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.

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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

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!

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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

Some Results

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

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

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

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

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

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

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

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

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

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

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

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A Star Wars fighter.

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

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

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

~ Dawn ..

Zack’s 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!

Thursday

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?

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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.”

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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.

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Hospital Update

We have good news to report, finally!  Zack’s obstruction seems to have resolved on its own today.  Yay!  This morning during rounds, the surgery team was worried that his obstruction was really mechanical, like a kink or twist.  When he was drained, fluid came out immediately upon inserting the big red rubber tube.  They feared there was an obstruction right near Zack’s stoma and so they sent us off to X-ray for another fluoroscopy, but this time it involved drinking barium and following it from beginning to end.  The results were wonderful with no obstruction found.  This means it was a pseudo-obstruction.

The other good news is that his small intestines were much less dilated up top.  There was still distention lower near the stoma, but hey, any shrinkage is good.  While we are over the moon excited about this, we still do not have any answers/reasons as to why it happened in the first place.

That leads us to our next news.  The GI team is going ahead with the endoscopies tomorrow!  Yay!  They will use deep sedation rather than general anesthesia.  Or at least, that is the plan tonight.  Since they will be going in 4 different areas (mouth, both stomas and bottom), our doctor said the procedure will take about an hour and a half to complete.  All areas will be biopsied for signs of eosinophils and who knows what else.  I have no idea how long it takes to get the pathology back, but I’m imagining longer than I want.  Probably at least two weeks.

One of the lessons I have learned in the hospital this time is that when the teams are rounding you learn a lot of information.  Everyone is trying their best to figure out what is wrong, but not everyone knows Zack really well.  As a result, some of the guesses will be wrong.  Sometimes the wrong guesses can freak you out and cause you (me) to spend energy worrying about things that just aren’t going to happen.  Unless you are Jim.  That man never worries.  We should all learn from him!

Every day of our “visit”, Zack was seen by the surgical team.  A young resident would come in, get the story of the night and report to the head resident.  The head resident then comes in to see Zack and reports to the surgeon, who then comes in and gives you his opinion.  Then the pediatric intern comes in, gets the story, reports to the head resident.  The team then comes in with the attending and gives the report.  Next, the GI team comes in, but they round as a team and all come together leading to only one interpretation.

I hope you can see from this example how many different people are talking to us each day.  How many different opinions are given and how much stuff we have to sift through to figure out the real story.  Each person is really trying hard to figure Zack out.  We appreciate all the different sets of doctors trying to help our son.  I just finally learned tonight that I need to just run all the opinions by the doctor I know best to get a reality check.  That way I’ll only freak out about what is truly freak-out-able.  Like my new word?

Zack has been allowed to have gatorade AND chicken broth today.  He’s in heaven.  He would REALLY like to have a pancake.  Maybe after his procedure tomorrow, if all goes well.  We do not know when Zack will come home.  I hoping on Wedenesday or Thursday.  The food introdcution is going very slowly to make sure all is well.  We do not want to go back to the hospital because we came home to soon.  He is still on PPN and we hope that will end soon.  Sadly, he had to have his IV sight moved today.  That was not fun.  It took three tries to get the new sight figured out.  There were lots of tears and 4 people helping to hold him down.  Seriously.

Unfortunately, we still do not have an explanation as to why Zack obstructed.  Not having an answer is not very comforting.  It leads to questions like, will it happen again?  What’s up with his small intestines?  I’m sure the doctors wish they knew the answers just as much as we do.  Each hospitalization leads to more answers though.  We know more now than we did on September 6th when Zack was first admitted.  We have lots of people interested in getting Zack better.  That might just have to be enough for now.

We will update you tomorrow after Zack’s procedure is complete.  It is scheduled to begin at 9:30 a.m.  I’ll leave you with some photos of Zack yesterday.  Some of his aunts and his cousin came bearing gifts.  I’ve also included a blackmail picture of Jim and my sister.  It is beyond words.  Enjoy!

Move over Ben Affleck.  I’m BATMAN!

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There are just so many things I could say about this photo.  I’ll let it speak for itself.

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The Craziness Continues

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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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.

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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!