Surgery 7 Day 3

Yesterday Zack was a long day.  Our usually cheerful boy was extremely crabby.  He was not happy about much and did not want anyone to touch, look or talk to him. That was fun.

The pain team came in and asked how we thought he was doing and what we thought about getting rid of the PCA.  Since Zack had pushed his pain button 24 times in a two-hour time period, we all decided to wait and reassess later in the evening.  Because Zack was not getting much relief from the pain pump, he was given a dose of Valium and then put on oral Oxycodone.  (One should not mistake Oxycodone for Oxycontin..we were given a brief.)  His pain seemed to be a bit better, but not his attitude.

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Zack and his gear yesterday..

Happily, Zack’s stoma started having output yesterday morning.  Whenever you have intestinal surgery you must have output before you can begin to eat.  When you are on steroids you are hungry.  Food is important.  Zack was beyond happy to be able to have some jello and his beloved G2.

As usual, we had some issues keeping his ostomy bag on and he needed to be changed three times. Luckily only one of the changes occurred overnight.  Another happy thing is that our nurse was training a nurse new to the floor, so during the “disaster”  the three of us were able to get that mess cleaned up in about 30 minutes.  It was a pretty substantial mess….

Today Zack’s main goal was to get off his PCA so that he could get down to the playroom for some Batman and Robin Wii.  He told the pain team when they arrived that he did not need anymore pain medicine.  Because they stopped the pain medicine, he was able to come off fluids.  He was also able to lose his catheter.  A few hours later, we were able to stop his feeds until later tonight.  That means at this very moment, Zack is not hooked up to any machines.  That will all change in an hour when he has to go back on his IV for more antibiotics.

Because Zack achieved his goal of getting off his pain pump, he was able to go down to the playroom.  He also had his diet advanced and had pancakes for both breakfast and lunch.  I think he may be living out one of his dreams.

Jim and I have spent our day in training.  We have been trained in g-tube care.  I have to say that it seems pretty easy and we like easy.  We had a refresher course in ostomy care.  That felt a bit like labor.  You forget what you are getting into and then it all comes flooding back…we are still in that phase.

The good news is that Zack is doing extremely well.  We have not yet had a surgery where we able to be discharged earlier that expected, but it looks like that might actually happen this time.  As long as he does not develop any new issues overnight we are planning to be discharged tomorrow.  I am pretty sure the heavens are rejoicing.

Hug your babies!

~ Dawn

 

Surgery #7

Surgery number 7 – Complete.  Whew.  I do not think it matters how many surgeries your child has had, it never gets easier sending them into the OR.

Today we were extremely proud of Zack.  He was awfully brave.  Child LIfe met us before we even walked into Same Day Surgery to be admitted and it was someone Zack had met before.  He was happy to see her and show her some of his new games on the Kindle.  Unlike last time, he walked right in and got vitals without so much as a whimper.  That is progress people.

It appears that Zack has wonky veins and now requires the Vascular Access Team to place his IV.  I guess that means he is a really hard stick.  I know our nurses at Walter Reed already know that.  Today they had special nurses come with an ultra-sound machine to find his veins.  They said many of his veins were too little to hold a good IV. Zack did not care for getting his IV this way.  It might have had something to do with the vein that blew and the blood that was all over his arm.  Maybe.

When it was time to go to the OR Zack got a bit teary.  He said he could not do this again.  He said he was not going to go to that room again.  We finally got him walking towards the OR and he was really starting to have trouble holding it together.  His surgeon, whom he adores, heard him and came out and walked with him.  Zack was brave for her and did not fuss again until we got to the induction room.  Dr. D stayed with us and got her phone out to play games with Zack while the anesthesiology team snuck around and administered their drugs out of Zack’s eyesight.  Once he was asleep, we kissed him and off he went.

During “the walk”, Zack told his doctor about getting Braggin’ Dragons at school.  These are little slips of paper that recognize children for being ready to learn and using good behavior in the halls among other things.  Zack currently has 19 and when he gets to 20 he gets to go out to dinner.  Dr. D told Zack she was going to give him one for good behavior to show his teacher.  She is a woman of her word and a woman of many talents.  He came out of the OR with this on his ostomy bag:

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Because Zack’s colon had not been working, we had to do rectal irrigations each day to get his stool out.  It was a lot of fun and I bet you are jealous that you did not get to participate.  Anyway, we were not able to ever completely empty his colon like this, so the first part of the surgery was spent cleaning out his stool.  I am so glad I am not a colorectal surgeon or a GI.  They earn every dollar of their salary and probably deserve a lot more.

After that, the team placed his g-tube.  I learned today that the initial g-tube has a long tube while the incision heals.  After about four weeks his GI will change that to the little button that is mostly flush to his skin.  I am excited about that for Zack.  Zack also had another procedure that is private, but involved two more incisions that do not feel good.

Finally, it was time for Zack’s fourth and final ileostomy.  Just putting that out there Universe.  Do you hear me?  FINAL ileostomy.  No prolapsing this time.  No obstructions.  I mean it!  Happily, Zack’s surgeon was able to do the whole procedure laparoscopically.  This involved just one small incision in his existing belly button scar and then she was able to revise his old ostomy scar and use it for his new ostomy.  Our boy has a pretty scarred up abdomen, so we appreciate this immensely.

When we met with the surgeon afterwards, she showed us pictures of his colon.  They were not pretty.  His transverse colon was significantly enlarged and floppy taking up a lot of his abdomen.  The descending colon that we were irrigating looked better than the transverse colon, but only because we have been able to keep it decompressed through irrigations.  Even so, it still did not look like a normal, healthy colon.  That made me sad.

The experts here in Cincinnati do not have a good explanation for why Zack’s colon does not work.  They explained again that he acts like he has Hirschprung’s Disease even though he does not.  They said he falls into a small group of kids with dysmotility that they just really do not understand.  They believe his colon works fine until stool is introduced.  I guess someone forgot to tell his colon how to do its job.  I do not understand how that works, but evidently it happens….just not often.

Jim and I have come to terms with the fact that his colon is not going to work and that we may never know the reason why.  Actually, Jim has been at peace with that for some time.  I am still fighting against it, but I am getting worn down.  I told Zack’s surgeon that if his ileostomy fails again, I will be ready to take his colon.  Of course our hope is that his ileostomy will work.  He is due for a break about now.

I was hopeful we were going to have a peaceful night, but then his TAP block wore off. The TAP block is a nerve block in Z’s abdomen. Tonight has been spent trying to get itching under control from the pain meds, getting Zack to actually use his PCA for pain, getting loads of meds and trying to convince Zack all is well.  He is convinced that he will never stop itching.  The nurses have tried Benadryl and Nubain and he is still itching like crazy.  Sleep is overrated…..

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 Before the itching began…..

Some of you have asked about sending Zack ecards.  Here is the link for you.  He is in the Burnet Campus, Location A in room 439.

http://www.cincinnatichildrens.org/patients/resources/ecard/

I wrote most of this a bit earlier.  This night has been particularly long.  It is now 12:40 and our trooper finally fell asleep.  I think I will join him.

Hug your babies!

~ Dawn

 

 

Decision Made

Trying to decide the best surgical option for Zack was a lot harder than we expected. After several days of agonizing deliberation, we have finally come up with a plan AND let the surgeon know our decision…you know…to make it official…and keep us from changing our minds.  There were a lot of arguments for removing Zack’s colon, but in the end we just did not feel comfortable with that decision.  Call me crazy, but we wanted to be 100% sure before removing a vital organ from our child.

Instead, Zack will be spending his Spring Break in the hospital having another ileostomy and getting a g-tube.  I am pretty sure the Easter Bunny knows how to find Cincinnati Children’s Hospital, right?  Ileostomies still frighten us a bit, but this option will allow Zack’s colon time to rest.  We know it might not ever heal or work properly, but it will allow us time to try to figure out exactly what is causing the issue.  At least, that is our dream.  He has already been tested for everything they can think of and a definitive diagnosis has been elusive.  We just felt that we needed a little more time before giving up his colon because once it is gone, it is not going to coming back.

Another reason we chose this option is because Zack’s barium enema showed some sort of obstruction at his anastomosis.  It could be that there really is no obstruction.  It could be that his intestines are so big that his colon has completely shut down and nothing is moving.  That is one theory.  OR perhaps there is something there that everyone is missing.  Maybe?  Doing the ileostomy will allow his surgeon to check out the anastomosis internally and IF there is a physical obstruction of some sort, we can redo that surgery.  Since nobody is entirely sure, we felt it was worth a thorough investigation.

We are a bit concerned about how Zack will react to another ileostomy.  He already says he does not want a g-tube and that he likes his NG tube best.  Crazy child. A g-tube is a little tube place through his abdomen into his stomach.  It will allow him to get his formula that way rather than through his nose.  It is not noticeable through his clothes and seems much safer and easier to deal with than his NG tube.  If that is causing such a strong reaction, I am giddy with excitement and cannot wait to see his face when he learns about his ileostomy  His last ileostomy was loads of fun, so we will have to resort to some creative parenting to sell this one.

Our target date for surgery is the week of Monday, March 30.  Ileostomies are not super hard surgeries.  The anticipated hospitalization is 3-5 days.  One of these days the anticipated hospitalization date will jibe with the actual hospitalization stay.  All I am saying is Zack is due for a complication free stay.  It could happen.  Fingers crossed.

Today Zack received some new rectal irrigation tubes from Cincinnati.  I know you are impressed.  When Zack heard they were here he was so excited.  He says he cannot wait for his irrigation tonight.  We all have dreams.  I guess rectal tubes are Zack’s.  I would like to change the things that excite him to, I don’t know, Disney World or Hershey Park or bunnies.  Something more kid like.

As soon as we have dates, I’ll update again.

BIKE

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 ..

Surgery #6 – Day 11

Today was a good day!  Zack was finally discharged.  It feels a little scary as he still has a few lingering issues, but we are literally right across the street from the hospital.

After a very long night of potassium infusions and pills, Zack’s blood level was finally on the very lowest acceptable number and the doctors called it good.  We got the results at 5:30 a.m., so a really long night.  Zack will continue on oral potassium until Friday when he will have another blood draw.

Zack also had some concerning bleeding this morning.  His surgeon is hopeful that he just irritated the staples, but we are watching closely.  His blood count was a little low, but not as low as it has been in the past with his prolapse.

Even with all of these crazy little things, Zack was more than ready to get out of the hospital.  Today he woke up saying he was getting out of the hospital and that he was ready to leave.  Once his surgeon saw him, we had to get an x-ray to make sure our medicine (laxatives) are working properly, get Z’s PICC line out and load up the car.  It took until 2:30, but we made it.  Zack is a free man/boy/child!

We spent a little bit of time checking out the Ronald McDonald house, but Zack is still pretty tired. In addition, his body is trying to figure out what to do without part of his rectum.  It is hard work learning to use those muscles again and it hurts.  Being close to the bathroom and close to a place to sit when cramps strike is our main concern.  We will not be sight-seeing or venturing far from our room this visit.

Zack was most excited to learn that there is a great game room here.  We can also check out a Wii and bring it to our room.  Heaven is real people.  Of course, your mom has to agree to let you do these things and right now Zack is spending most of this afternoon lounging in the recliner in our room.  Wii can wait for daddy.

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Being in the hospital is always tiring.  This time was no exception. The thought of having to figure out where to go for dinner with my tired boy seemed overwhelming.  When we got here, we learned that dinner is served every single night in the dining room.   We are super thankful that the Ronald McDonald house has volunteers who come in to fix meals for the families each day as well as snack.  Tonight we will be having pizza.  Zack cannot believe his luck!

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We are so thankful to be out of the hospital and looking forward to sleeping all night in our cozy beds.  Thank you for all of your well wishes and prayers.  Things are looking up around here!

~ Dawn

 

Surgery #6 – Day 10

The drama continues…..

OK, that is a little drastic.  Let me take you back to yesterday.  If you will remember with me, Zack was super tired after exerting any energy.  Like extremely tired.  It was starting to bug me and my mama radar did not like it.  The nurses had labs ordered and they came back showing that Zack’s potassium levels were critically low.  I believe normal is above 3.3 mEq/L for kids.  Zack’s level was 2.0.

The staff decided that Zachary needed supplementation to raise his level to a safe number.  They started by giving Zack an oral dose of potassium which raised it to 2.3.  That was not high enough.  Next, Z was put on IV potassium infused over an hour and then an hour later labs were drawn.  It rose to 2.6.  Another round of IV potassium got his level to 3.0.  Yay, but still considered “critical”.  The next dose saw the level drop.  I’m not even kidding.

Currently, Zack is hooked up to the monitors again.  He is getting yet another IV bolus of potassium along with another oral dose.  We have to watch his heart rate closely, but everyone thinks that it will be fine.  The bigger question is why on earth his levels went down.  I know I do not have the answer to that question.   I’ve been searching the great Google, but cannot figure that out.  Hopefully the doctors will have an answer in the morning.

Other than that, Z seems to be improving.  He is eating well.  His energy was up a bit today.  He voiced his frustration of still being in the hospital.  He said it seems like it has been almost a whole week since his surgery!  Tonight he had a mini-meltdown about getting into his hospital bed and having the leads reattached.

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Today we also got a call from the Ronald McDonald house saying they had a room for us.  I was very excited about that and after Z’s surgeon came by to see him, I actually left my child in the hospital and went to check out of the hotel and into the RMH.

I am excited that we got a room because Z is pretty weak.  He is not going to be sight-seeing in Cincinnati and Kentucky when he is discharged,  However, he is still a child and sitting in the hotel with nothing to do would be a major bummer.  The RMH has a playground, playroom, movies, activities and they are all right in the same building as our room.  The biggest bonus of all, there will be other kids.  Zack seems pretty excited about going……hopefully tomorrow….if we can get his potassium squared away.

That’s all I have for you today.  I’m pooped….pun intended.

~ Dawn

Surgery #6 – Day 9

WE HAVE POOP!

Our day started like yesterday with pain and distention.  This time, Zack was saying he needed his doctor and he needed “the tube” to feel better.  He hurt so much he could not walk the hall, so we put him in a wagon.  He cried the entire time, so I finally just put him back in the bed.  When Jim arrived around 9:00,  Zack still looked pretty bad.

After a few hours he began to perk up and we went down to the playroom.  He managed to walk down, but needed his pillow on his belly and his feet up on a chair while playing Wii with his dad.  The surgical fellow came down to check on Z and said we needed to do another rectal irrigation.  We said we wanted to wait for his surgeon to arrive.  Zack has not let anyone near his bottom voluntarily in years, so when he asked for the surgeon, we were going to give him the surgeon.

When everything was set up, Zack was not quite sure about cooperating.  Really, who can blame him?  His surgeon did an excellent job of talking him through his fears and the procedure.  He felt so much better after that, but was extremely tired.  He would have slept for a long time, but it was time to say good-bye to Jim.  Zack was so tired that after he said good-bye he sobbed.  He said he loved his daddy so much and was missing him so much that his heart hurt.  It was sad…

We got Zack into the shower then and warm and cozy in his pajamas and he seemed a little better.  He asked for dinner and ate it all and soon the pain started again.  We now have a pattern.  About five minutes after eating his pain begins.  This time he really started crying and even said he was going to die.  I found that to be a little dramatic, but I kept my opinion to myself.  The nurse came in to help me and said we were going to do another irrigation, but I wanted him to try to use the bathroom first.  To my surprise, it worked!  We even had gas! It was so exciting.  Before you get grossed out, remember that this post is about intestinal surgery to reconnect bowels.  I am going to talk about all things poop related.

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When Zack was done he was completely out of it.  He had to lean on the nurse as I cleaned him up and could not stand on his own.  We carried him into bed and he went straight to sleep.  It was 7 p.m. and Z was out for the night.  The nurse and I discussed how pale he has been after pooping and irrigations and how lethargic.  The nursing staff and resident decided to draw labs just to be safe.  In addition, Z had some blood in his stool.  This could just be normal post op stuff, but it was new tonight.  We are just being super cautious.

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Zack is also going to start laxatives in an hour.  Lucky boy.  He was going to start at four times the adult dose of Senna, but because he stooled on his own he will start at two times the adult dose.  It could be an interesting night….

When we found out that Zack was going to have his reconnection surgery earlier than planned, people asked me if I was excited.  I felt a little bad that I was not excited, but I knew that we were trading one set of issues for a new set.  The good news is that Zack has actually pooped on his own for the first time in a very, very long time.  Things should just keep improving from here, but it will not be a quick process like I once naively thought.  There will be lots of trial and error and it is likely that Zack will need a bowel management routine for many years.

Tonight as I get ready for bed, I have decided to be thankful for today.  I am thankful that it looks like we might get discharged tomorrow afternoon.  I am thankful that Zack has great medical care both here and in Maryland.  I am thankful that Jim made it home to Maryland safely.  I am thankful for friends taking good care of Jake and Rugby and our house.  Last but not least, I am thankful for poop.  It is a wonderful thing.

~ Dawn

Surgery #6 – Day 8

Ahhhh Zachary.  How your body perplexes me/us/doctors.  Last night Zack got to have pancakes for dinner.  He was happy, but still a bit distended.  We had an x-ray.  It showed a possible obstruction.  Z’s surgeon felt it was just trapped air, so he was allowed to have pancakes again for breakfast.  He was so happy.  He ordered butter and two syrups to go along with it and snarfed those bad boys down.

About 15 minutes later he started asking for pain medicine.  The problem was that his IV meds had expired (for lack of better description) and so he had to have oral Tylenol, but it had not yet been 6 hours….which meant he had to wait.  We talked him into going to the play room.  Here is what he looked like there:

day82

I agree, he looks awfully cute.  However, he also looks uncomfortable.  While we were there he started looking pale and getting dizzy.  Daddy had to carry him back upstairs to our floor where the surgeon on call was paged.  This is how he looked then:

day81Yep.  Voluntarily back in bed asking for pain medicine.  Sigh.  His stomach was distended and he was in the pain position.  The surgeon on call came and told us to knock off the food for a while.  He said if he vomited we would have to reinsert the dreaded NG tube.  Happily, that did not happen.

Zack’s actual surgeon came in a little bit later.  I love that his surgeon comes every day.  She told us that when she saw his x-ray last night she was hopeful that the air would pass overnight.  Because it did not move on its own, it was time to help it out.  She said that his body acts like that of a child with Hirschprung’s Disease.  If you have read our blog at all you will know he does NOT have this and has been tested numerous times. Nonetheless, his body acts in all sorts of goofy ways.

This next part may gross you out if you are not into medical or poopy stuff.  Read on at your own risk.  You have been warned.  Zack required rectal irrigation.  This involved putting a tube into his bottom and injecting saline water and pulling it back out.  During this process a lot of air and stool was removed.  Z’s surgeon said that sometimes this procedure will kick start intestines into moving again.  Sometimes kids require a few more irrigations.  Time will tell for Zack.

When the irrigation was done, Zack started giggling.  He kept saying, “I feel SO much better!”  He even kissed his surgeon.  For real.  He felt so great we went back to the playroom.  He was still acting a little out of it then and was a bit dizzy and required being carried back to our room.

After a two hour nap, he woke happy and wanting to walk down to the main cafeteria for pizza.  PIZZA people.  Crazy.  His surgeon said it was fine, so he was disconnected from IV fluids and off we went.  He needed to stop and sit a few times, but did great on the walk.  He had 1/2 a piece of pizza and some G2 Gatorade.  While we were waiting for the pizza, he was acting so sleepy.  As we began to walk back, he needed to sit.  After that, he walked about 20 more steps and needed to be carried.  He was spent.

Time will tell if his intestines fill back up with air or if they are able to move on their own.  He is doing much better now, but certainly not ready to leave yet.  Maybe tomorrow evening?  Jim leaves to fly home tomorrow night.  We feel comfortable with him doing that as Z is improving and getting closer to being well enough to be discharged.  Here is a picture of him now:

day83

He is still lying down, but this time on the sofa.  He is smiling and laughing at his movie.  We have already discussed how great this night will be…..hopefully.  We are grateful to our surgeon.  She is on this and really knows how to talk to Zack in a way that helps him understand what is happening and to be calm, even when rectal irrigation is involved.  Believe me, this is huge.

Now we wait.  That is fun.  But, we are hopeful we are over the hard stuff now.  More updates tomorrow!

~ Dawn

 

 

Surgery #6 – Days 6-7

Yesterday was September 11.  It was a day for remembering.  Although Zack had a pretty good day, I did not feel right posting.  In addition to the anniversary of 9-11, we also received sad news that Zack’s sweet teacher’s husband died, another dear friend’s father was moved to hospice and news about another Air Force family with a sick child. I figured today would be a better day to post.

Speaking of better days, when last I wrote, Zachary had been made NPO or nothing by mouth again.  I am happy to report that we are back to clears today!  So far he has had 2 oz of Jello and 2 oz of G2 (less sugar Gatorade) and is doing well.  The plan is to stay on clears at a slow pace today and then talk about advancing his diet and stopping IV fluids tomorrow and maybe being discharged on Sunday.  Fingers crossed.

Yesterday we had some fun visitors.  We had a visitor from our friends church in Kentucky stop by to say hello.  It is always fun to make new friends.  We also had a visit from our high school friend and my old neighbor in Munich, Susie!  We had not yet met her husband, Matt, so it was great to meet him.  We spent about 3 hours talking about all of our friends from Munich and catching up.  It was a great afternoon.

susieMatt and Susie spreading some cheer.

After they left, Zack got the all clear to head to the playroom.  You have no idea what a big deal this is to Zack.  He was so excited!  Here he is playing his beloved Wii Batman II Lego game with Daddy.  You can see his tummy is still a bit distended in this photo.
tummy

My tummy might hurt, but I still want to play!

I mentioned in an earlier post that Cincinnati Children’s is at capacity at the moment and there are not enough beds for all the sick kids around here.  Because of the virus going around, there are restrictions on visitors, hand washing and all kinds of things.  A magician was supposed to come by the playroom and put on a show, but it was cancelled because of the restrictions.  Instead, these two guys came and entertained the whopping three kids in the playroom.  Yep.  Only three.

twirlingplates

Jim and Zack got to twirl plates on their fingers.  They were pretty good at it, too!

juggle

What are you going to do to me?  I am not sure about this.

juggle2Zack got to be the “helper” for the juggling act.  It was the first time he stood without holding on to a hand or an object so far.  He thought it was pretty cool.  After that we walked back to his room with only one stop for a rest.

That brings us back to today.  I started this post earlier today.  It is now time for dinner.  Zack has done so well on clears and with his output that his surgeon said he could try pancakes for dinner.  Pancakes!  He still has a little distention, but lots of output (good) and no pain (good). Z just got an x-ray to see if the distention could be from air in his stomach or if it is something else. All other signs are that he is healing really well.

The unofficial word on the street is that if Z does well with his pancakes that he will come off fluids tomorrow and then get to eat more real food.  If that goes well, we might be discharged on Sunday or Monday.  I know I said that above, but it was unofficially confirmed by the doctor who really said they do not like to give a date.  It reminds me of our good friends on 3W at Walter Reed.  They do not like to say the name of past patients because when they do, they say they are admitted a day or two later.  I find all the superstition interesting….

Tonight Zack and Jim will be building a Lego City Helicopter Transporter.  It is pretty cool.  I love watching them work together.  I’ll update again tomorrow after we see how the real food experiment goes.  Until then…Hug your babies!

dzlego

~ Dawn