Sickness, Graduation, Fun and Waiting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Before Commencement

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

After the Masters Convocation in the morning.

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

Hug your babies!

~ Dawn

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

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

Manometry Day

It has been a crazy few days for Zack.  Yesterday was so busy and LONG that I did not have a chance to write an update.  Now I have so much to say that I am pretty sure I’ll forget lots of important things and equally sure I’ll ramble.  Forgive me, please.

Yesterday began bright and early with manometry testing. All was fine until the introduction of medication.  After about an hour of testing, the manometry team put an antibiotic (erythromycin) into his IV which caused him to become flushed and feel sick.  The medication is used to stimulate the small bowel.  After another hour, Zack was allowed to eat pancakes and boy was he a happy child!  He ate them so fast he gave himself a stomach ache, but I think he thought it was worth it.

The test continued for another hour or so and then the nurse added another medication to Zack’s IV.  I do not remember the name of it, but Zack felt a lot of discomfort.  We were told it was also for the small bowel.  I am not sure if the first drug did not produce the waves they were looking for or if it is standard procedure.  Zack has never had it before.

At long last it was time for the large intestine medication to be given.  Zack’s colon did not respond how they had hoped, so they administered another dose. The medication causes lots of cramping.  Zack was not a happy camper.

Sadly, during the administration of this last dose, Zachary’s stoma prolapsed.  We knew it was only a matter of time, but really?  At least we were in the hospital.  The strange part was that Zack was on his back in bed.  It was not as large as some of his other prolapses, but it would not reduce on its own.  Seven hours later and several attempts at reducing it by the surgery Fellow, that pesky stoma finally went back in…..and then there was quite an outpouring of “stuff” from the stoma. Try not to think too much about that.  Let’s just say that our nurse last night deserves a serious raise.

We also met with the GI team on service to discuss a number of tests they wanted to perform.  They checked Zack for viruses, parasites, cystic fibrosis, malabsorption issues, nutritional status and a number of other blood work type things.  Because some of the things they were testing for were potentially contagious, Zack was placed in isolation.  That was fine yesterday when he felt bad, but today it was hard as Z felt pretty well and wanted to go to the playroom.  It is the highlight of the hospital after all.

Because Zack has had “Angry Badger” issues, we met with a pediatric psychologist to discuss the situation.  Her assessment was that Zack is suffering from medical trauma and could benefit from counseling.  That was fun to hear, but not really surprising.  One good thing that came out of her evaluation is that he is “a well adjusted child in all other areas” and only has anxiety regarding medical procedures.  It was actually one of the best parts for me of being here.  She gave us some great tips and we started trying to incorporate them right away.

At five o’clock this morning Zack needed to have labs drawn. His IV was not drawing back so he had to have a needle stick.  Five o’clock in the morning and needles are usually a recipe for disaster, but I am happy to say that Zack held it together and did a great job.  He was still scared, but was able to work through it with breathing and distraction and talking and a wee bit of crying.  He did so well that his nurse gave him a Lego police truck.  Talk about positive reinforcement!  So positive in fact that he has been awake ever since….

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Around lunch time, Zack’s GI here in Cincinnati came in to discuss the manometry results.  We learned that Zack’s colon had no propogating waves at all until right above the anastomosis site.  That means his colon does not function from the beginning of the large intestine until right above where he was reconnected. It begins to function above the anastomosis for a very little bit and then stops again until it reaches his rectum which functions well.

We also learned that his high output is a result of secretory diarrhea.  I am not sure if I completely understand this yet, but for some reason his intestines secrete too much fluid.  The doctors are trying to get a handle on this because it needs to be under control before we do anything else.  That meant more blood work, a change in formula and antibiotics. Because his IV would not draw blood today a new IV had to be placed.  Despite his great effort this morning, this new IV was just too much for him to handle today. The Vascular Access Team decided that since his IV still worked in his left arm they would leave it in place and put a new one in his right arm to be used for blood draws.  They were wonderful in granting Zack’s request to leave his hands free for playing Wii.  His tests for infectious things came back negative, so he was finally allowed to head back to the playroom.  Behold the two IV wonder:

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The last person we met with today was the dietician.  We were thrilled to learn that Zack is now in the 30th percentile for weight!  Everyone seemed pleased overall with his growth and would like to see him bulk up even more before his next surgery….and there will be more surgery.

We expect that Zack will be discharged tomorrow.  Zack is counting on it, so I hope nothing else happens.  The GI on service this week is not super comfortable with Zack leaving with his prolapsing issues, but Jim and I feel like we have done this for so long we can handle it.  The only hesitation I have is how long it took Zack’s stoma to go back in last night, but if that were to happen here or in Maryland we would do the same things and home is always the better place to be.

We believe Zack will be having a colectomy (removing most of his colon) in the next few weeks.  Zack’s surgeon is currently in China so we have not made any concrete decisions regarding which surgery to perform. We do know that she is planning to add Zack to her schedule the week after Thanksgiving.  That is really soon!

Whew.  I hope I covered everything.  Time is almost up here in the playroom.  That is my signal to get off this thing and say good night.  Fingers crossed that we can bust out of here tomorrow.

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

Good News and Ostomy Advice

photo (9)We are celebrating lots of things around here these days.  Today marks week number 3 since Zack was discharged from the hospital.  Yesterday Zack was released from the surgeon, again, hopefully for the last time until 2015.  After much work, Z gained 2.4 pounds and has actually tried some new fruits.  Last week Zachary attended 5 full days of school – in a row!  It feels like we are in the middle of a good dream, but it’s real which makes it even better.

That last paragraph was fun to write.  Only happy, exciting and fun facts were allowed.  Of course, we are still working hard to get our wafer to stick for more than 24 hours.  This post is giving me deja vu…that’s right, we went through this same issue last time…Happily, I have learned that each new ostomy is going to require some tweaking and the products we used last time might not be the right ones this time.  Sadly, I’m not that calm and objective about it at 2:30 in the morning…almost every night….since we came home…three weeks ago.  Sigh.

I just keep telling myself and Zack that at least we are home and not in the hospital.  We have a routine of sorts in place now.  When Zack wakes up, if he needs his bag emptied, I get up and empty it and he goes back to bed.  When he needs a wafer change in the middle of the night, Jim and I both get up.  Middle of the night changes always involve a mess.  Jim strips Z’s bed and gets the new sheets on, while I bathe Zack, attach the new wafer and snuggle him back to sleep.  This works well as this process usually takes an hour.  Fun, fun, fun!  I often feel as if I have a newborn again as I rejoice in getting more than 4 hours of continuous sleep.

In an attempt to write helpful facts about ostomies in case anyone ever reads this looking for advice (hey, it’s my blog and my dream…no laughing), let me tell you give you a glimpse into our wafer changing routine:

1.  Hollister adult wafer 14203 – I have to customize the cut as Zack’s mucus fistula is directly beside his stoma.  I cut this out before doing anything else.  Have I ever mentioned I’m not good with scissors?  That’s a story for another day….

2.  Apply stoma powder around the edge of Z’s stoma so that we have a mound of powder, but not on top of the fistula.  Pat down powder.

  • The stoma powder is new to us this time as Zack’s skin has been a bloody mess.  Because this is the second time this area was used for a stoma, the incision is actually outside of the stoma, not under it.  Stoma powder helps this area heal and I find it to be an amazing help.

3.  Apply ConvaTec No Sting Barrier Film.  We use two because after we apply the stoma powder in a perfect mound and apply the first skin barrier wipe all around the skin that will be covered by the wafer, Zack moves and our perfect mound disperses.  I fix it and apply another wipe and strongly suggest he not move…in a super sweet, loving voice.  Especially at 2:30 in the morning.

4.  Peel wafer and apply stoma paste.  I have forgotten this before in the middle of the night.  Zack always reminds me now because he knows if I forget this vital step we are doomed…doomed, I tell you!  Without the stoma paste we will not get more than 12 hours out of a wafer.

5.  Apply wafer, making sure to push firmly around the stoma and then peel the rest of the backing off making sure the fabric is smooth and without any bubbles.

6.  Attach Hollister bag 18193.  We have only forgotten to close the bottom of the bag once.  Don’t worry, you won’t make that mistake twice!

See, that doesn’t look hard!  Anyone could do this!  Why on earth it isn’t sticking was beyond me until yesterday when one of our dear ostomy nurses came to our rescue.  We’ve been seeing them for 4 months now and each time they come up with great advice I have never read or heard before.

We have always known that Zack’s output was too watery.  When he was obstructing, the doctors wanted it this way.  I’ve been told that the output should be thick, like yogurt.  I have yet to see that.  Zack takes a 2 mg. Imodium pill in the morning with breakfast and another at night with dinner to help thicken things up.  At times it appears to be working.  An hour later it may be completely watery again.  I have never really worried about this, because I did not see what difference it made and emptying a watery bag is so much easier than emptying a thick bag.

Yesterday the nurse told me that our main issue is the watery output.  When the output is watery like that and Z lies down, it flows back to the opening in the wafer and starts eating away the stoma paste and leaks through.

I think Oprah calls these revelations Aha Moments.  How simple is that?  It makes perfect sense.  I feel vindicated.  No longer is my wafer applying ability substandard.  I can blame it on the output.  Victory is mine…I mean Zack’s…because Zack is the one who has to deal with the sore skin.  Zack is the one who cries because he needs a new wafer.  I never cry…

How to thicken it up enough, but not too much, and get it to stay the right consistency is another story.  A story we will continue to work on with our GI doctor.  However, I did learn a secret.  Marshmallows.  Marshmallows will thicken the output.  I’m afraid to try this before talking to our doctor though.  I know it won’t cause an obstruction, but I’m a fraidy cat and am unwilling to take any chances without talking it through with our GI first.  If he gives us the ok, we are trying that trick for sure.  Come on!  What kid doesn’t like marshmallows?

Our nurse also told gave us a tip about removing the super goopy stoma paste.  Stoma paste will usually dissolve over time, so if you can actually get the blasted wafer to stick longer than a few hours, your wafer will come off smoothly, without issues.  When your wafer fails in less than 24 hours, you are left with a sticky, messy residue that leads to much frustration and many tears removing.  UNLESS you know the secret…Let it dry in the air for a time and it will peel right off.  Seriously?!?  Why did it take 4 months for me to learn this secret.  We have been having Z soak in the bath to help loosen the wafer.  This has been great, but when he gets out of the tub, the stoma paste is an awful mess.

The stoma paste removal has kept us up for hours before and caused much agony.  We tried the secret today and it worked!  Now we know the secret.  There should never be secrets in stoma world.  If you have a new ostomy, I hope you learn this before we did…you are welcome.

Before I end this post, let me be clear.  Things are getting better everyday.  We are no longer watching Zack every single moment, waiting for something else to happen that will take us back to the hospital.  Zack is back in school, our family is getting back into a routine, we actually eat at home again (Yay!), and Zack’s energy level is almost back to normal.  This wafer issue is an inconvenience to be sure, but in the scheme of things, this is such a minor thing.  Zack is home and healthy and our hearts are full.

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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Here we go…

Zachary is scheduled to have surgery on Friday, time to be determined. How is that for an opening sentence? It’s all I’ve got.

After meeting with both Zack’s surgeon and GI doctor today it is clear that he needs surgery sooner rather than later. His x-ray’s today showed no improvement from discharge even after a strict liquids only diet. In fact, his surgeon’s head resident said they even looked a little worse. His stomach continues to go in cycles of not too bad to distended enough that Zack wants to be drained.

Zack will be admitted on Thursday evening with surgery at some point on Friday depending on OR availability. Z’s surgeon explained that he will open Zack up along the main incision from last time that begins above his navel, around his navel and down a few inches from there. It could be bigger, but won’t be smaller than the original incision. There are a lot of unknowns about this surgery. Here are some scenarios:

1. They go in, find an adhesion, remove it and are done.

2. They go in, see something wrong with the ostomy and have to move it.

3. He may come out without a mucus fistula or with a new ostomy in a new place altogether. Remember, his mucus fistula is on his right side where the original loop ileostomy was before the revision in June. Now it just leads to the large intestine and secrets mucus, but acts as an access point for testing and “stuff”.

4. They could have to resect more bowel.

5. If they need to move the ostomy, it will probably end up back on the right side which is closer to the place the small intestine would be inside if nothing had been messed with at all.

As you can see, nobody can really say what will happen on Friday. Zack will spend one night in the PICU (if all goes well). In June, Zachary had lots of pain that was hard to control. He ended up staying in the PICU for 5 1/2 days mainly because of his pain. This time he will be given an epidural while in surgery to help with the pain. He will need to be in the PICU as long as the epidural is in place. The surgeon said to expect him to be in the hospital for a week.

Happily, we have just completed enrolling Zack in our county’s Home and Hospital Teaching Program. This program allows students who are unable to attend school due to illness to continue to receive instruction either at home or at the hospital. We were a little concerned about the logistics because we live in a different county than our hospital. However, our hospital social worker can facilitate all the craziness for us and in the end a teacher from the hospital’s county will come to the hospital to work with Zack and our county will be billed. Tomorrow Zack will meet the teacher who will come to our home to work with him before he returns to school as well as if he is sick again – praying this will not be the case! I know he will miss all his friends at school, but I am thrilled that he will actually get some instruction during his hospital stay.

Other exciting news of the day….our Pastor and his sweet wife brought the most delicious dinner over tonight. Oh my, was it ever scrumptious! Our neighbors brought us a homemade apple pie made with apples they picked themselves. We can’t wait to put Zack to bed, break out the ice-cream and eat that puppy. Yummm-o.

Zack and I also had an unscheduled Toys “R” Us visit today. I don’t usually spend a lot of money on toys for my children. They have plenty and there really isn’t anything they need. I’d rather spend money on experiences and other fun things. Today was a special day. I felt bad for my boy, it’s been a long few months, and wanted to spoil him a bit. We got some Rescue Bots and a Rescue Bot costume for Halloween. The toys are for the hospital, but it was exciting watching him carefully decide which toys he wanted.

So there you have it. Zack will go to school tomorrow and Thursday. We will check-in to the hospital after dinner and get his IV started. Zack’s biggest concerns are when he can eat real food again AND whether or not he will have to have another NG tube. He’s been a trooper and I can’t wait until this is all over.

We appreciate your prayers. We would ask for prayers for Zack’s surgeon(s) on Friday. That they would be able to clearly see what the problem is and be able to correct it. Prayers for Zack’s body to handle the surgery well. Prayers for Jake as he begins another week of being parentless. Finally, prayers for Jim and me that we would have the strength and energy to make it through the week.

I’ll leave you with this song by Mandisa. I’ve been hearing it all summer and it makes me think of many people. However, right now it is a good reminder to me that God’s is in control and bigger than even this. Enjoy!

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

A Bump In The Road

Hola!  Have you missed me?  We had a little setback here and I just did not feel like writing about it until now. Much to my surprise, I’ve learned that people other than my family actually read this blog!  Last night our small group from church met at our house and one of the guys asked me why I stopped writing.  Whoa!  You read my blog?  Thanks!  That was such an unexpected blessing in the middle of a yucky week.  Let me tell you all about it.  You’ll probably need a drink and a comfy spot to snuggle into because you might be here for a while….

In the over 22 years my husband has been in the military, we have never lived by family.  Living near DC, we are blessed to be near lots of family.  It can be overwhelming at times, but it is mostly good.  One of the best parts is that my boys get to see some of their Aunts, some of their cousins and one of their Grandma’s often.  Last Thursday, we had a “date” to have dinner at Chick-Fil-A with Grandma, Aunt A and two of our cousins.  Zack was so excited.  He doesn’t like Chick-Fil-A (crazy, I know), so we packed his dinner and off we went.  A fun time was had by all.  Seriously.  It is so fun to watch Zack play with his cousins.  He loves them to pieces.  I think Jake, our other son, had fun as well since he was able to bring a friend along.

After being in the play area, it is my rule that the child must be bathed.  Who knows what germs lurk in there!  Upon entering the bath, Zack started complaining that his stomach hurt and that he had a cramp and needed Motrin.  I thought it was a bit odd, but he does comment on his stomach hurting from time to time, so I didn’t really give it too much thought.  Ten minutes later, he again commented on his stomach hurting.  My interest peaked.  From then on, Zack was crying in pain every 10 minutes.

Jim and I changed his wafer, got him into bed and tried to make him comfortable.  At 11:45, after we decided he really was not feeling well, we finally gave the child some Motrin.  Remember..I told you we don’t like to dispense meds around here!  Zack finally fell asleep sometime after midnight and I headed to bed.

At 3:00 a.m., Z began crying again.  This time he also began vomiting and it was not a pretty thing.  Every 15-30 minutes he was sick.  He started telling us that he wanted us to call his doctor, that his doctor knew everything and would be able to solve his problem.  It was at this point that we knew he was serious about feeling bad.  I “slept” with Zack and tried to comfort him until it was a reasonable hour of the morning to text his doctor.  By 7 a.m., I decided the hour had come.  His doctor said to take him to the ER and off we went.

By the time we arrived at the ER, Zack was so weak he could not walk on his own.  His eyes were sunken and he looked terrible. He was taken right back to a room, an IV was started and all kinds of people were called.  We went to x-ray and then saw Zack’s surgeon who happily reported that Zack did not have another obstruction and that he was fairly certain that whatever was going on with Zack was not surgical.  Always good to hear!  We saw the pediatric resident who felt that Zack had a stomach bug and told us that his white cell count was high and his glucose was pretty high as well, but both could be explained by the sickness.  We also saw Zack’s GI doctor and he agreed with the other doctors.  After some discussion between all the teams, it was decided that with his history, and the amount of fluid he was outputting, it would be best if Zack were admitted.

Thus began our four day stay at Walter Reed.

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Did I mention that on that same day our dear friends were arriving to visit us from Germany?  We had plans to have fun and stuff.  Luckily, our friends were gracious and understanding and made their own fun with Jake.  One night when I came home from the hospital, all of my lightbulbs had been changed out to black lights and there was a serious nerf gun battle occuring, complete with loud music and strobe lights.  I’m happy to say that nobody shot my sprinkler heads or there would have been some mighty sad people in my house.

Back to Zack.  Jim and I figured we would take Z to the ER, they would give him fluids and we would be on our way.  Needless to say, we did not bring anything useful, like say clothes, or a toothbrush, or something to sleep in or anything to do while waiting for Zack to recover.  Oh, and our laptop is kaput!  How can one type without a laptop?  We really need to get a new one soon!  Anyway, my sister came to the rescue and brought me a bag full of goodies.  Bless you, Carie!  She was also able to witness all the staff in their infection containment gear as it was decided that Zack should be tested for an infection called C. diff.  The doctors felt he was at risk after his hospital stay this past summer.  He did not have it, thankfully, but we got a good giggle out of watching everyone suit up.  I don’t know why we didn’t have to be careful around Zack, but I guess that is something I can live without knowing.

When Zack was admitted, the ER did not have any other cases similar to his stomach bug.  The doctors told us that by Saturday, there were lots of other children coming in with the same symptoms. One of the lessons we learned from this virus is that what is a normal stomach bug for most kids can quickly become dangerous for a kid with an ileostomy.  We knew Zack was more susceptible to dehydration.  The doctors drilled that into us over the summer.  I guess we were feeling pretty confident about our hydrating abilities after surviving all those hot summer days without incident.  Needless to say, we were totally shocked at how quickly Zack dehydrated with the stomach flu.  He started vomiting at 3:45, talked to the doctor at 7:00 and we were on our way to the ER by 8:00.  I don’t think we could have done things differently.  We are hopeful that maybe this bug was just particularly nasty and that next time it won’t be as bad.  Be assured that if it does happen again, we will be watching him like a hawk!

Whew.  Are you still with me?  So we have other children.  Shocker!  I try not to talk about them without their permission, but this story goes along with the stinky week.  Our oldest son attends the University of Colorado in Boulder.  You know, the state with all the flooding?  Yep.  That one.  Our son sent us a picture at 3:15 a.m our time on Friday morning showing us how his basement flooding.  The basement happens to be the location of his bedroom.  I woke up, saw the photo,  turned on the weather channel and started trying to reach our guy and NO ANSWER!  I tried reaching him by FB, txt, friends, etc. and we could not find him for over 5 hours!  It turns out he was sleeping.  Ummmm…..We now have a rule in our family that if you are in a natural disaster you MUST keep your phone on……I am happy to tell you that he is fine.  My nerves, however are recovering.

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Just for fun, I thought you might enjoy this video of the flooding on campus.  The student in the innertube is Drew’s roommate.  They are in the honors program.  Yes.  It’s true.

To top off the week, Zachary started complaing that his stomach was hurting again over the weekend.  His output was up to 1200 ml/day.  His output should be about 400 ml/day with Imodium.  He wasn’t eating, had little energy and was totally freaking me out.  His was down to 700 ml yesterday and looks like it will be about the same today.  He is eating a bit more, but still not drinking much.  His energy is improving and he made it through the school day without incident.  Here’s a picture of how he was feeling.

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Tonight, as I put Zack to bed, his eyes were red, he was super tired and my mama radar tells me he still does not feel well.  His endoscopy procedure which was to take place on September 10 was postponed until the 27th.  If he is sick again, we will have to postpone the procedure again.  In the end, I guess it won’t really matter.  I just find it hard to gear up for sending my guy off for general anesthesia and then having to regroup and do it all over again.  It is draining.

I also have to admit that I was surprised by how exhausted Jim and I felt when we got home from the hospital this time.  It was a much easier stay, less serious, and much shorter, but we both felt completely drained by the time we got home.  After a few days to reflect, I believe it is because we don’t sleep well in the hospital, seeing Zack sick is hard and it brings up questions about Zack’s future that really nobody can adequately answer for us.

I debated writing this post because I really didn’t have anything nice to say and we all know if you don’t have anything nice to say, you shouldn’t say anything.  But then I thought about why I started this blog in the first place.  To help other families learn from our circumstances. The main thing I want everyone to know is that dehydration is no joke for kids with ostomies.  It can happen fast.  Luckily, we made it to the ER and they hydrated Zack and all is well.

I also realized that it would be really wonderful to meet another family with a child who has an ileostomy.  There are things that would be great to discuss with others in our same situation.  I’m sure we will meet another ostomate one day, but until then, hopefully something I write will help another mom.  If not, at least I’ll be able to keep our family and friends up-to-date on our crazy life around here.  If you made it this far, thanks for reading!