camp

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

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

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

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

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

Zack admiring the horse he helped to paint.

Come on!  How cool is that?

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

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

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

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

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

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

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

Hug your babies!

~ Dawn

And Carie S. …….you are welcome…..

 

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Vacation and Boston

Oh vacation, how I have missed you so.  Our family had a great time visiting family in Connecticut, playing in Bar Harbor, Maine and exploring Boston between doctor appointments.  Here are some of our highlights:

Boating in Connecticut.  Zack’s first time on a fishing/lobster boat and he loved it!  He was a man of many questions and is forever bonded with Captain Don.

IMG_20160813_231343_01Zack helping Captain Don drive the boat.

IMG_20160813_162355656Jake and Jim could get used to Zack doing all the work.

IMG_6164Zack and his shark.  Not bad for a first fishing trip!

IMG_20160813_220526112_TOPThe Co-Captains relaxing after a hard day on the water.

Exploring Acadia National Park.  I am not sure how we have so few pictures of this.  Here are Jim and Zack on top of Cadillac Mountain trying to pick up one of the islands in the harbor.IMG_6152

Bar Harbor adventures.  Jim, Zack and I took a 4 hour sea kayaking tour.  See those islands in the picture above?  We paddled to the third and took a break.  Then we went around the third and back into shore.  We saw some porpoises and bald eagles.  Happily, we did not see any of the sharks that also inhabit the harbor because that would have freaked me out.

IMG_6118 IMG_6110We rode the carriage trails in Acadia National Park on bikes.  We ate popovers at Jordan Pond, frolicked on Sand Beach, drove around the entire island and shopped and ate and had a grand old time.  Zack and I also went on a date on Diver Ed’s boat.  Diver Ed scuba dives into the harbor and videos the ocean floor as he goes.  The video is broadcast on board.  Then he comes up with some of the creatures he finds down there and the kids get to touch them all before releasing them back to the ocean.  Zack was so enthralled with the whole thing until the touching part.  He finally worked up the nerve to touch a few things.  Can you tell how hard it was for him to do it?

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After a week of fun, we headed to Boston to see Zack’s doctors.  First we met with Zack’s surgeon.  It was strange to see her in a new hospital, but she was as awesome as ever.

While Zack is currently doing better than he has in years, we still have some concerns.  You may have noticed that I have been talking about how his stoma has been swelling which constricts his output during the day and then goes back to normal when he rests.  His surgeon and doctor here both feel he is prolapsing internally.  One thought is that where his stoma was stitched down internally actually worked this time, but his intestines before that point internally are still trying to get out.  We think they are getting stuck at that point, cutting off the flow.  Thankfully things have been resolving well so far, but it is not supposed to be happening.  We have a plan in place now for IF things go wonky.

Today we met with one of the leading pediatric motility experts in the nation.  He asked us lots of questions.  He said that Zack’s case is interesting because there is a lot going on that does not make sense….yet.  He is hopeful he can figure out what is happening with Zack.  He did say that just because Zack’s small intestine manometry test was normal does not mean his small intestine is functioning normally, just that things are being pushed through.  We talked about Zack’s biopsies that showed eosinophilic ganglionitis, the possibility of autoimmune issues and other things, but he wants to review all biopsy slides, testing, fluoroscopies, manometries, CT Scans…basically everything that has already been done…for himself before giving his opinion.  Jim and I appreciate that and think it is a good idea.  Of course, Zack’s files from both Cincinnati and Walter Reed are so incredibly large that it will take some time for him to get through it all.

The doctor said that there are several drugs we can try to help slow down Zack’s output.  He wanted to talk to his surgeon about a few things first, so we do not have a plan for that yet either.  Even though we left without a plan, Jim and I felt that he was very thorough and we really appreciate that he wants to understand why Zack’s body is behaving this way.  Why does he have secretory diarrhea?  Why doesn’t his colon work?  Is there also a problem with his small bowel?  All questions his other doctors have asked before and have not been able to answer.  Somehow I feel good about his method of investigation and have hope that perhaps he will be able to narrow things down a bit more.  It is good to have hope.

While we were in Boston we were able to connect with some of dear friends that we had not seen since 2011.  We spent a great day at their home catching up.  Why do we wait so long to do these things?  Oh yeah…intestines.  We were also able to see a friend from our time in Minot.  Her daughter has been in the PICU since DECEMBER!  December people!  I am happy to say that her daughter is getting close to getting out of the PICU and to finally going home.  It is amazing to see her faith and strength.  It was a blessing to me to be able to spend the evening with her.

So there you have it, an exceptionally long update.  We are so thankful for our vacation and our time in Boston.  We are thankful that we had a fun time as a family.  We are happy that we were able to come to Boston for a non-urgent visit.  We are happy to have scoped out the area, found a hotel close to the hospital and to know we have friends close by.  While we did not have time to see all of our friends here, we know we will be back! Until then…

IMG_6104Hug your babies!

~ Dawn

Zack’s Summer Bucket List

Time for summer vacation with a HEALTHY boy!  Yes, I wrote that.  No, I am not worried about jinxing Zack.  I mean, we still have to track his sodium every other week, but that is a piece of cake.

This is the first summer we have had in recent history with the very real possibility of making plans and having them actually happen!  I had Zack make a list of things he would like to do over the next few months.  I’ll share them with you in a bit, but first an update on Zack’s medical stuff.

Zack’s sodium level continues to be detectable with an odd off week every now and then.  His stoma is behaving, mostly…We are watching a rather new development.  While Zack is not prolapsing, his stoma is swelling with exertion and is painful again.  Zack has begun assuming his pain position when this happens and also asks for Motrin more regularly.  When his stoma swells, his output slows way down.  Happily, his output starts back up again once he actually relaxes.  I know I always say his output is too high and now I am complaining about it slowing down.  The problem is that his output is artificially slowing.  It is slowing because his stoma is swollen and blocking the flow, not because it is actually doing what we need it to do.  Jim and I are not overly concerned yet, but we are definitely keeping an eye on the situation.

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The famous pain pose.

In addition to Zack’s medical update, I have a school update.  Zack had a big neuropsychology appointment at the Kennedy Krieger Institute today.  Zack underwent 5 hours of testing, and we received some interesting news.  Zack’s cognitive ability is significantly higher than his performance in school.  The doctor (PhD, not MD) believes that his cognitive ability is strong enough to be able to graduate from high school, but he will continue to require special attention.  We also know he’s not crazy, we had him tested.  I do not have the official written report yet, just what Jim and I wrote down and our memory of what was said.  Because of that, I am afraid to write more about it as I might get the terminology wrong or say something incorrectly.  You will just have to stay tuned for a more precise update later.

Now, about that summer list.  I love my Zack.  His list makes me giggle.  One week into summer and he has already accomplished almost everything on his list.  I might have to help him think of more fun things to do.  I keep saying this is the summer of Zack!

  1. Get socks without holes.  Um, child, if you put your shoes on before going outside as directed, your socks would last a LOT longer.  Just sayin’.  The boy now has many pairs of socks without holes.
  2. IMG_1621Learn to swim and go to Aunt Becky’s to swim lots of times. Technically we are still working on this, but he is in swim lessons so I count that as being done.  All he has left is to learn to breathe.  You know, the most important part of being able to be in the pool without your parents.
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  3. Play tennis.  Tennis lessons began last week and Zack actually hit the ball several times –  in the same lesson.  That is a huge improvement from last year.  AND he actually paid attention to his coach during listening time.  Score!  Sadly, no pictures.
  4. Go bowling.  We learned that Zack is a bit OCD about color coordinating bowling balls on the racks.  Who knew?IMG_5915
  5. Play WiiU.  Bribery for good behavior wins again here.  Zack got a new game for behaving exceptionally well today during his hours long testing.  That is pretty hard to do when you have a pretty good case of ADHD and your meds wear off.
  6. Go to the library.  Zack signed up for the summer reading program and is eagerly reading to earn tickets for raffle items at our library.  Bribery really works for this kid.
  7. Get a puppy.  Well….now here is one that we have not yet accomplished.  BUT since Zack is doing so well medically, we are actually in the process of figuring out the puppy situation for either the fall or spring.

There you have it folks.  I am enjoying posting happy things.  I would really like to make that a habit.  Are you listening stoma?  I am enjoying having my boys home for the summer.  Most of all, I am enjoying having a healthy Zack and hoping it continues!

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Hug your babies!

~ Dawn

Pity Party Terminated

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

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

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

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

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

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

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

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

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

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

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

Prolapsed Stoma

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

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

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

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

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

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

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

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

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

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

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

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Zack’s Surgery Update – October –Surgery #3

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Friday Morning.  5:30 a.m.  Don’t we look chipper?  Our son, Jake, created an event on Facebook called Blue Friday.  He invited his friends and my friends, and they invited their friends, to wear blue on Friday to help remind people to pray for Zack and his surgeons.  Our family was overwhelmed with the response.  Thank you to all who participated.  Jim and I wore blue as well.  Here we are just before heading down to surgery Friday morning.

Zachary’s surgery ended up taking 3 hours.  I was fortunate enough to be allowed to go all the way into the OR with Zack and to stay with him until he was asleep.  I was amazed at how many people were actually in the OR.  Zack had two anesthesiologists.  One worked the general anesthesia aspect and the other worked on Zack’s epidural.  Zack’s surgeon was there as well as his residents.  The head of pediatric surgery was there.  Our GI doctor was there and a host of other people I should probably know, but they were all masked up.  I felt confident he was in great hands as I left, but it was still hard to leave.

During the surgery, our GI doctor came and gave us a little report.  It was comforting to get some news that way.  The head OR nurse called and let us know that surgery was going well and that Zack was stable.  She called again to let us know they were getting ready to close and things were still going well.  Happily, Jim and I were able to wait in Zachary’s room.  I was able to shower, we were able to eat breakfast and just hang-out together in private rather than in the big OR waiting room.  I appreciated that because I find that waiting room incredibly stressful.

When Zack’s surgeon came to get us, he looked happy.  That helped me relax right away.  He explained that when they opened Z up there was very little scar tissue.  This was great news as this was his third surgery and we still have another big one in a year to reattach his intestines.  He explained that Zachary’s stoma was being encircled by his bowels and those bowels were intermittently constricting the flow of his intestinal contents.  He said this is called an internal hernia.

The surgery team took the bowel loops out to inspect them and then “took down” Zack’s ostomy.  This involved disconnecting his stoma, cutting about 1 1/2 ” of small intestines off, and sewing up the ostomy site.  They then decided to make another ostomy site back on Zack’s right side.  They placed it just beside and a smidge below his mucus fistula so that they could save that as well.  If you’ll remember waaaaay back to June, his original loop ostomy was very similar to this.  A good thing about this setup is that his mucus fistula will now be contained in his ostomy bag again.  This makes our maintenance time much easier at home and at school and every other place we go.  Zack’s mucus fistula is incredible itchy on his skin and he was forever scratching at it and pulling off his bandages.  This will no longer be an issue.  Yay!

We met Zack just as he was being moved into the PICU.  He had a lot of tubes in a lot of places, but we expected that.  Here is a picture:

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The black thing in the upper left corner is the bag containing his epidural meds.  His epidural wire is yellow and taped down his back.  He also has a catheter for urine, and another IV in his left ankle.  When we first saw him he was also hooked up to an oxygen mask, but that was disconnected pretty quickly.  I don’t know if you can tell in this photo, but he is pretty pale.

The rest of Zack’s day was spent waking up from anesthesia.  His pain was well controlled, happily.  One of the reasons we decided to use both general anesthesia and an epidural is because of the amount of pain Zack was under in June.  He had to stay in the PICU so long because of his pain.  We are glad we decided to try this combination as it worked really well yesterday.  Just look at this face:

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So, maybe he doesn’t look happy, but he is asleep and we will take that!  He continued to do pretty well through the night.  He woke up once an hour or so asking for pain medicine and was given Tylenol.  His surgeon was in this morning at 7:15 and I mentioned his pale complexion.  He wasn’t worried as Z wasn’t in much pain.

At 4:00 this morning, Zack’s epidural bag started beeping every few minutes.  The PICU team said it was because the bag was getting close to needing to be changed.  Around 7:30 the team changed out the epidural bag.  At 8:00 (ish), Zack started complaining of pain and was soon crying out in pain.  His nurse and I thought it was strange timing as they had just changed the epidural bag, so we gingerly turned him as he screamed and saw that his back was wet.  His nurse paged anesthesia.  The PICU doctor ordered morphine.  The morphine did nothing.  He was given another dose of morphine and started to calm down.  We were still waiting for anesthesia.  The PICU team decided to add some Toradol as well.  Zack began to calm down, but was still in pain.

When anesthesia arrived and looked at his epidural, they decided that it was not leaking.  Their assessment was that Zack’s original bolus from surgery yesterday was wearing off and that he needed a higher dose today.  They upped the setting on his epidural and said they would be back to check him tomorrow.  I’m still not convinced that all is well with that epidural, but I’m not a doctor and time will tell.

Zack started calming down.  He still did not want to be touched or wear clothes or to have anyone touch his bed.  He was still crabby.  He kept telling his nurses not to mess with him.  He told the doctors that he did not feel like speaking and to please leave him alone and to stop bothering him.  If you know Zack at all, you will know that this is not like our boy.  He also told everyone that he wanted to go back to 3 West – the pediatric ward.  He said he wanted to go back where he didn’t hurt.  So sad.

The PICU, the surgeon and the ward staff all decided his pain could be managed on the ward and we were on our way back.  Before we left the PICU though, we managed to convince Zack that he had to at least wear his gown.  Whew.

Once back on the ward, Zack’s pain was still pretty high.  He received another dose of Toradol.  The nurses explained that it is like ibuprofen on steroids.  He also receives Tylenol and can get morphine as needed in addition to his continuous epidural.  He was still grumpy, but after a little nap he began to feel a little better.  His respirations were still high, as was his heart rate, but when I left tonight he was playing Wii with his daddy.

It’s Jim’s night to hang with Zack.  I’m hoping they both sleep well and that the pain is better tomorrow.  Zachary’s ostomy seems to be working really well.  I’m still a bit concerned about his coloring.  The doctor ordered more blood work tonight as well in the morning to monitor electrolytes and other things.  We will see what those show tomorrow.

Zack has still not gotten out of bed.  Today was too crazy with pain.  Hopefully the nurses can help us figure out how to get him out of bed tomorrow.  Remember, he has an IV pole, an epidural, an IV in his ankle with an IV board attached to it as well as a catheter and bag.  I’m sure it can be done, but it was too much for us to figure out today given his pain.

Big picture though, things are looking pretty good.  The surgeons were able to find the reason for his obstructions and fix it.  His ostomy is working properly.  This is better news than we have had in over 5 weeks.  We are hopeful that Zack will improve each day and that we will be home soon.  I’m still a bit hesitant to believe that given our track record, but I’m still hopeful.

Thank you all for your prayers and well wishes!  I’ll try and update as I can.  Our new laptop is not connecting with the Walter Reed wireless for some reason, so I have to wait to post until I’m home.  As I’m sure you can imagine, I’m pretty tired.  I promise to try and update regularly, but hope you’ll understand if there is a delay from time to time.   Until then, give your kids lots of hugs and enjoy having them home and healthy!

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The Craziness Continues

I’m jumping on the blog to give a quick update about Zack.  As you are aware, he was discharged from the hospital on Thursday afternoon.  While walking to our car, Zack asked his daddy to carry him because his tummy was hurting.  Odd, yes, but we knew he was still a bit sick when he was discharged.  We knew the doctors felt he was well enough to leave the hospital, but that we needed to watch him at home and make sure we were hydrating him and letting him rest until Monday.

I had a PTSO meeting Thursday evening, but Jim and Z played trains quietly on the floor while I was gone.  Zack ate some Ramen noodles, had a bit of a fruit smoothie, but did not want Gatorade.  He loves Gatorade.  He complained a bit about his stomach, but nothing major.  However, after 6 p.m. there was very little output from his ileostomy.

Friday morning Zack woke crying in pain at 6 a.m.  I brought him into our room and tried to get him to settle down.  He kept saying his stomach hurt “in the middle” and that he wanted me to call his doctor and take him back to the hospital for an IV.  This was not a good sign.  I  asked Zack to let us look at his stomach and it was hard and a bit distended.  That freaked me out and then the vomiting started.  Jim and I agreed we needed to take him back, so we texted his doctor and off we went.

Zack was vomiting every 5-10 minutes and crying about his stomach as we drove and looked very unwell.  Jim and I were extremely concerned and frustrated and worried and scared.  His stomach looked very similar to his stomach after his first surgery this June.

Got to Walter Reed and went straight to the GI clinic.  Our new to us doctor came in the room, saw the barf bag asked a couple of questions and said he was admitting Zack.  I was relieved because there was no way we wanted to go home with a child that sick.  The clinic started an IV right there and then took us straight to radiology for x-rays and a fluoroscopy.  The doctor wanted to see not only if there was an obvious obstruction on x-ray, but also to see in real time how things were moving in Zack’s small intestine.

We learned that there was not a mechanical obstruction like a kink or twist to the intestine, but that Zack was suffering from a pseudo-obstruction of the small bowel.  Here is a link, let’s hope it works:

http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/

Zack is now on PPN (peripheral parenteral nutrition) which is similar to the TPN he was on this summer, except instead of being through a picc-line, the PPN is given through a vein.  He can not have anything by mouth for a few days.  Originally, we were going to try sips of clear liquids today, but his stomach was too distended and his output was non-existent after 11:30 this morning.  The resident on duty this evening along with our awesome nurses drained Zack’s ostomy manually with a long rubber tube and got 660 ml out.  That is a lot.  We are waiting to see what happens next.

Our main doctor has agreed to move Zack’s endoscopy to Tuesday.  Z has a cough, so we are unsure how anesthesia will feel about this.  If they are not comfortable with Z going under general anesthesia, the doctors will do partial endoscopies through both stoma’s and not go through the mouth or bottom so that he can be awake for the procedure.  This will allow some biopsies to be done now instead of waiting.

Zack’s small bowel is very dilated.  I think the loops measure 4.83 cm across and large for an adult is over 4.  Don’t quote me.  The intestines should have shrunk down by now and have not.  This is concerning.  The doctor told us that we are in uncharted territory with Zack now.  He said that he would encourage second opinions, but that he feels confident most people would do what they are already doing.

We have no idea how long Zack will be in the hospital.  We worry about school.  We worry about Jake.  We worry about what will and will not be found.  So many unknowns.

I’m hoping that you will all check the blog for updates and forgive us if we do not call you each individually.  We are focused on getting Zack better and hope this will allow us to communicate with you all efficiently.

I’ll leave you with one of my favorite Bible verses.  I keep repeating it to myself and I hope maybe it will help someone else:

Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go. –Joshua 1:9

Things Are Looking Up!

There he is…..my guy.  I wanted to say he was happy, but he is a bit sore after his procedure.  Look at his face.  He isn’t unhappy, I guess he is just “uncomfortable”.  If you saw what they did to his intestines it would make you uncomfortable as well.

The GI Team actually did the roto-rooter deal.  They took a spaghetti scope and inserted it into Zack’s ostomy.  The camera allowed them to inspect his small intestines.  They advanced the camera slowly and about 18 cm into the small intestines they found a spot where a turn in the intestines was constricted. The explanation I understood was that the intestines are so dilated that they are pressing on this turn and sort of flattening the turn and thus not allowing the fluid to flow freely past.  Got it?  Whew.

The surgeon then took over and “invented” a stent from an NG tube that had holes in it.  They then inserted the NG tube in with the scope past the blockage up to about 35 cm.  Then they turned on the suction to make sure it worked and it did.  The hope is that gravity will pull the fluid out of his intestines into that tube and out into a bag outside of his ostomy bag, under his bed.  Wow.  That sounds confusing.  Let me add a few pictures to help me describe this crazy deal.  If you are squeamish, skip right on over these few photos:

Z’s ostomy bag with tube coming out of the lower portion:

By the way, this is an adult collection bag to accomodate the amount of tubing coming from the site.

Next photo is the bag coming from his body to the edge of the bed:

Finally, the collection bag under his bed:

Not all of the fluid will be collected by this tube.  It is hoped that the remaining fluid will follow the tube and come out into the ostomy collection bag attached to his body.  We hope to keep the tube in for 24-48 hours.  The doctors think Z’s body will probably push the tube out over time.  We also hope the swelling of the intestines will diminish allowing the constricted turn to open up and drain on its own.

Now the if’s…

1.  If the drain stays in and drains properly, we will disconnect it in 24-48 hours and see if his body can work on its own.  If so, yay…we can go home early next week.

2.  If the drain stays in and drains properly and is disconnected and does NOT work properly, we will go back to draining his ostomy manually.  Jim and I will be taught how to do this until his body can do it on its own.  Joy.  BUT we could still go home :).

3.  If the drain does not drain properly, Jim and I will be taught to drain it and can go home early next week if everything else remains the same.  If his body does not begin to work, we will continue draining the ostomy until his body is healed enough to perform another surgery in the near future.

As you can see, most of these options include us coming home sometime next week.  I am afraid to type this…..I hope it is really true…..

Another exciting thing for Z is that his NG tube was removed.  Most of the fluid was making its way down the intestines away from the NG tube, we weren’t getting much waste from that.  Zack has been so brave and strong through all of this and rarely cries.  Having his NG tube messed with sets him over the edge.  Having it out was a big deal for him and that makes me happy.  If all goes well tonight, Zack might get to have a drink tomorrow.  He’s already planned it out and has decided his first drink will be apple juice.  Sounds wonderful.

Zack would like to post a picture of his crayons.  So here you are:

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Overall, a very good day indeed.  We needed that!

Dawn

Holding Steady

Yep, that’s right.  Holding steady.  It’s better than sliding back.  Not quite moving ahead, but  we’ll take it.  My days are a bit blurred together, so forgive me if I have it out of sequence.  Wait, you won’t know!  Ha!  What a relief.  I’ll do my best to give you Zack’s update and as a bonus, I’ll throw in a few cute pictures.

Come on…how cute is he?

When last I typed, things were pretty rough again after a day and a half fake-out of happiness.  The surgery team thought a lot about what their next step should be and ultimately decided to do a CT scan with contrast to check for an abscess.  Z had been looking unwell, lacking energy, sweating and having a good amount of pain.

The results of the scan were both good and frustrating.  We know Zack does not have an abscess.  That is super good news.  We know there isn’t something visible blocking his intestines which would account for their lack of motility.  The frustrating part is that his intestines are not moving.  As I understand it, we still don’t know what is causing the problem.  His entire intestinal tract is now dilated except for a small bit near the stoma opening.  Because they are so distended, radiology will say he has an obstruction, but is it a true obstruction?  That is a question we cannot answer yet.  Since he had a CT with contrast, Zack will have x-rays over the next several days to see if the fluid moves at all.  If it moves, it could show a place where it stops and thus indicate an obstruction we can’t see right now because of the swelling.  If it doesn’t move it could be a motility issue.  We really can’t guess or plan until we have more information.  I’m a planner.  I do not like this.  Jim is a calm, mellow fellow and he is OK with not knowing what comes next.  I also think this is because we DID rule out some serious health concerns….again….good.

I really appreciate the surgery team and how honest they are with us.  Even though I feel frustrated with not knowing, at least I know they are on top of his care.  In addition, today they found out that Zack’s albumin level is low.  Again, I’m not a doctor or a nurse or a dietician, so I copied this from WiseGEEK.org:

Within the human body, albumin is an important component of life. It transports essential fatty acids from adipose tissue, otherwise known as fat, to muscle tissue. The protein also contributes to the regulation of osmosis, helping to transport hormones, drugs, and other substances through the blood. A deficiency can lead to medical issues, and medical professionals may request a blood albumin test when investigating a patient’s medical condition.

Zachary’s surgeon is working with the dietician to get this level figured out.  They also discovered his iron level is pretty low, but not  low enough to require a transfusion.  Um, yes, let’s hope we can skip that please!

So, here we are…holding steady.  Zack can’t leave the hospital because without machines sucking gunk out of his stomach, fluid being drained from his stoma and nutrition through a PICC Line, he couldn’t survive.  BUT he isn’t “sick”.  We just have to wait for his body to decide to kick in or for something to show up on x-ray that would indicate another issue.  He had a bit more energy today.  He has colored pictures for his nurses and doctors and is currently playing with cars.  He is pale and has sunken eyes and his tummy still hurts, but we can deal with those things.

Now the question is, how will tonight go?  Don’t worry though….my family and friends have been increasing my chocolate stash.  Now if I could only bank sleep I’d be all set.

Dawn

Update

I wrote most of this last night before Z went to sleep.  He had a pretty tough night.  Lots of pain.  The first time it was managed by flushing his NG tube.  Everything in Z’s stomach has to be suctioned out or it will continue to build up since it does not have a place to go.  It is collected in a container and measured every two hours.  Whatever comes out is then replaced with IV fluids.  This is what the container looks like:

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Zack also has his heart rate and breathing monitored continually with pulse oxygen levels every four hours.  The pulse ox thing is just because he is not a fan of the monitor and they can tell he is doing alright.  The machine:

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And finally, Z has his IV pole.  There are typically 3-4 bags of things hanging there.  This picture shows 4.  One is the fluid replacement which is mixed in the pharmacy according to what the morning labs show he needs.  The big brown one is the TPN mixture minus the lipids.  I’ve been told the lipids and this bag not mix well, so they are separated out.  The white milky stuff is his lipid bag.  The 4th thing is medicine.  They mix this one up.  Sometimes it is a pain medicine and sometimes he gets Protonix, which is like Prevacid.

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Ooops.  Sorry, went on a rabbit trail, but thought you might like to see all the “stuff” Zack has monitoring him.

Shortly after the NG tube was fixed, Z was in a lot of pain.  He was moaning and squirming and crying.  His nurses were surprised to see him in so much pain.  The Surgeon of the Day was called and drained another 250 ml from his stoma.  He was drenched in sweat and we had to change his bedding and pajamas, etc.  I think we finally got him settled and sleeping by 2:30 and he slept soundly the rest of the night.

The surgeon came in a little bit ago and gave us our new plan.  If nothing changes for Zack today, he will go back to the Pediatric Sedation Unit tomorrow for another procedure.  This time his doctor will insert a scope into the stoma so that he can examine the intestines and see where the fluid is building up.  He thinks it is possible that because his small bowels are so distended, one of the loops may have collapsed in onto itself.  He does not anticipate Zack needing any other surgery.  I hope he is right.

We are extremely ready to check out of this fancy hotel.  It’s been nice and all, but we are d.o.n.e.  Hopefully we will be able to give some good news tomorrow.  I wish you all a great day and remember to hug your kids!