Gastroenteritis Part Deux

Shortly after writing my last post, Zack’s GI called and we decided it was time for him to be admitted. Jim and I do a pretty good job of keeping Zack safe here. However, the sheer volume of poop coming out of his ostomy was making everyone nervous. Total output by the end of the day was 3,995 ml bringing his total output over three days up to THREE GALLONS! This is what three gallons looks like:

That is a lot of poop. We suspected Zack’s sodium levels were lower than Tuesday’s Emergency Room visit and that was indeed the case. I was disappointed, because I thought that by getting fluids and correcting his electrolyte irregularities on Tuesday, we had “tanked” Zack up and that it would last for a few days. I was wrong. I learned that just because he was given fluids to get his electrolytes back into balance, fluids are lost volume for volume. This means that if you continue to lose fluid faster than they are replaced, your electrolytes will soon be out of whack again. And so they were…

When we arrived at the Emergency Room, Zachary’s extremities and bottom lip were purple. The doctors told us that if he had been lethargic they would have been very concerned. They were still not thrilled, but encouraged by Zack’s energy level. The purple extremity situation lasted throughout his admission. The doctors continued to be perplexed. I am happy to say that once his electrolytes were back in the normal range, the purple weirdness went away.

Zack’s body did another crazy thing. His output turned clear. That has never happened before. It has been like water often, but never clear. Z’s doctor told us that he believed there were probably some electrolyte pumps locked open because of his illness. Water in the body always follows the electrolytes. It does not take much for Zack’s gut to get into trouble and it takes longer than a regular gut to recover. I guess I needed to learn lots of new things this admission.

Zachary did extremely well with his IV placements on Tuesday and the first one for this admission. Sadly, that first one blew and when Zack learned he would need another one placed, angry badger made a dramatic comeback. A working IV was finally placed in the ER and we had to stop at X-ray on our way up to the ward. Zack was not happy. He unscrewed his IV line from his arm. When we got upstairs, the doctors wanted him attached to leads. Zack completely lost his mind then. I believe he scared the resident on duty that night. The doctors finally gave into his hysterics and said that because I was spending the night with him, they would allow him to keep the leads off. They also told him that meant that he would have to have his vitals taken more often.

I wish I could say that he calmed down then, but I cannot. By the time we got up to the ward it was 1:00 AM. There were sick patients sleeping in the rooms around us. Having a child losing their mind during the day is one thing, but at night it is even more upsetting. Zack did not want anything to do with the hospital. He told me that he hated everything about being there. I think it must be a bit like labor. After labor is over, you can forget all about the pain until the next time you are ready to give birth and then it all comes flooding back. I believe being sick, being tired, and being scared of all things hospital related got the best of our little fighter.

When the nurses asked Z to get into bed, he refused. He was still in full angry badger mode. I was in full sweating mode. It is NOT fun to see your child having an anxiety attack like that. Zack’s nurse happened to mention he was floating from the PICU for the night. That led me to ask about one of Zack’s most favorite nurses of all time while we ignored Z’s tantrum. When Z heard that his nurse knew our friend, Chris, he immediately calmed down and agreed to climb into bed. I am sure the entire ward rejoiced. I was afraid the morning would be just as awful, but when Z woke up, he declared that he was ready for a great day and that is just what he had.

I am happy to say that angry badger did not return for the rest of our visit. The next day was spent advancing Zack’s diet from clears back to a regular diet. One of our favorite GI doctors was on service and we were able to get his thoughts of Zack’s intestines. People continued to ponder Zack’s purpleness and Zack’s output came down to 2,400 ml. While that is still a lot, it is within the realm of Zack normal. Zack’s pediatrician checked in with us and we now have a plan to check labs when Zack’s output reaches 3,000 ml. It seems as though the CeraLyte helps us keep Z safe until we reach that level. I am so glad that there are people smart enough to invent products like CeraLyte and g-tubes. They have literally helped us save Zack’s life several times.

Zachary began bugging the staff about being discharged the next day. He was anxious to get home, because we had a water station to man for the Nathan Chris Baker Foundation’s Great 5K. Our family has helped with the water station for the last several years as a way to thank this organization for all of the things they did for our family when Zack was super sick. Zack is a master at perseverating and he had discharge on the brain. He eventually wore the doctors down and they agreed that we could manage well at home. While we were waiting for the final decision to be made, some special guests came to visit the kids on the ward. Zack was just a little bit excited.

The Foundation 4 Heroes sure now how to make a boy smile. Batman is his favorite super hero – as evidenced by his pillow case. You should check out their website and see all of the great things they do.

I am happy to report that Zack did make it home that day. He was able to help man the water station for the Great 5K race the next day. In addition, many of our friends rallied to help us as we were unsure if Zack would be discharged in time. We are grateful to all of those who helped us make sure the water station was up and running this year.

Zachary’s doctors are talking with their colleagues in the area to see if they have any ideas of how to help us slow Z’s output down. As his GI says, “We can’t keep doing this.” I agree. Zack is always just one bad illness away from disaster. The GI on service during Z’s admission said that if not for CeraLyte things would have been very bad. We are still waiting for an appointment in Boston with the Center for Advanced Intestinal Rehabilitation. I am not sure when that will happen, but I am grateful that Zack will be able to be seen by doctors who specialize in kids with crazy output.

As if all of this was not exciting enough, our son, Jake, graduated from the University of Maryland this week. Drew and Lindsey flew in from California and there was much rejoicing in the land. I am so thankful that Zack decided to be sick the week before graduation. Isn’t he such a thoughtful son?

I promise Zack had on a nice shirt during graduation…….

Jake worked extremely hard so that he was able to graduate in three years. He also had the honor of being a Senior Marshall at graduation. Jake has had to sacrifice a lot while Zack has been sick. Being able to have our whole family here to see him graduate was extra special.

Hug your babies!

~ Dawn

Sickness, Graduation, Fun and Waiting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Before Commencement

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

After the Masters Convocation in the morning.

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

Hug your babies!

~ Dawn

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.


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.


Getting an X-ray in the Emergency Department.


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.


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…


Hug your babies!

~ Dawn

Welcome March!

Ah, March…one day closer to St. Patrick’s Day, one day closer to spring.  More importantly (to me), Zack made it through the entire month of February without being hospitalized!  I am so excited!  Zack has been in the hospital every month since June of last year.  Let’s review.  It will be fun, I promise.  June 18-23 – surgery in Cincinnati, July 13-15 – testing in Cincinnati, August 19-22 – small bowel obstruction, Walter Reed, August 25-27 – intestinal prolapse gone wrong, Johns Hopkins, September 6-16 – reconnection surgery, Cincinnati, October 15-24 – figuring out Z’s pain, iron replacement, NG tube, stricture, Walter Reed, November 10-12 – stricture dilation, Cincinnati, December 1 – stricture dilation and scope, Cincinnati, January 27-30 – testing, Walter Reed.

See, I told you that would be fun.  Zack and I have been giving one another high fives to celebrate and doing our happy dances.  I would show you my happy dance, but it would blind you. Instead, I’ll treat you to this little gem.  Zack doing a happy dance in the basement to one of his favorite songs, “Cray Button”.  He likes it because it was his big brother’s favorite song at one point and let’s face it, big brothers are cool.

The good news does not stop there. Tomorrow marks two weeks since Z began taking steroids.  At first I was worried nothing was happening.  However, slowly but surely we are starting to see some changes.  Zack’s pain level has significantly decreased.  Since starting the steroids, Zack has only woken twice from pain.  That means he has been sleeping through the night like a real boy!  It amazes me how much sleep he requires, but he is making up for a LOT of lost sleep.  He still asks for Tylenol every day, but he is down to asking only once a day instead of multiple times and he is no longer having pain after eating.  His stomach is still bloated after eating, but that is better than being distended all the time.  In between meals, his stomach size will sometimes even decrease.  Our goal is for it to be “flat as a pancake”.  While we are not there yet, it is improving.

We are also starting to see signs of one of our favorite side effects of prednisone…our boy is HUNGRY!  What?  Zack is actually asking to eat meals and between meals he is asking how much longer until the next meal.  Today I looked at his face and had to do a double take.  He looks so different to me already.  His little arms and legs are starting to look as if they have some meat on them rather than being all bone.  We are all anxious to lose the NG tube and hope that will happen real soon.  I am concerned about what will happen once Z is off the steroids and his appetite goes back to normal, but that is something we can address later.  Check him out!


We are still having some issues that concern us.  Zack was unable to stool on his own for over five days.  He asked to be irrigated each of those days because things were “stuck”.  He had a lot of pain leading up to each of the irrigations and we did not care for that.  In addition, Z has had several days of bleeding and that is always freaky.  Z’s doctor reminded me that just a little bit of blood can look like a lot, so I try to remember that when bleeding occurs.  We are a bit worried because his body should be able to get things out on his own and yet he is still unable to accomplish this.  Zack was able to get things out for two days, but it was straight water with no substance and that is not normal either.  We are now back to not stooling without irrigation.  Something is not right about this and we are concerned that surgery to correct that obstruction is looking more likely.  Have I mentioned that we dislike surgery?

One of the theories Z’s doctor has put forth is that perhaps there is more than one issue going on in that little body.  Perhaps the obstruction is one issue that might need to be fixed surgically and the motility and colonic distention might be another.  That is one of the reasons we are changing just one thing at a time, so that we can keep track of exactly what happens with each drug or each treatment. It takes a bit longer to do things this way and we have already established that I am not a patient person.   However, watching how Zack responds to these things has led us to believe that the more than one theory is most likely true.

I believe that we will continue with the steroids for the next week or two and then see how Zack’s body is responding.  I find myself analyzing every little symptom and sign and willing them to be good things.  I have a personal idea of what I think will happen and Jim and I have discussed different scenarios and outcomes.  The reality is that we just have to wait and see what happens next.  Darn it.  You would think I would have learned patience by now for goodness sake.

So, welcome March!  May you be as good to Zack as February.  Come on steroids, do your thing.  Good luck Dr. O and Dr. D.  We are counting on you to do great things for our guy.  No pressure.

~ Dawn

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:

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

Stomach Virus Round 2

When last I wrote, I believe I said that my mama radar was telling me that Zack was not well.  I was right.

Monday evening Zack had a fever of 101.3.  I was hoping he was getting strep throat or some other easy to treat infection requiring a few doses of antibiotics.  Sure he’d feel bad, but it would be over quickly.  Hey, don’t judge.  It’s my dream.

We gave Zack some Motrin, he went to sleep and his fever went away.  He woke up cool as a cucumber, BUT complaining of the dreaded stomach pain again.  Thinking he might be hungry, or maybe hoping he was hungry, we gave him his breakfast.  He ate a few bites and then he proved that his stomach was indeed hurting and that we should have listened to him more carefully.

Jim and I decided we should probably give Z’s GI doctor a head’s up on the situation after the strange weekend we had been having.  I mopped the floor, Jim cleaned Zack up and we debated on what our next move should be — take him in, wait a while, take him in, wait a while.  We decided, finally, to take a wait and see approach.

Since Jim is in the process of retiring from the Air Force and is enjoying some hard earned vacation time before beginning his new career, he happened to be at home.  I happened to have a lunch date with a friend I met through the hospital.  I had been looking forward to the lunch for some time.  I was trying to decide if I should cancel or go and then I realized the answer was obvious.  I should go.  I mean, how often have I been able to go out when I’ve had a sick baby at home?  Um, NEVER.  Jim’s going to start work again soon and guess what?  If someone is sick, I’ll be home.  Happily, I decided to go out to lunch with my friend, E, and we had a lovely time.

I am even more grateful for that lunch because when I got home Zack was not improving.  He did not want to drink.  His eyes looked bad and HE was telling us to please take him to the hospital to get an IV so he could feel better.  He also wanted us to call his doctor.  After texting his poor doctor again, we decided to take Zack to the ER.  I’m glad Zack’s doctor has such a good bedside manner.  He has always been kind and I’ve never felt I was bothering him.  I always worry I am bothering him, but that is a different story altogether.

You know how this story is going to end, don’t you?  Zack was admitted.  He was dehydrated.  He was vomiting, well, not until the ER gave him apple juice.  At least he waited for all three of the pediatric residents to be in his ER room to throw up.  I thought that was pretty good timing.

Today was spent mostly rehydrating Zack and testing him for various stomach bugs.  At our hospital, and I guess most other hospitals, when you are admitted because of a stomach “bug” you are considered contagious/infectious.  I get it.  Nobody else wants that junk!  So, signs were placed on his doors and people got to don their infection containment gear to see our guy.  I posted these photos on FB, but they tell the story pretty well.




I tried to wait around for Z’s GI to come today, but remember those “other” children I told you about?  They need their mama, too.  At least I like to think they do, so I hurried home to see my Jake-man.  Jim was able to spend some time chatting with our doctor.  He learned a few things that I hope I get right.

First, our doctor is feeling like Eosinophilic Ganglionitis is less likely to be in more of Z’s intestinal track.  It was definitely in the portion they removed during his second surgery, but they aren’t finding evidence of eosinophils in his blood work.  This is very promising and a pretty big relief.  Of course, we have to have Zack undergo the endoscopy to rule it out.  He has to be well to do the endoscopy.  He now has a cough.  You see where this is leading.  Make your own conclusions.

Second, it could be possible that Zack has an overgrowth of bacteria in his intestines causing some of these symptoms.  There are ways to check, but they are invasive, so we may consider an antibiotic course to see if it improves without doing the invasive things.  I think this part is mostly right, but I’m also sure that it isn’t totally right.  If you are a medical person, please forgive me.  I’ve had 2 hours of sleep and even if I had slept all night I’d probably get it wrong!

Third, it is possible that Zack has a little kink in his intestines causing some little obstructions that his body works through.  A new to us doctor we had not met before, but who is a member of the GI team, threw that out there.  I’ll probably have more questions about this….

Fourth, Zack is going to be ok — eventually.  I mean, even if he has to keep his ileostomy forever, he is going to be ok.  People can and do live without their colons.  It wouldn’t be how we would chose for Zack to live, but it can be done.  It is hard to look at the big picture when you are in the middle of yuck, but it was nice to hear him say this.  This new doctor also extended us grace by saying that whether we brought Z in when we did or the day before it really would not have mattered.  They would have done the same things and not to get upset with one another if we disagree on the timing.  Gasp!  Jim and I disagree?  Never.  Or rarely.  In that moment when your child is unwell and you are trying to balance not bugging your doctor unnecessarily while at the same time trying not to freak out because you know something is not right, you’ll probably make a good decision.


And now I’m done.  Almost.  Zack is still in the hospital.  It’s Jim’s night to stay.  They are advancing his diet tonight and if Zack can eat and do well, he will probably get to come home tomorrow.  We still don’t have all the answers, but we are working on them.  Jim and I are super grateful for all the doctors and nurses who help our son.  Let’s hope this time we make it more than 10 days between hospitalizations.  If not, at least we know the doctors are working hard to figure Zack out and that is such a great comfort!

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.


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.


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.


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!