Zack’s New Plan

Now that we are back home and getting used to being in a routine again, I finally have time to update this site.  Zack was very excited to come home and giggled when he climbed into his bed.  He said he missed his pillows and his cozy sheets.  I felt the same exact way.  To make our first night home even better, Zack slept through the night for the first time in months.  I am pretty sure I heard rejoicing in the heavens…or that just might have been me.

While Zack was in the hospital, the doctors told us that it was time to start looking at some more obscure things.  I guess doctors have a saying that goes something like, “Don’t go looking for zebras.”  Meaning, don’t go looking for a complicated illness when a more common one is most likely.  The attending pediatrician on service this past week is a GI as well.  We have known him since 2013 and have great respect for him.  During rounds he told us that it is time to start treating Zack like an albino zebra. He said that Zack has been “medically brittle” for a long time and on the brink of disaster for months.  It is time to start digging deeper to see if we can come up with some reasons for Zack’s super high output and sodium losses.

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Big brother helping Zack be brave for his PICC dressing change.

Walter Reed and Cincinnati shared testing information so that we do not have to repeat a bunch of tests.  The doctors here came up with some new things they would like to investigate.  One thing they are considering is the possibility that Zack’s intestines are not processing sugars correctly.  This is all new to me, so it is quite possible that I am getting things wrong here.  They want to make sure his pancreas is functioning well and a few other things.  They said many things.  My brain was tired.  I cannot remember it all.  I need a secretary.

One of their plans was to have Zack undergo another endoscopy while he was in the hospital.  Sadly, he had a pretty good cough and anesthesia is never a good idea when you have a cough.  We will schedule that in the next few weeks.  During the scope they will take tissue samples from a variety of places.  I know they will be looking closely at the villi to see how certain enzymes are being processed.  They want to magnify tissue to many times greater than a normal biopsy to see the arrangement of cells.  They also talked about getting something from his bile ducts.  Again, I need a secretary.  If I come back in a few weeks and write something completely different, you can assume I had this wrong…but I am fairly confident at least some of it is correct.

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Zack’s high output also causes him to lose a lot of sodium.  I always knew low sodium (hyponatremia) could be an issue, but I did not realize just how dangerous it can be.  Because Z’s levels have been low for so long, we spent a lot of time in the hospital getting his levels back to normal.  In an effort to keep them normal and prevent such big fluid losses, his doctors have suggested putting him on CeraLyte 70 as his primary form of liquid during the day.  CeraLyte is a oral hydration therapy and comes in several different strengths.  In addition to using CeraLyte 70 for daily hydration, they sent us home with “rescue doses” of CeraLyte 90 to give through his g-tube when his output is really high until we can get him in for labs.  From their literature:  CeraLyte 90 is for severe diarrhea and dehydration–where fluid losses are high–such as in cholera or with short bowel or ileostomy.  Who knew this was a thing?  Why didn’t anyone know about it before?  So many questions…

All of that sounded great when Zack was in the hospital.  And then we came home and actually got the product.  Our home health company could only send the natural flavor at first and let me tell you…it is not something you can sell to a kid as something fun to drink.  While we can give it through his g-tube, Zack likes to drink and if he cannot have anything else all day it isn’t going to work.  Actually, he can have 6 ounces of another liquid, but have you seen ever measured 6 ounces?  I’m pretty sure we will have a mutiny on our hands.  We will see his GI on Monday and talk about the plan and see if we can turn it into an executable one.

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Zack and Aslan.  Quite possibly the most awesome dog in the world.  By the way…Zack is 49″ tall, so that is one big puppy!

The good news is that Zack’s sodium levels were all in the normal range when we left the hospital on Tuesday.  That was the first time that has happened in months.  He feels great and is back in school.  Speaking of school, Zack received his new laptop today and, even better, they trained me on how to use it.  I am pretty sure I needed the training more than Zack.  He is so excited to have his own computer.  He has already mastered the Kurzweil reading program and is enjoying The Lion, The Witch and The Wardrobe.

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Trying out his new laptop.

As you can see, things are getting back to normal around here.  We are so grateful for all of the people who helped us get through the past two weeks.  To all of our awesome neighbors, thank you for helping Jim keep Zack stable and for transporting him to the hospital.  To all of our awesome hospital friends, thank you for taking such good care of Zack and of me.  To our friends and family, thank you for checking on us, visiting us and bringing us food.  You all rock!

Hug your babies!

~ Dawn

The Family Plan

If the forecast calls for a blizzard, you might as well plan on some Penrod drama.  During the height of the Blizzard of ’97 in Colorado Springs, our son, Jake, decided it would be the perfect time to enter the world.  The fact that every blasted thing on base was closed, the streets were impassable and the hospital said not to leave our house made no difference to him.  Happily, everything worked out and Jake was delivered safely.

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Ten days ago as the forecast was predicting the Blizzard of ’16, I thought that I had food poisoning.  After 24 hours of that fun, Jim decided I needed to go to the hospital.  I figured it was either that or death, so I took my chances.  Turns out I had a partial small bowel obstruction.  I assure you, the irony was not lost on me.  The hospital admitted me, Jim made sure I was settled in my room and that I was, in fact, not going to die or need surgery right that minute and hurried home to beat the storm.  Zack requires a lot of maintenance on normal days, we did not want Jake to try and take care of him during a blizzard.

Saturday as I was in my hospital bed realizing that Zack is much stronger and way braver than I, my phone rang.  Jim was calling to ask me the phone number of our friend who happens to be a physician.  Um…. Jim does not worry.  Jim does not freak out.  Jim NEVER calls the doctor.

Turns out Zack was pretty darn sick.  He had a little stomach bug overnight and woke up lethargic and looking pretty awful.  After watching him for a few hours and watching the snow falling faster by the minute, Jim started to realize that Zack needed help.

Our friend, Sarah, soon arrived and took Zack’s vitals and they were not great.  I guess his heart rate was in the 140’s and his systolic pressure was 50.  She called the paramedics to see if it would be possible to get some IV fluids and some Zofran for Zack (thank goodness Z has a PICC line).  Normally, the paramedics would not do that without transporting Z to the hospital, but the blizzard was pretty bad.

When they arrived, the ambulance got stuck in our neighborhood.  We live in a great subdivision and word got out that we needed help and soon many neighbors were digging the ambulance out and sending it on its way.

Sarah stayed with Jim and Zack until she was sure everything was going better.  Jim put Zack to bed and all was well until Zack climbed into bed with him around four in the morning.  Jim said that those were the only steps Zack took during this whole time.  In the morning, it was obvious Zack was not doing better.  Sarah came back down and she and Jim decided that Zack needed to get to the hospital.

Once again, our neighbors came to the rescue.  One of our neighbors has a snow-worthy truck and he volunteered to drive Jim and Zack to the hospital.  That was a big deal because our hospital is over an hour away in good conditions.

Back to my story.  I was trying hard not to get too worried, but Jim had sent me a picture of Zack and I knew he was bad.  The nurses on my floor allowed me to go down to the pediatric ward to see the nurses there.  Because Zack has been in the hospital a lot these last few years, the nurses there are our “hospital family.”  They were awesome and talked to me and helped calm my fears.

Interestingly, one of the surgeons on my team was Zack’s surgeon’s resident for his first two surgeries in 2013.  I told him what was going on and he made sure that the Emergency Department knew Zack was on his way.  He arranged for me to have a hospital pass to leave the floor and meet Zack and Jim when they arrived. He also arranged it so that I could stay with Z in the PICU.  My nurses even came down to the PICU to take my vitals and bloodwork so that I did not have to go back and forth.  I cannot even begin to tell you how amazing that was.

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Getting an X-ray in the Emergency Department.

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Two of Z’s amazing PICU nurses.

Zack was admitted with a very low sodium level and dehydration.  We would later learn that his sodium level was probably not quite as bad as we originally thought.  We could tell that from some later tests, but it was still not great.  While he was in the PICU, he was able to see President Obama land on Marine One at the hospital and thought that was pretty cool. He was soon transferred to the regular pediatric floor and has been there ever since.

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Puppy therapy makes everything better!

I’ll save that story for another day.  I will tell you that he is still in the hospital and doing well.  The doctors are working hard to get his sodium levels and output under control and investigating a few other things.  We anticipate that he will be coming home in the next few days.  I am not able to update this blog there because my computer will not connect to their wifi and the wifi on the pediatric floor stinks.  I promise to update more once we are home again.  Until then…

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Hug your babies!

~ Dawn

Motility Testing

Monday we checked into the hospital for a few days to check Zack’s colonic motility and to see if the doctors could find any abnormal things inside his colon.  We have done the motility test twice before but received different results each time.  Now that Zack’s ileostomy is close to prolapsing again, it is obvious that an ileostomy is not the best option for him. It is time to come up with a better solution.  We need to know if there is any chance his colon would work if reconnected.

Zack was really happy on Monday.  It is rare for him to be admitted while feeling well. He loves visiting with the nurses and staff on the pediatric ward at our hospital and he was is high spirits giving hugs and talking to all of his “friends”.

He lost that happy feeling late Monday night when several attempts to start his IV failed.  When he woke up on Tuesday, the reality of anesthesia clouded his happy countenance. Things went downhill behavior wise from there.  Zack’s incentive (bribe) for good behavior was the Lego City Dirt Bike Transporter.  He was looking forward to building it after his procedure and had grand plans for it.  Sadly, Angry Badger made an appearance.  His Lego set is now in Daddy’s closet until the next procedure when he will have the chance to earn it once again.  Bad behavior just cannot be rewarded no matter how sad that little face looks.  Stand strong parents!

IMG_4647Zack’s warrior headband did little to cheer our cherub.

Jim and I are sad that Zack is so out of control anticipating anesthesia.  We worked a little bit with our Child Life specialist today with some medical puppets and dolls.  Zack was able to place an IV in the puppet’s arm and talk a little about how much he does not like them.  One of our favorite nurses of all time gave us some suggestions from things he had been studying regarding children who have had many medical procedures and become fearful.  We are hopeful we will find something that helps calm his fears because they are getting worse.

Zack headed off for his colonoscopy and colonic catheter placement around noon. Zack’s doctor said the colonoscopy was good with nothing abnormal found.  The catheter or tube contained a lot of sensors that measured the pressure or contractions in his colon at rest and with meals and medical stimulation.  It was clipped (somehow) to the beginning of his large intestine and then brought out of his body through his bottom and taped to his leg.  The procedure did not take long and he was back in the PACU after about an hour and a half.  It took a long time for him to wake up from the anesthesia, but there were no complications this time and everything went according to plan.  I like that.  Zack was not able to eat or drink for the rest of the day and had to stay in bed.  That was not a problem as he did not really want to move.

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Zack, Jim and one of our nurses with matching tattoos.  Zack also put one on his belly as a surprise for his doctor to find.

This morning, the colonic manometry started when Zack woke up.  Zack’s doctor said this gave them a baseline measurement.  After about thirty minutes, he was able to eat pancakes and drink!  He downed an entire 32 ounce G2 Gatorade in a matter of minutes and was a happy, happy child.  Once he finished eating, the machine continued recording until his doctor returned to give him a medication through the tube to stimulate his intestinal nerves.  This medication worked!  We were able to see propagating waves on the monitor.  Propagating waves are a good thing.  In January, there were none, zero, nada.

Now the never ending questions remain.  First, why does he have decent motility when he has an ileostomy and his colon is at rest?  Did his septic symptoms skew the test last time?  Does his colon stop working properly when it contains stool?  Was the colon so dilated that the sensors couldn’t sense anything?  Second, what are the least invasive ways to get answers?  One idea is to give Zack a cecostomy.  This would allow us to flush Zack’s colon from above, but can only work if we can figure out why nothing comes out of his bottom. Can we try re-feeding his colon (it’s a real thing…adding ostomy output into cecostomy to see how colon reacts to stool) before reconnecting him again?  You get the idea.  Lots of questions.  Unfortunately, we may not have much time to figure this out.

Today, however, we are happy to be home.  Zack was discharged at 12:30 which gave us plenty of time to play.  It was a beautiful, sunny day.  Zack was thrilled to be outside even if all of the kids in the neighborhood were gone.

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Daddy getting the IV tape off.

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Happy to be home!

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Frisbee with Dad.

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Almost caught it!

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Even had time for a bike ride!

We are looking forward to enjoying the last four days of summer vacation.  We are hoping to have a little pool time, a barbecue with friends and lots of play time before then.  We are pretty excited that we have good news to report.  Hoping to continue that trend for a while!

Tonight we are excited to sleep in our own beds, no machines, no noises, no lights.  It is very exciting!

~ Dawn

The Return of the Stoma

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Hug your babies!

~ Dawn

 

Zack and “The Wound”

Two weeks out from surgery and Zack feels “awesome”.  Those of you who know him recognize this as his usual response to the question, “How are you feeling, Zack?”  He very rarely deviates from this response and it always makes me smile.  I am blessed to have such a happy boy.

I do believe that Zack actually does feel awesome at the moment.  In fact, he seems to have been feeling noticeably better since his last surgery.  My theory is that he felt so bad before surgery because his colon was so large and not working.  Now that his colon is resting and he has a functioning, non-prolapsing stoma he feels like a new boy.

We are dealing with a few issues.  The biggest one at the moment is that part of his incision has separated.  I have been told this happens more frequently that people think and that these wounds require attention as they can become quite serious rather quickly.  We have met with Zack’s surgeon here and the wound ostomy nurses and come up with a plan for handling “The Wound”.

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Zack being brave getting his IV in the ER.  Doesn’t he look thrilled?

The hope is that it will heal from the inside out.  The problem is where it is located.  His incision is at the top of his stoma in an area that is normally covered by his wafer — the piece of the bag that sticks to his skin.  Pulling off sticky bandages from an open wound is not very conducive to healing.  To try to avoid that, we were cutting out a bit of the sticky part (wafer) to keep the adhesive off of it.  That allowed stool into the wound.  You can see how this was a bad combination.

Happily, people smarter than me came up with a much better plan.  I will tell you what we are doing, but it might bore you.  You can skip this paragraph if you would like.   First, we pour stoma powder into the wound and dab it with Cavilon skin barrier wipes to help seal the area.  Second,  we apply Aquacel Ag which is an antimicrobial dressing that has silver in it to help aid in healing the wound.  After that, we place a large piece of Duoderm over the whole area with a hole cut out for Zack’s stoma.  Over top of the Duoderm we use Eakin rings which are soft, moldable skin protectors.  They go around the base of his stoma adding another layer of leak proof protection for the wound.  Finally, we put his wafer over all of that and then attach his bag.

We were hoping that all of that would last for 48 hours, but sadly, we had quite the leak at 4 a.m.  I will spare you all of the details, but there was carpet steaming involved along with a shower and replacing all of wound care items mentioned above.  Tomorrow we will see our ostomy nurse and she will evaluate how well Zack is healing and adjust our plan accordingly.  We will get the weekend off and return again on Monday morning to do the same.  Hopefully by Monday we will be well on the way to healing that crazy wound.

Zack’s surgeon also talked to me about the dangers of an incision that has been weakened by multiple surgeries and/or wounds.  There is the danger of a parastomal hernia.  There is risk of obstruction.  The wound can get bigger and deeper.  Basically, fun things.  I used to just brush off risks of complications and not pay much attention to them, but I am now a seasoned complication mom and made sure to pay attention to what he was saying.  Maybe by paying attention Zack will avoid them this time. It is silly, I know, but if nurses and doctors can have their superstitions, I can have mine.  If only I believed in superstitions….which I do not.

Yesterday Zack and I also met with his GI doctor to talk about surgery and steroids and lots of other things.  We discussed the fact that Zack’s anastomosis was not revised as we initially thought it would be and how that makes it hard to determine whether or not the steroids were effective in helping calm his eosinophilic ganglionitis.  Our surgeon in Cincinnati was originally going to revise the anastomosis, but during surgery she could not find anything physically wrong with it and decided to leave it alone.  Her reasoning was that if we need to do a colectomy later, she wanted to leave as much of his remaining rectum as possible.  It made perfect sense at the time and still does.

The problem is that Z’s barium enema clearly shows an issue there.  Stool cannot pass from an area directly above that point in his colon.  Liquid can flow freely below that area indicating that there really is some issue at that spot.  Cincinnati believes the stool cannot pass because his colon is so large it just stopped working.  Because there is no motility, nothing can be pushed out.  That makes sense, kind of…but our GI’s point makes a lot of sense as well.  It is likely that Zack needs his colon removed, but what “if” this is the problem?

I felt so many conflicting emotions about this yesterday.  I respect Zack’s doctors very much.  I actually even really like them as people.  Are doctors really actual people? I know they all have the very best intentions and are doing what they feel is the very best thing for Zack.  I know his case is unique and that nobody really knows the issue.  As a parent, trying to sort it all out and make informed decisions for my child is grueling.  The “what if’s” feel like a heavy weight on my chest.  It might just be a mom thing.  I do not know.  Jim is great at making a decision and not looking back and questioning it.  I am a bit different.

Ultimately, Jim and I have to decide what we think is best for Zack.  We do not want to subject him to unnecessary surgery…he has had more than enough already.  We also do not want to miss something that might give his colon a chance to work.  If you have been following our story at all this might remind you a bit of the movie Groundhog Day starring Bill Murray. Believe me, it often feels that way to me.

Hopefully Zack’s new ileostomy will last longer than our record three months without significant issues.  As long as we can keep it working well, we can coast along for quite a while before making any other decisions.  My brain would really enjoy the rest!

Next week is an exciting week for Zack.  He is participating in the Maryland Special Olympics for his school.  I believe he is entered in the tennis ball throw and the 50 meter and 100 meter walk.  He was supposed to be in the run, but that darn wound is keeping him from that.  Zack is really looking forward to participating and to having his family there to cheer for him.  I am sure I will have lots of fun pictures!

Hug your babies!

~ Dawn

Big Decisions

When my babies were born, I remember looking at their beautiful eyes and kissing their precious noses and holding their tiny little hands and feet.  I remember being relieved that they had all of their parts and everything seemed to be working as it should.  Everything on the outside looked great,  It never once occurred to me to ask, “So, doctor, how does his colon look to you?”

Sadly, many children are born with diseases such as Hirschprung’s Disease and need surgery soon after birth so that their colons can function properly.  Many children live without parts of their colon and some even live without their colon and a lot of their small intestine.  I am beyond thankful that smart people have figured out how to help kids live without parts of their intestines and have happy and full lives.

You may be wondering why on earth I am writing about such things today.  Zack was doing so well in my last post.  There were no hospitalizations in February and our guy seemed to be getting better.  I guess that will teach you to trust a thing I say!

About 10 days ago, Zack started having trouble tolerating his irrigations.  In fact, he started screaming in pain and begging us to take the tube out.  He was adamant that we were breaking his metal (staples) and that we were making him bleed.  Irrigations, while not super comfortable, should not hurt.  This was a new development and after a few days of seeing how much pain Zack was in, we began to worry.  He was still acting fine during the day, but irrigations were causing him to lose his mind and he began waking in pain again at night.

A quick email to the doctor and an x-ray later told us that Zack’s intestines were in fact not doing well.  His x-ray showed significant colonic distention.  His surgeon and GI spoke, we spoke to both of them and options were given. We are not really fond of any of the options and have until tomorrow to ponder them and make some big decisions about our boy.

It is clear that Zack will be having surgery number SEVEN in Cincinnati very soon.  Seven is a lucky number, right?  Lots of children have had more surgeries than that and are just fine.  Still, this is my child and the thought of more surgery hurts my stomach.  We have not told Zack yet, but I am pretty sure he will be far from pleased.

Our options were explained to us yesterday.  Zack’s surgeon said that after being diverted (ileostomy), Zack’s colon appeared normal on all testing.  However, as soon as he was reconnected in September, he started having issues again.  He had abdominal distention and pain and had an incredibly hard time recovering from that surgery.  Since then he has needed rectal irrigation to help remove his stool.  His stool has never formed and continues to be watery.  His x-ray’s are not favorable.  His manomety testing is abnormal now. He has had abnormal pathology twice.  In short, we need to do something to give his body some relief.

Zack’s surgeon also explained that, though it is rare, some children/people have colons that just cannot tolerate stool.  Ironic, huh? Of course, nobody actually knows what on earth is wrong with our child and that is frustrating.

The first option is the least invasive.  Give Zack another ileostomy, rest his colon again and remove the staples from his body and replace with sutures.  Zack’s surgeon said that would give him relief, but she really does not think his colon is ever going to work properly.  However, she recognizes that we might not be comfortable removing his colon yet and this would allow him to keep his colon for now.  I still have nightmares about Zack’s prolapsing ileostomy and need reassurance that this would not happen again and answers as to why it happened in the first place.

Second, we could do the procedure above and at a later date consider a sacral nerve implant.  Currently this is only used in adults, but it is something we could consider for Zack at some point in the future.  Of course, there is no guarantee this would work and it is still pretty experimental.

Third, we could remove Zack’s colon completely and give him a j-pouch.  This link will take you to a result page on Cincinnat Children’s Hospital Medical Center’s search site.  The first article is a PDF called IBD Education Day 2014.  It is lengthy and talks about ulcerative colitis, but it does describe the type of surgery we are considering and how it works.  I’m guessing this is a page most likely to be read by my family.  You can ask me questions about it, but chances are I will not know the answers yet.

We just learned about these options yesterday.  Today, Jim sent our doctors a very lengthy list of our questions.  We will be talking to the surgeon again tomorrow to go over the answers and to give her our decision.  On Tuesday we will meet with Z’s GI here to do an irrigation and see if we can figure out what is causing his pain.

Zack’s surgeon is actively searching for OR time and feels like she will be able to get it very soon.  Once we have a date things will move pretty quick.  No pressure or anything.  This is definitely one of those days where being an adult stinks.  I want to stomp my feet and say, “Don’t make me decide!”  The decision seems huge and depending on which option, pretty final.  Once you take an organ out, there is no going back.  I feel overwhelmed at the decision before us and look forward to putting it behind us.

I leave you with a picture of my silly boys.  This picture was taken a few days ago at Jake’s school production of Alice In Wonderland.  Jake was an eaglet and also co-wrote the music.  Don’t they look great!

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Hug your babies!

~ Dawn

 

 

Some Results

I know you will be surprised to learn that patience is not my thing.  I mean I CAN be patient, it just does not come naturally to me, especially when I am waiting for medical results.  I would really like them to be immediate and favorable.  I am frequently disappointed.  Happily, we only had to wait twelve days for the results of Zack’s latest testing.

Jim and I met with Zack’s doctor without Zack last week.  It was nice to be able to fully concentrate on what we were being told. We learned that Zack’s motility was abnormal.  I mean…we kinda already knew that after watching the manometry machine for two days.  The bigger question is why did Zack have normal motility in July before being reattached but not now that he is reconnected?  Z’s doctor gave us several theories.  He was a little sick after the colonoscopy.  Sometimes that can cause the intestines to slow down.  His colon is also pretty dilated, so perhaps the peristaltic waves are ineffective and hard for the machine to detect.  He had no movement the first and second day after eating, but after Dulcolax was administered the second day, some weak propagating waves were seen.  They were not as strong as they should have been, but his doctor seemed encouraged to see them there.  We still have a lot of questions……

In addition to the motility issue, Zack’s barium enema showed an obstruction just above his anastomosis (reattachment site).  We are not sure what is causing the obstruction, but it does explain why Zack is having so much trouble pooping at the moment.

Zack’s biopsies were non-specific.  I take that to mean that they did not show much.  His eosinophil level was a bit elevated. His stool sample showed a normal calprotectin level.  An elevated calprotectin level indicates inflammation of the GI tract and is found in diseases like Crohn’s and Ulcerative Colitis.  I do not think we ever thought those diseases were under consideration for Zack, but it is always good to rule things out.

Because Zack has had a number of strange things happen, Z’s doctor has said that we need to consider that we are missing something.  The way his intestines prolapsed last year with the ileostomy was not normal.  When he had surgery to tack his intestines to his abdominal wall to stop the prolapses, he tore through 10 internal sutures…not normal.  His body reacted like a Hirschprung’s body after his reattachment.  He does not have Hirschprung’s.  Not normal.  The eosinophilic ganglionitis showing up in full thickness biopsies taken in two different places in his intestines at two different hospitals.  Not normal.  His rectum did not look or feel normal to his surgeon.  You get the idea.

Z’s doctor and surgeon have spoken and come up with a new plan.  Zack has started on a course of prednisone to see if his colon gets back to normal size.  If he really does have eosinophilic ganglionitis, the steroids should make a difference.  We are hoping that the steroids will help make the obstruction better.  I am still not really sure about some of this, so do not be surprised if I change my story.

Zack’s surgeon is calling us this week to talk to us as well.  If the prednisone does not help, Zack may have to have is anastomosis revised.  In English, this means that he would have another surgery at the site of his reattachment between his rectum and descending colon to fix the obstruction.  Obviously, we are rooting for the steroids!

While I like to think Jim and I do a pretty good job of holding it together in the midst of our life stressors, my sisters thought it might be nice for Jim and me to have some alone time.  Our son, Jake, is away on a missions trip to Guatemala for a week and the “Aunts” said they were coming to get Zack.  We gave them a crash course on Z’s feeding tube, mixing formula, how to rub Z’s tummy when it hurts and how to give him his meds.  They blessed us with 48 hours of much-needed time alone.  I cannot remember the last time Jim and I were alone in the house together.  Really.  We were able to sleep though the night, watch movies, clean the basement (it HAD to be done) and remember that we actually do like each other.  It was a nice retreat from the craziness of our life.

Zack came home today.  He said he wanted to live with his Aunts forever because they spoil him.  He asked why Jim and I do not spoil him.. I think we will need to spend some time reprogramming our guy.   I’m glad he has such great relatives.

While he was being “spoiled” he had his first dose of steroids.  So far so good.  No crazy side effects to report.  One side effect that we would be happy to see is an increase in appetite.  We are hopeful that the steroids will help Zack’s body and that we will see an improvement in his pain, motility and that they help make his pooping more normal.  Always hopeful…

I leave you with some pictures of Zack.  I let him choose the photos for you.  Whenever Z has to go into the hospital for procedures, he gets to pick a Lego.  He then gets to hold it until he makes it through anesthesia without losing his mind.  If he accomplishes that, when he wakes up he gets to build the Lego set….or his dad does…but he gets to take credit for it.

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A Star Wars fighter.

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A birthday present, not a hospital present.  We are NOT that nice, remember?

starwarsThe inside of his Imperial Star Destroyer.  He loves it.

Zack is always listening to our conversations so we were not surprised that he heard that he might have to have his anastomosis revised.  He did not freak out, he just calmly looked at us and announced that he would like the Millennium Falcon if he needs surgery again.  He’s on to us.  We are in trouble…time to start praying those steroids are our miracle drug!  Or, I suppose, we could just say no and call the Aunts.  I am liking that idea….

~ Dawn ..

Zack’s Tune-Up

I apologize for not posting lately.  I needed a little break.  We have had a lot going on around here and I was tired.  OK, enough of that sob story….

Zack had been doing fairly well since our last visit to Cincinnati.  However, we were still dealing with bouts of pain and problems stooling.  You know, the same old thing.

After wearing Zack’s doctor down with our incessant texting about Z’s pain and lack of stool, he decided to admit Z and figure out what on earth was going on with our little man.  I truly believe that besides Jim and me, nobody else wants Zack better more than his doctor.

We took Zack to Walter Reed on Tuesday and started his stay with an x-ray as it had been several days since he had gone to the bathroom.  The x-ray showed that the problem seemed to be pretty low in his intestinal tract.  On Wednesday, Zack went back for an endoscopy, colonoscopy and biopsies.  He was not overly thrilled, but managed to hold it together and was brave.

After the procedure, Z’s doctor said that everything went well.  He also told us that Zack’s stool sample showed white blood cells which usually indicate some type of inflammation.  We do not have all of the results from that back, but it was a new finding.  While Zack was trying to wake up in the recovery room, he had some trouble with his oxygen level coming up.  His heart rate and breathing rate were high as well, so it took us awhile to get back to his room.

Once back in Zack’s room, his issues continued.  He was complaining that he could not wake up, so we just let him sleep.  Late in the evening, we started noticing he was feeling pretty warm.  Soon his temperature was up to 102.7 and his vitals continued to be a bit off.  Happily, the residents that night were on it.  They got Zack started on antibiotics and came in and checked on him a lot.  At about two in the morning Zack’s blood pressure went down to 88/38 and nobody was thrilled.  Zack’s nurse, Ms. Kristi, was amazing and made sure Zack had great care.  Zack’s fever finally began to subside and I spent the rest of the night listening to Zack and making sure he was OK.  I was pretty happy we were in the hospital.

The next day, we were told that there were three different reasons Zack could be having issues.  He could have an infection.  I guess the intestines are pretty vascular and sometimes bacteria can cross into the capillaries during a colonoscopy causing an infection.  Another idea was that the colonoscopy caused a micro-tear of the intestines.  I understand that the body can encapsulate this somehow while it heals.  I have no idea…I’m just making stuff up.  Actually, that is what we were told. The last idea was that Z was super dehydrated.  This seemed less likely when his heart rate and breathing rate remained elevated even after three boluses of fluid. I guess it doesn’t really matter because he is doing much better and will continue on antibiotics for the rest of the week.

On Thursday, Zack was hooked up to the manometry machine to see how well his colon works now that it is reattached.  Manometry is the measurement of pressure or contractions in the large intestines.  There are several times when there should be good contractions – upon waking, after a meal and when some medicine is introduced.  On Thursday, not much happened.  Z’s doctor said that if he was fighting an infection, it could skew the results as many times intestines will slow during infection.  Since we had to stay longer because of Zack’s antibiotics, Z’s doctor said he wanted to try again on Friday.

A side note:  Remember how I said Zack has an amazing doctor?  During the manometry testing, Zack was required to eat a meal.  Z’s doctor asked him what he wanted to eat and then came in that day with all the fixings for turkey sandwiches and blueberries.  He made Zack a sandwich and ate lunch with him.  That is just one example of what a great doctor he is.  Zack is still talking about it.  He tells us, “Dr. O really likes me a lot!”  What more could we ask for our child than to feel loved by his doctor?

Zack had the manometry testing again on Friday.  On this day we could tell that Zack’s external sphincters were clenching.  That made me sad.  One of the reasons Zack had surgery in the first place was to help his body rest and heal and help him relearn how to stool better. To see the pressure in his sphincter like that after all this time was disheartening.  Six surgeries and bazillions of tests later, that was the last thing I hoped to see.  Zack’s doctor was not able to give us the results of the test as he was not in the room and needs to go back and analyze the results.

Today Zack had a barium enema..kind of…The radiologist did not use barium, but I am unsure what the fluid is actually called.  The test was given to look at the area near Zack’s reattachment.  It looked mostly normal.  As part of the test, Z was supposed to push the fluid out.  He tried and tried and could not get it to come out.  Story of his life. During that portion, they decided to add more contrast and “may have” seen a little narrowing, but who the heck knows.  All I know is that my son has buns of steel.

And so now we wait.  We wait for the rest of Zack’s stool cultures to come back.  We wait for biopsies to return.  We wait for the manometry to be read.  Most of all, we cross our fingers and hope that all of these tests find something to help our guy.

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 Z before his procedure.

Hug your babies!

~ Dawn

Cincinnati Part IV

Did you know Cincinnati is lovely in the fall?  I mean, I have heard it is….I wouldn’t really know, but the hospital is lovely this time of year.  It reminds me of the three other times we were here.  The fluorescent lighting, the climate controlled environment, the clean antiseptic smell.  The people are pretty nice as well.

I have decided that  we have been here entirely too often as the doctors, nurses AND cleaning staff are remembering us now.  I am fine with having one hospital remember us.  We like walking into Walter Reed and being greeted by the staff there.  It feels comfortable and nice to know that almost everyone knows Zack and his story.  We know what to expect there and where to go to eat and how to park and how long the pharmacy wait will take.  All things that make a place familiar, even if we really would rather be at the beach….in the Caribbean.

We are now on our fourth visit to Cincinnati Children’s hospital since June.  We have been inpatient here 31 days in the past 4 months.  The nurses now remember both Zack’s name and our names.  While it may be true that you detect some whining, I am really mostly thankful for that.  I am grateful for all of the people who have been working tirelessly to figure our boy out.  AND…I am ready to be home.

I realize that we have it good.  We only have intestinal issues.  At some point, it is highly probable that Zack’s issues will be figured out and resolved.  In a few years, this will all most likely be a distant memory and we will be able to look back and see all the ways our lives were enriched by all of the people we have met.  From our doctors who graciously pretend like they have all the time in the world to answer our long lists of questions and return our frantic texts about our latest problem, to the nurses who steal our boy’s heart and make this mama smile (and do most of the dirty work), to the friends we make on the ward that change our lives for the better, I am always amazed by the number of people we are able to count as friends that we would never have met if not for these silly intestines.

I guess God has plans for us to meet more new friends because we get to stay another night here in the hospital while Zack’s doctors work on tweaking a few things.  He is still not stooling like they want.  His belly is still bloating/distending with his feeds.  His iron is still a little out of whack and we are working on changing his medicine dosages.

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 Zack was prety quiet today.  Notice he is voluntarily in the bed….

Hopefully we will get most of those things figured out in the morning so we can be discharged later in the day tomorrow, We will then head home for two to three weeks before heading back to do it again.  His surgeon said that she wants to dilate his stricture another time to make sure it does not begin to close up again.  If he continues bleeding (likely) we may do another Dextran infusion then as well.  However, if he does well over the next week or two, our next visit could just be a sedated OR procedure without an admission…a girl can dream. Still, it is a 500 mile drive each way….totally worth it if things settle down.

And so we move forward one day at a time, happy to see how far we have come and hopeful that there will be an end soon.  Even if we keep on traveling on this road, at least we can say our lives are richer for the people we have met along the way and that, my friends, is a blessing.

~Dawn

 

Home For Now

When we checked into Walter Reed last Wednesday, Zack could not walk from the parking garage into the building.  He was so weak that he rode in a wheelchair to see his doctor and then to be admitted onto the ward.  He was so pale that his feet were a freaky version of white and his tummy hurt all of the time.  I am happy to report that after his “tune-up” our boy has regained some of his spunk.  I like spunk.

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Zack’s iron levels are improving.  There are several different markers for how your body uses iron.  I do not know what they all mean, but I do know that the number that shows how hard his body is working on making new red blood cells is up.  That is good.  He has pink lips again, his ears almost have some color again and his feet are less freaky looking.  All good things.  Even better, his energy level is returning.  When we left the hospital yesterday, Zack walked on his own all the way to the car.  That makes me pretty happy and Zack noticed it as well.  In fact, Zack commented that his doctors must be crying happy tears because he feels so much better.  Amen.

One of the issues Zack has struggled with his entire life is eating well.  Through the years, we have done a pretty good job of getting enough calories into our guy.  For a few years he even tracked along the 50% curve on the growth chart.  Sadly, for the past few years he has been dropping on the chart and is currently below the 5th%.  Since surgery, Zack has had a lot of pain with eating as well and this has led to long periods of Z not eating.  The decision to give Zack and NG tube was bit hard emotionally for me and for Jim. How will Zack feel about having a tube in his nose?  Is there anything else that might happen that we do not know about?  If there is something else, do we really want to know?  We are getting a little tired here…But then we regrouped.  Just needed a moment to process.

Obviously, we wanted to do what was best for Zack.  His doctor explained that his poor nutrition could be contributing to his belly pain.  Poor nutrition hinders healing, energy levels and a host of other things.  Zack was just not getting better, so we knew we needed to have the NG tube placed.  Surprisingly, after the initial yuck of placing the tube, Zack has done really well with it.  His belly pain has dropped significantly as well.  He is currently receiving all of his calories through the pump, but is allowed a few bites of graham crackers and jello and to drink his precious G2 (lower sugar Gatorade).  Beginning next week, we will introduce full liquids as well.  I am unclear about how long Zack will be on his feeding tube, but I am thrilled he is doing well with it.

As Zack and I drove home, Jim was home getting Zack’s new Kangaroo Joey feeding pump set up.  Sadly, the guy who dropped it off did not know how it worked, so we spent a bit of time figuring it out.  That was a bit frustrating as he was supposed to be able to explain it all to us.  Happily, it is much like the one we used in the hospital.  It took a little doing, but after calling and talking to our nurses, talking to customer service and searching Google, we were up and running.  Zack loves that he has the option of wearing his pump in a backpack so that he can do all the fun things he likes to do and not be tied to an IV pole.  It is actually pretty handy.

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Z getting ready to check out the neighborhood for the first time in 10 days.

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 Wearing his snazzy backpack.

So now what?  Well, Zack seems to be having an issue getting stool out.  Over the past two weeks it has become evident that he is going several days without any output and then has a day where he becomes very uncomfortable and distended and then it all bursts forth.  Real life people, real life…When this happens he is in considerable pain, vomits and bleeds from his bottom.  We know that this is most likely from his stricture at the anastomosis (reattachment) site between his rectum and descending colon and that the stricture needs to be fixed.

Obviously, we would like to have this problem addressed as soon as possible.  After much discussion between our doctors here and Z’s surgeon in Cincinnati, we have decided to head back to Ohio in the near future.  To fix the stricture, Zack will go to the OR where he will be scoped before the procedure to see how the anastomosis (reattachment) looks.  His surgeon will then dilate the stricture with some sort of balloon.  Once that is done, she will scope him again to make sure that there are no complications and that is it.  It is not surgery, but it is performed in the OR.  Usually, this procedure is a same day procedure, but because Zack’s body has been difficult lately, his surgeon wants to admit him overnight just for observation.

Zack’s surgeon will be out-of-town next week.  Jim has a business trip the following week, so we are trying to decide if he will cancel his trip or if we can wait a few days longer to travel to Cincinnati.  We should have it all planned out by the beginning of the week and look forward to solving yet another issue for our guy.

One lingering concern is whether or not Zack is having motility issues as well.  When we went to Cincinnati for motility testing, all the tests came back normal.  That was before he was reattached.  Now that his intestinal tract is put back together, there is some question as to whether or not his motility is actually normal. It does not feel as though it is…but that is a problem for another day.

Today we are happy because Zack is home to help celebrate his big brother’s birthday.  He was most upset yesterday when his tummy was not feeling well.  He was crying because he needed to get home to his big brother for his birthday.  He told everyone he was feeling awesome, even though he clearly was not, because he did NOT want to stay another moment in the hospital.  He got his wish and is so excited to be home to celebrate Jake’s birthday.   I think he is most looking forward to giving birthday spankings and presents.  He’s all about the presents.

Thank you to everyone who helped us over the last week and a half.  We appreciate all of your visits, meals and calls.  Thank you to everyone who helped shuttle Jake to and fro and to our awesome friends who put together a birthday surprise for Jake at his Youth Group overnighter.  My heart was happy to know that Jake’s birthday was extra special.  You guys make me smile.

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Um.  Yum!  Chocolate cake!

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My 17-year-old.  Wow.

When we get more information about our trip to Cincinnati, we will update our blog.  Until then, I am hoping for a few uneventful days.  It is about time.

Hug your babies!

~ Dawn