Surgery #10 Update – Home

We are home.  The end.

Just kidding.  I am serious about being home though.

Everything I wrote in the last update was true.  Everything that happened in the OR was different from what anyone expected.  When last I updated on the Zachary saga, surgery and GI thought that Zack’s stomach mucosa had prolapsed.  The plan was to take Z to the OR as an add-on late in the day on Friday.

Both GI and surgery planned to work together to figure out how to handle the situation.  The GI team would perform the endoscopy to look into Zack’s belly.  From there, three scenarios were given.  One idea was to get the prolapse to reduce (go back inside) and be done.  The next was to move the g-tube to a new site and be done.  The third was to add-on to moving the g-tube by doing an exploratory laparoscopy to see if the surgeon could tell why Zack keeps intermittently obstructing.  We were prepared for all three scenarios, but hoping for the easiest one.

Zack was admitted early Friday morning so that he could get ready on the ward instead of in the Ambulatory Procedure Unit (APU).  The APU is a bay style holding area before you go into the pre-op holding area.  This place freaks Zack out and as he is anxious enough about medical stuff.  Being able to be in his own room is just better for the entire hospital.  No, seriously, it’s true…  Since he was being added to the OR schedule, that meant lots of time just waiting around.  This is how Jim and Zack felt about that.
Zack was not happy because the PICC team could not get a vein for his IV.  They decided his body was too cold.  He was wrapped in blankets with eight hot packs tucked inside.  He was definitely warm, but the PICC team was delayed and he was super warm by the time they returned 2.5 hours later.

When they finally took him back, Zack did a really good job of remaining calm.  He was able to remain in his room while he received his versed and wheeled down while he was loopy.  That made taking him back the best experience we have had in years.

The surgery and GI teams scoped him and found an area of “schmutz” (a technical term I assume) on the stomach wall that they were able to clean up.  I guess this was where the g-tube had been rubbing.  When they went to reduce the prolapse they discovered that it was not stomach tissue at all.  It was a keloid.  I read this description of keloids in an article from

A keloid, sometimes referred to as a keloid scar, is a tough heaped-up scar that rises quite abruptly above the rest of the skin. It usually has a smooth top and a pink or purple color.

The doctors came into our room to tell us they had good news and bad news.  I did not like that!  They told us about the keloid and how it was an easy fix – the good news.  For the life of me, I could not figure out how there could possibly be a down side to that!  The surgeon said that the bad news was that the way they had to fix it was probably going to be something that Zack would not like.  In Dawn Speak, he cut out the area in a big circle shape, then had to cinch the skin closed, apply some ACell wound healing “paper” over it (cool stuff, you should check it out), suture 4 plastic bumper thingy’s (no idea what they are called) to Zack’s skin temporarily and place his g-tube on these.  Got it?

This is a new surgeon to Zack.  The surgeon Zack has had for the last 5 years is leaving the military, sadly.  We have known his new surgeon for some time and have heard great things about him.  However, whenever you work with a new medical team, it takes some time to learn how they work and for them to get to know you.  One thing about Zack is that lots of things that should hurt a lot do not (intestinal things) and things that should not hurt do (skinned knees).

Anyway, Zack does not seemed phased by this new configuration of g-tube hardware.  It only needs to stay in place for 14 days, yay!  However, for those 14 days he is not allowed to participate in PE, recess, karate, PT, ride his bike, run, jump, you know…have fun.  He has only asked for Tylenol a few times and seems to be walking around just fine.  Our biggest issue, so far, is that the wound and tube are covered in Tegaderm with a little hole cut out for the feeds to attach.  The Tegaderm is like a plastic sheet covering the g-tube to protect it.  We like that, however, to attach the tube to the g-tube, you have to actually grasp part of it that is under the plastic.  This makes attaching the tube quite an event as Zack stomach is sensitive to being pushed on at the moment.

Another issue we had at the hospital is that anesthesia caused Zack to be nauseated for the first time ever.  He was sick in the PACU.  He got some Zofran and was sick again on the ward.  The next morning he woke as happy as could be, except that he was asking the surgical resident and nursing staff for sodium.  They did not give him any.  Shortly after that, he started to say his head was hurting, took off his glasses, turned off the TV and asked me to close the blinds.  Then he started telling me that he needed his stomach vented because the IV fluids were filling his stomach too full.  We called the nurse and when she asked him how he felt his said, “Not awesome.”

Zack was given some Zofran and IV Tylenol and still did not feel great.  The therapy dogs came to visit and he pet them and went back to bed.  Zack does not stay in the bed unless he feels pretty bad. The surgeon came in and said that we should give him his sodium pills and start his CeraLyte back up, but keep him on just sips of clears.

Another thing that happened yesterday was that the surgeon was able to see Zack go 5 1/2 hours without output and the nursing staff saw his belly distend.  Zack’s GI knows this happens frequently and we know that there is really nothing we can do about it, but it is weird and frustrating.  The surgeon agrees with everyone else that he is obstructing intermittently. We talked about living with this for the past two years and being able to continue doing so since it has not become an emergent issue.  But we were also able to talk about how that keeps us a bit anxious most of the time because we know it can lead to more serious issues.  We left it at that, but at least he is aware and thinking about it now as well.

Happily, after Zack received all that sodium and a had good night’s sleep he woke up back to normal.  He was thrilled to order a pancake for breakfast and noodles for lunch and could not wait to get home.

He got his wish and his best buddy was here waiting to greet him.  Now for mom and dad to get some rest……

Hug your babies!  But not too tightly if they have just had abdominal surgery….

~ Dawn

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

Cincinnati Part IV

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

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

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

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

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


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

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

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



Our Week

We have been home for a little over a week and, for the most part, things are going pretty well.  Shhhhh.  Don’t tell!  Zack looks much better, he has a bit more energy and we are getting the hang of this NG tube feeding thing.

When we left the hospital, we thought the NG tube was to help Zack get nutrition until we got the stricture fixed in Cincinnati.  After talking with the dietitian today, I am generally unclear about the plan.  I know it is a Sunday, but our hospital staff is awesome.  Zack’s dietitian wanted to review how things were going and picked this weekend to talk.  It worked out nicely as it gave us several days to observe Zack and to have a good idea of how things were progressing.

We discussed Zack’s weight.  Initially it was up, but after actually getting some stool out today (finally), it was back down about two pounds.  One of the goals was to get Zack to the first standard deviation on the weight chart by November 1.  I do not think 42 pounds makes that cut because that is about how much he weighed when he was admitted.  On the other hand, we do not know what Zack’s true weight is because he is artifically weighed down with poop. All the things I never knew about stool that now take up space in my brain….

At any rate, the plan is for the dietitian to talk to Zack’s GI doctors and see what they want to do and how long they would like Zack to continue with these feeds.  Jim and I are comfortable waiting until the stricture is fixed in Cincinnati before messing with things.  Zack has considerably less pain with the formula than he did on regular food and we know he is getting good nutrition for the first time in a long time.  We will see what the doctors think tomorrow.

Zack currently has pain at night, but not during the day.  Or, perhaps he does have pain during the day, but is able to be distracted enough not to need pain medicine more than once or twice while awake.  That is way better than before.  At night, however, it stinks.  Last night he was awake at 12:30 crying in pain, again at 3:30, 5:30 and 7:30 when we just gave up and started our day.  The night before he literally did not sleep for more than 20 minutes in a row before waking in pain.  I feel really bad for Zack when that happens and I am not thrilled about it for myself either.  It is hard to be a good mom on so little sleep.

We can hear his stomach making some incredible noises and often wonder what on earth is living in there!  We believe Zack has pain because he is unable to get adequate stool out and it builds up over the week.  It took from last Friday until this morning for Zack to have a decent bowel movement.  That is a long time!  His stomach was pretty large and distended.  Happily, it looks better today, but it is still not close to being flat.

Enough about stool and being tired and feeding tubes.  Some fun things did happen this week.  Zack got to go to school to visit his class.  He had told me that he did not remember what his classroom was like and that his classmates must really miss him. He has only been to school for six days of first grade, so I was anxious for him to be able visit his class.

When the time came to go to school, Zack fussed about being too tired and having a tummy ache.  I told him he had to go anyway and I am so glad we did.  His class was so cute and welcoming.  They had made him some Get Well cards and had all signed a special pumpkin for him.  After a little question and answer time, he was able to walk with them to picture retake day.  Since Zack was in the hospital for the real picture day, I appreciated that!  Zack was also able to see some of his special teachers and his school nurse.  His spirits were high when we left.  Here is a picture of Zack in his classroom with his sweet teacher.  You can see how distended his belly is in this photo.


Later in the week, we celebrated Daddy’s birthday which just happens to be on Halloween.  Zack loves Batman.  Jim and Zack play Wii Lego Batman often and Zack often calls Jim, “Robin”  or “Sidekick”.  My sisters thought it would be awesome for Jim to wear a Robin costume on Halloween and he was a good sport.  Anything for his boys.  Check it out.


 Batman and Robin


Jim and Jake tried to jazz Z’s mustang up to look like the Batmobile.  It was a valiant effort.  The Batmobile after cruising the neighborhood.  It was starting to fall apart.  I wish I had a picture of how cool it looked at the beginning of the night.

IMG_3418 IMG_3419

I promised Jim’s office and my sisters that I would post pictures.  You are all very welcome.  I think you get the idea of how incredibly awesome they looked.

Surprisingly, Zack did not even care that he did not get to eat any Halloween candy.  He actually has not complained much at all about not eating.  That is a topic for another day.  Many of our neighbors were so sweet and had special non-candy treats for Zack.  He has been having lots of fun with all the glow sticks and stickers and silly string.  Thank you to all who thought of him this Halloween!

Today I am gearing up for another week of single parenting around here.  I am thankful that we seem to be in a decent holding pattern at the moment and am looking forward to uneventful days until Jim gets back home.  I am also thankful that our new cleaning lady will be starting soon.  Maybe I will actually get a handle on the craziness that has exploded around here….if Zack actually gets some sleep…and if the amount of laundry decreases…Even if those things do not happen, I’ll still be one lucky mama.

~ Dawn




Oh Thursday, we meet again.  Last Thursday Zachary was discharged from Walter Reed after 7 days of being hospitalized. The week before on Thursday, Zack was being discharged from Walter Reed.  Today, you guessed it…Zack was discharged from Walter Reed.  I see a pattern here and I would very much like to break the pattern.  I feel good about it this time, maybe…

I have a hard time telling a story with just a few words.  It’s a problem.  I’ll try and do my best this time.  I can’t promise it will work, only time will tell.

When last we met, Zack was home and doing well.  He was happy and energetic and went to school and was like a real boy again. We had a good run.  Sunday morning Zachary woke up with a distended tummy.  Jim and I measured his stomach and took a wait and see approach.  Zack did not want breakfast, but did want to go to church. After church he asked to eat at Panera Bread.  And then he sat on the sofa.

The doctors sent us home trained in draining Zack’s ostomy for just this situation.  See this tube?


Yep.  We get to stick that puppy into our child’s abdomen and watch stuff come out.  I am not a fan, but Zack feels so much better when we do it and that makes it easier.  Jim drained Z on Sunday at 5 p.m.  At 2 a.m. we heard groaning.  I’m sure you can guess where this is leading.  Zack’s stomach was distending quickly and at 3:45 we drained him again.  He felt better, but we made a mess in the draining process and had to change bedding, pajamas, have a sponge bath, etc.  It took a long time to get back to bed.  In the morning, he still felt sick and I kept him home from school.  Sigh.

I texted his doctor.  He said I needed to get Z into the surgeon at his next available appointment.  That appointment wasn’t until the next day, but after sleeping on the sofa all day, Z’s ostomy suddenly began draining.  He felt better.  I sent him to PT.  He was quiet, but OK.

Being a good mom, I sent him to school in the morning.  He asked for breakfast, but didn’t really eat.  He wanted to go to school.  He had missed so much already.  The school said they would call if he felt bad.  They didn’t call.

When I picked him up for this doctor appointment and saw him walking down the hall I knew…this is not good.  After signing him out of school, he asked to be carried.  In the car, he asked to go to 3 West (the inpatient pediatric ward at Walter Reed).  I was very happy we were headed to see his surgeon at this point.

At the surgeon’s office Zack was not able to be drained.  I mean, the doctor tried, but nothing would drain.  The contents were sludgy, thick and generally abnormal. Guess what he said?  “I’m really sorry, but Zack needs to spend the night on the ward tonight. I need to think about this and figure out what is going on.”



Our GI team felt that Z had a mechanical obstruction.  The surgery team did not feel this was the case.  Two CT scans and several x-ray’s later no definitive answer could be found.  I appreciate that our surgeon did not want to operate without a clear cause.  He reminded us that Zack’s body is unique and that he did not want to do anything unless he was sure he could fix the problem.

In the meantime, the contrast from the CT scan pushed the obstruction open and Zack started out-putting (my made up word)at a rapid rate.  Until the next morning…when he obstructed again for 10 hours.  An NPO (nothing by mouth) sign went up so that Zack would be ready for surgery in the morning if necessary.  Late last night he started out-putting like crazy again.  Yay and super frustrating all at the same time.

Yay, we get to avoid surgery for now.  Frustrating because we do not know what is happening, exactly.  The latest theory is that Zack has adhesions in his abdomen that are causing a loop of bowel to pop out of place and obstruct.  Large amounts of fluids seem to pop it back into place and open it back up.  Or something like that.  I have no idea really, but I’m at least mostly right.

Here is the issue.  The only way to fix that is surgically.  It will not be a little surgery.  Zack’s body does not do well with surgery as evidenced this past summer.  We do not like surgery and would like to avoid it for as long as possible.  Plus, going in to fix scar tissue creates more scar tissue and nobody can guarantee it will work.  Further, we have to have another surgery to reattach his colon in 18 months or so.  See the problem?

The GI team and the surgery team have agreed to try a liquid only diet until Tuesday.  On Tuesday we will have more x-rays and blood work and see how things are going.

That is pretty much where we stand.  Yesterday after talking with our surgeon, I was fine.  After talking with the GI team I was fine. They had not yet limited Z’s food intake and actually said Z could have a pancake.  I tried to order one and the kitchen would not answer.  I went to the nurses station and they got through right away.  I tried to order and the kitchen said I was too late for pancakes (it was still 5 minutes before breakfast ended and I had been on hold for over 5 minutes).  The night before they forgot Z’s Gatorade.   THIS is what did me in…Code Purple!  Code Purple!   Penrod Lady is crackin’ up!

I started crying over a pancake.  Not just tearing up, sobbing.  It was pretty embarrassing, to say the least, but really not at all about the pancake.  I was just so frustrated.  I had been praying for clear answers and it was obvious that was not happening.  I was tired, my head hurt, I hadn’t showered, I was wearing my dirty clothes from the day before because Jim had not yet arrived and suddenly I was d.o.n.e., stick a fork in me, DONE.

Now that we have been home for a few hours I feel a little better.  As always, things could be worse.  I don’t really like that saying because sometimes what is happening right now still stinks.  However, I can definitely see that this is not the worst thing that could be happening.

All of our doctors have said that they encourage us to get second opinions, that Zack is a unique case.  The surgeon has been calling his colleagues at different hospitals.  Our GI team has recommended a few places to us.  But that leads me back to my initial frustration.  There is no best answer.  AND when Zack starts eating again, I’m afraid he’ll obstruct again.  It feels like a vicious circle.

Happily, I have a sane husband who tries to help keep me grounded.  He reminds me that Zack is home and happy right now.  He reminds me that we have a plan, that we have avoided a major surgery (for now), and that Z is being closely monitored.  I’m hoping that after a few good nights of sleep, some healthy food, some exercise and a chance to actually talk to Jim without Zack listening, we will be able to formulate a plan to bring to the doctors on Tuesday.

And now you are all caught up. Still wordy, but I tried. I’ll leave you with Zack’s hospital stay in pictures taken by the Z-man himself. They are blurry, but from his perspective and kinda fun.




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

Cautiously Optimistic

What a difference 36 hours can make.  Here is a picture of Z’s face yesterday:

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Do you see any spunk or joy in that face?  Do you see any color in that face?  Nope. Me either.  Yesterday was easily one of the hardest days yet.  Each day in the PICU brought a new challenge, but we were getting better.  Each day they told us we would be going back to the ward the next day.  Friday was a rough day with pain management.  I thought it seemed like Z’s tummy was distending a bit, but I tend to lean toward doom and gloom.  I figured I was imagining things.  Friday night was not fun.  He was asking for more pain meds almost as soon as he got a new dose.  By Saturday morning, everyone saw the distention.  Nobody liked the distention.  X-rays were taken.  Distention was seen.  Predictions were made.

The doctors felt that Z might have another ileus or another obstruction or an infection or the beginnings of an abscess.  He was taken back off liquids.  There was talk of reinserting the dreaded NG tube.  His surgeon, who was in Colorado, called to talk to us as well.  To say we were discouraged would be an understatement, but I can’t think of any other descriptive words that would fit better.  Our “replacement” surgeon said that they were taking things very seriously and that they would get a handle on things.  In the meantime, we were to walk Z as often as we could.

You may think going for a walk would be easy.  You would be wrong.  Zack’s stomach was in a lot of pain.  The first walk involved lots of crying and pain and he made it 5 steps out and then Jim carried him around the PICU ward, 5 more steps back to bed and then needed more pain meds.  The doctors decided it was time to go on a low and continuous dose of Dilaudid with a PCA button (Patient-controlled analgesia).  Jim kept telling Zack that the more he walked, the sooner he could come home.  We kept telling him how brave he was and how strong he was and how proud we were.  It seemed as though he was beginning to feel better by the end of the day.  Another x-ray confirmed the distention was subsiding.  It also showed a matchbox car…it seems his bed was not completely cleared before the x-ray was taken.  I’d love to have a copy of that!

It was a long day and Zack fell asleep at 7:00.  It was Jim’s turn to spend the night and he thought it was going to be great.  Sadly, Z woke up every two hours overnight but woke bright and chipper.  All of the testing the doctors did the previous day came back negative.  Zack’s fever was gone.  He was able to walk all the way to the nurses station (12 steps?) and back to his bed without complaint. The combination of continuous Dilaudid, subsiding distention and prayer made all the difference.  In addition, Zack’s morning labs showed a decrease in white blood cells and stabilizing numbers in other areas.  After a call to the ward to see if they could handle Z’s extra meds and challenges, the decision was made to release him back to the ward!  Yipee!  After 5 1/2 days in the PICU we are back to the regular pediatric ward!

Did I mention how much we love our nurses here?  They made such a fuss over Zack’s return.

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He was so excited to be back.  He has been a chatty little boy and much more like himself.  The difference is incredible!  We’ve been walking in the ward, playing in the playroom a bit and writing thank you notes.

Getting ready to walk in my new Superman cape my brother Jake gave me.  I am pretty strong and brave.

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Check me out!

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When I get tired, my ride is right there to take me back to my room.

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Another exciting development tonight…we got rid of Zack’s second IV port in his left hand.  Slowly shedding equipment and medicines.  It’s pretty awesome.

Now that we are back on the ward, we still have a ways to go.  The doctors have all said that in order to go home Zack has to be able to walk, eat, drink and take medicine orally.  We are well on our way to walking.  Still not allowed to eat or drink.  Tomorrow we will be able to introduce very limited liquids.  Since we had such a problem with distention after introducing small amounts of gatorade, we will be going extremely slow this time.  We don’t know what that will look like, but it will take a couple of days before we are eating anything.  Then, or maybe at the same time, we have to wean off Dilaudid and get onto oral pain meds.

Jim and I are hesitant to guess when we will be coming home.  It seems like we get our hopes up and then have a set back.  However, today was a good day.  Zack smiled.  Zack walked.  Zack played.  We will count our blessings and give thanks for that!  Thank you for your prayers and well wishes.


Please Pray For Us

I have some words to describe how I feel right now.  Tired.  Scared.  Sad.  Done.

However, I have other words that help me, too.  God.  Jesus. Faith.  Prayer.

Today even though I feel the first set of words, I’m choosing to focus on the second set of words.  It’s the only thing that brings me peace.

Zack’s stomach has distended again.  An x-ray has confirmed dilated small intestine loop bowels again.  We are not leaving the PICU.  People are scrambling to figure out what this means.  Some options are another ileus, another obstruction, an infection.  None of these words makes me happy.

It will probably be a bit before I can post again.  Just wanted to ask for prayer for my family, the doctors and most especially for Zack.


Holding Steady

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

Come on…how cute is he?

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

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

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

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

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

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

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



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

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

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

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

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

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

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