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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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

Things Are Looking Up!

There he is…..my guy.  I wanted to say he was happy, but he is a bit sore after his procedure.  Look at his face.  He isn’t unhappy, I guess he is just “uncomfortable”.  If you saw what they did to his intestines it would make you uncomfortable as well.

The GI Team actually did the roto-rooter deal.  They took a spaghetti scope and inserted it into Zack’s ostomy.  The camera allowed them to inspect his small intestines.  They advanced the camera slowly and about 18 cm into the small intestines they found a spot where a turn in the intestines was constricted. The explanation I understood was that the intestines are so dilated that they are pressing on this turn and sort of flattening the turn and thus not allowing the fluid to flow freely past.  Got it?  Whew.

The surgeon then took over and “invented” a stent from an NG tube that had holes in it.  They then inserted the NG tube in with the scope past the blockage up to about 35 cm.  Then they turned on the suction to make sure it worked and it did.  The hope is that gravity will pull the fluid out of his intestines into that tube and out into a bag outside of his ostomy bag, under his bed.  Wow.  That sounds confusing.  Let me add a few pictures to help me describe this crazy deal.  If you are squeamish, skip right on over these few photos:

Z’s ostomy bag with tube coming out of the lower portion:

By the way, this is an adult collection bag to accomodate the amount of tubing coming from the site.

Next photo is the bag coming from his body to the edge of the bed:

Finally, the collection bag under his bed:

Not all of the fluid will be collected by this tube.  It is hoped that the remaining fluid will follow the tube and come out into the ostomy collection bag attached to his body.  We hope to keep the tube in for 24-48 hours.  The doctors think Z’s body will probably push the tube out over time.  We also hope the swelling of the intestines will diminish allowing the constricted turn to open up and drain on its own.

Now the if’s…

1.  If the drain stays in and drains properly, we will disconnect it in 24-48 hours and see if his body can work on its own.  If so, yay…we can go home early next week.

2.  If the drain stays in and drains properly and is disconnected and does NOT work properly, we will go back to draining his ostomy manually.  Jim and I will be taught how to do this until his body can do it on its own.  Joy.  BUT we could still go home :).

3.  If the drain does not drain properly, Jim and I will be taught to drain it and can go home early next week if everything else remains the same.  If his body does not begin to work, we will continue draining the ostomy until his body is healed enough to perform another surgery in the near future.

As you can see, most of these options include us coming home sometime next week.  I am afraid to type this…..I hope it is really true…..

Another exciting thing for Z is that his NG tube was removed.  Most of the fluid was making its way down the intestines away from the NG tube, we weren’t getting much waste from that.  Zack has been so brave and strong through all of this and rarely cries.  Having his NG tube messed with sets him over the edge.  Having it out was a big deal for him and that makes me happy.  If all goes well tonight, Zack might get to have a drink tomorrow.  He’s already planned it out and has decided his first drink will be apple juice.  Sounds wonderful.

Zack would like to post a picture of his crayons.  So here you are:

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Overall, a very good day indeed.  We needed that!

Dawn

Holding Steady

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

Come on…how cute is he?

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

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

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

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

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

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

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

Dawn

Update

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

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

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

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

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

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

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

Counting My Blessings

It’s been one of those days.  It started off so well.  Actually, Sunday was pretty darn good as well.  Zack had a good night’s sleep.  No doctors had to be called overnight.  Sunday found him smiling and joking and with more spunk.  We walked the hall three whole times, sat in a chair for two hours and made it the entire day without Dilaudid.  Last night was a little bit rough, but that’s probably because mama was back.  In my defense, the night nurse called the surgeon because his NG tube was having a mechanical issue which in turn made Z’s tummy hurt like crazy.

Back to today.  Zack woke up happy.  The surgeon didn’t have to drain anything, the NG tube was working again.  Zack walked the hall and then the Child Life Specialist came and played with Zack and they painted a picture for his cousin.  Shhhhh. It’s a secret.

After that, we had visitors and played.  About 1:00 things started to go downhill.  Zack began asking for Dilaudid.  Yes, he knows the name and he knows when he wants it.  We gave him one dose and he fell asleep for about 2 hours.  Jim arrived soon after he woke up and then Zack began crying….not because his dad arrived!  It was soon evident that this was some big pain.  Z’s main surgeon was paged and actually happened to be right by the ward.  He came with two of his residents while Zack was still in a lot of pain.  Usually by the time they arrive he has calmed back down.

His surgeon drained him through his stoma while one of the residents worked on the NG tube.  Between the 3 of them a liter of fluid was collected.  We have been trying to keep from giving Zack Dilaudid. The surgeon wants him weaned as do we.  Today the surgeon said we needed to give him a dose.

That brings us to right now.  We were getting ready for bed when Z began asking for pain medicine again.  We started with the IV Tylenol at 8.  It’s a pretty busy time then with shift change and medicines being switched, vitals being taken and other important things.  Zack was complaining of pain the whole time.  At 9:00 I took him for one last walk.  He made it half way down the hall and needed his spiffy car.  While I drove him around he kept sliding down the seat because his tummy hurt.  He also rode with his head completely on the steering wheel because he was so wiped out.

By 10:00 we decided to let him have more Dilaudid.  I expected he’d go right to sleep.  Turns out the medicine did nothing for the pain.  He started crying and the staff decided to call the Surgeon of the Day.  While we were waiting for him to arrive, Zack started crying that this was an emergency and to get the doctor.  I have to tell you, I don’t like nights in the hospital.  The doctor finally arrived and Z asked him to PLEASE drain his tummy.  It makes me sad that my 6 year old feels so bad that he begs the doctor to drain his stomach through his stoma.

Zack’s intestines were drained, NG tube fixed and plans made to check in again.  His main surgeon has said that if he is not better in the morning, Zack will have a CT Scan to check for the possibility of an abscess.

You may be wondering what this has to do with counting my blessings.  When things go all kerflooey, I’ve got to stop and count my blessings.  Let me count them for you:

1.  Zack is not in the PICU.

2.  Zack is not the sickest child on the ward.  I’m not happy the other children are in worse shape, just happy that Zack is doing better.

3.  Zack’s stomach looks better.

4.  We have a wonderful surgeon and surgery team.

5.  Our nurses have been amazing.

6.  Last week, the doctor in charge of the ward was a GI doctor and he watched Z like crazy.

7.  Our neighbors have been helping us with our dog and feeding our middle child.

8.  Our church has been bringing us meals and visiting us at the hospital.

9.  I have great friends who check on me daily.

10.  My mom and sisters have been coming and sitting with Z so Jim and I can get some food and leave the building for a moment.

11.  LOTS of people are praying for Zack.

When I list those things out, our current situation doesn’t seem so overwhelming.  Add in a little stress relief in the form of exercise, an amazing husband and kids and our faith in God and things start to feel manageable.  Most importantly, I remember to take each moment as it comes, keep my eyes on today and when all else fails, eat some chocolate.

Dawn

Zack’s Update — Surgery #1

I apologize.  I had great plans.  I would bring my laptop to the hospital and write all about Zack’s surgery and keep you all updated….and then life happened.  I also wanted to be witty and fun in my posts, but this time I’ll just be relaying information.  It’s really all I can do right now.

It all started out as we expected.  Zack was admitted to Bethesda Naval Hospital or Walter Reed National Military Medical Center as it is now called.  We did the clean out.  Over 3.7 liters of GoLightly later and nothing.  For over 9 hours.  Seriously.  I had been second guessing myself about the surgery.  Yes, he needed it.  It really was our only option. Still, that nagging anxiety about sending your baby into surgery kept me wanting another option.  Z holding 3.7 liters of that stuff inside his body was confirmation that there was indeed no other way. I’ll spare you all the messy details, but some came out overnight.  The rest (we thought) was cleaned out during surgery.  If you are a parent getting ready to go through this surgery and want all the details, I’ll be happy to share.  Just leave me a message….

The morning of surgery was a flurry of activity and waiting.  We saw the surgery residents, the surgeon, the ostomy nurse, the pediatric residents and doctor.  Zack got in his ride and off we went to the OR.

Since Z had an IV placed during the cleanout phase, the anesthesiologist gave him some versed and got him loopy before taking him away.  Oh my heart.  That was incredibly hard.  Knowing that this surgery was important, but also that it was going to mean changing Zack’s body, I had such a flood of emotions and just wanted the day to be done already.  Why does time seem to stand still in times like that?

Soon the surgeon came to get us.  The surgery went well.  Zack’s colon was decompressed first.  The surgery was able to be done laparoscopically.  When everything was done, the surgeon decided he thought the stoma looked a little “tight”, so he did some reconstruction to make it just right.  He felt good about it and we felt enormous relief that surgery was over.

Once Z got back to his room, he slept most of the day.  He had pain meds on board and a local at the surgery site and seemed to feel great.

That night, he started having a lot of pain.  We were up most of the night.  We found out that the orders for the pain meds were not relayed correctly and that Z was only getting 1/2 the dose of morphine he was supposed to and instead of IV Tylenol and Zofran, they were giving it to him orally.  That lead to vomiting.  It was a long night.

On Tuesday morning our surgeon arrived and was not impressed by the events of the night.  He assured us that would not happen again and we knew he meant it and has been true to his word.  All meds are under control and all staff have been great working with Zack.  Zachary had visitors on Tuesday and his cousin, Ronnie, came and played Minecraft with Z.  Z even sat in a chair for a time.  We were so happy that things were looking so good.

About 9 p.m. all that changed.  Zachary began to vomit again and was in a lot of pain.  His pain medication was not touching it and his stomach was distending and he was not urinating.  Our nurse was wonderful.  She really took charge and got the Surgeon of the Day up here, x-rays taken, etc.  In the end, we had to wait for the morning for our surgeon to hear that Zachary had a bowel obstruction and ileus, complications from surgery.  We’ve been told that developing an ileus is not uncommon.  Ileus is a type of bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small intestines.  Narcotics can also slow the return of intestinal function and morphine is a narcotic.

On Wednesday the doctors decided it was time to figure out if the obstruction at the surgery site was due to swelling or if the actual procedure might need to be redone.  They also decided that they needed to place an NG tube so that they could suction Zack’s stomach.  His stomach was very distended causing lots of pain and they wanted to decompress it and remove fluid.  Further, they wanted to put in a PICC Line to start Z on TPN or Total Parental Nutrition.  These are nutrients placed into the blood stream to help people who are not able to eat.  He had not eaten since Saturday and was vomiting and losing fluid through the NG tube.  Unfortunately, the Pediatric Sedation Unit was completely booked and he had to wait until Thursday for the PICC Line placement.  The good news on Wednesday was that they were able to switch Zack’s pain medicine from Morphine to Toradol.  It is a drug used to reduce moderate to severe pain, but you can only receive 6 doses total and then they would have to switch drugs.

Wednesday night was much of the same with pain, vomiting, low urine output.  On this night, however, a pediatric resident was reading his file and realized that he was super dehydrated.  In addition, when he stood up to try and go to the bathroom a stream of blood came out of his ostomy.  People really started moving then….more xrays, more surgeon of the day activity, more everything.  In the middle of the night when people start hurrying around your child, it isn’t the greatest feeling.  I had been staying overnight while Jim went home to be with Jake.  Each night seemed to be one crisis after another.  Our surgeon had said that he expected that night to be a good one, so I gave him some ribbing about that in the morning.  Zack and I were now running on about 10 hours of sleep total since Sunday.

Thursday morning Zack was able to have the PICC Line placed.  I had never even heard of a PICC Line before.  Basically, it is a central line, IV, that is thread from the upper arm to just above his heart.  Zack’s has two “heads” which allows him to receive both fluids and nutrition.  To place it, we had to go the Pediatric Sedation Unit where he was again under anesthesia.  Jim and I were allowed to stay and watch and it was really amazing.  A little lady who looked a bit like Edna Mode from The Incredibles came in and took control.  She watched Zack’s veins through ultrasound to pick the best one, and moved with great precision and speed and got that puppy in quickly.

Just before  the PICC Line was placed, Zack’s surgeon was able to insert a tube into his stoma and retrieve over a liter of fluid from his intestines.  Besides the relief of getting that fluid out of his body, the surgeon was also happy that the stoma, though not working, was made properly and felt confident that no other surgery would be necessary. The NG tube produced and ostomy produced about 1.5 liters of fluid and some other bodily fluids added a bit more for about 3 liters that day.  That’s a lot of stuff coming out of one little body!  While he was still under anesthesia, we also gave him a good scrubbing.  Being clean does a body good.  He also got some balloons from his Sunday School teacher.

Friday brought more news of the intestines just not cooperating.  X-ray showed distended small bowel loops with lots of air.  The NG tube stuck to Zack’s stomach wall and had to be flushed and repositioned.  The doctor switched Zack to Dilaudid for pain control and over the course of the day decided to do 2 hour doses to help keep ahead of the pain.  That night Zack began breathing funny and lifting his arms as if he couldn’t breathe.  Pulse/oxygen levels were good, so everyone decided that it was the abdominal distention leaving Zack feeling breathless.  In addition, the output from the NG tube was going down and it was decided the tube had attached itself against the side of his stomach.  Several x-rays and repositioning led to a better drainage flow.  All the repositioning led to vomiting.  The kid can’t catch a break.

That leads us to today.  Today Zack was pretty tired.  The surgeon explained that his small bowel was now very distended.  If you can remember way back to the beginning of this blog, we had the ileostomy because his large intestine was so distended, but his small bowel was fine.  The ostomy is open, but not draining because nothing is moving in his small intestine.  Why is the question.  The doctors say it is a waiting game now.  Because Zack also has motility issues, it is really hard to say when the intestines will begin to work again.  They cautioned us to be ready to be in the hospital for a long time. They said one patient ended up being there for 40 days.   I’m pretty sure my heart dropped with that statement.

I’ve tried to include a lot of details for those who may be having this surgery soon.  Not everyone gets these complications or they wouldn’t be complications.  Zack’s body has always reacted a bit different than the usual child to medical procedures, so this may just be a Zack thing.

My husband and I are exhausted.  I came home for the first time to sleep tonight.  It feels strange without my boy.  He’s in good hands with his daddy though, so I’m off to try and get some sleep.

Dawn

Get Ready To Be Schooled!

All right people.  Time to learn something new.  Exercise your brain.  Come on, you know you want to learn new and interesting things about your colon!  Today we are talking about ileosomies.  Just remember, I’m a mom, not a doctor.  I do like to pretend I’m a doctor late at night as I diagnose all my children’s illnesses, but I digress…

An Ileostomy is a surgical procedure that can be done a couple of different ways.  The least invasive way is laparoscopically through a few small insicions in the abdomen.  It is our hope that this will be how it happens for Zack.  The other way is an open abdomen procedure and the recovery can be a little longer.

During the surgery, the surgeon will pull a loop of Zack’s small intestine out through the right side of his abdomen.  He will then cut the loop in half, not all the way, and then basically turn it inside out and make a cuff which will be stitched to his skin.  This is called a stoma and looks red like the inside of your cheek.  One direction of the loop will allow stool from the small intestine to empty into a collection bag.  The other direction of the loop will be used to allow medical things to happen in the future.  It could be used to flush the large intestine, it could be used for a colonoscopy/manometry in about 18 months to see how things are progressing and probably other things I’m not aware of yet. It is called an ileostomy because they are making the ostomy (hole in the abdomen) using the last part of the small intestine or ileum.  When the surgeon uses the large intestine (colon) it is called a colostomy.  See how smart you are now?

Zack’s loop ileostomy’s main purpose is to divert his stool away from his large intestine.  Because he has such a severe case of constipation, everything is very distended.  Because it is so distended it does not have the strength to move stool along properly and needs a rest. Did you know the intestines can shrink back to normal?  How cool is that!  Our hope is that after a rest of 18 months, Zack’s large intestine will be able to function normally again and the ileostomy can be reversed.

Both the GI doctor and surgeon have cautioned us that Zack’s Sigmoid Colon is severely enlarged and could be past the point of healing.  We won’t know that for sure until it has been given time to rest.  The Sigmoid Colon is the last part of the large intestine before your rectum and has a bit of an S-shape.  If it doesn’t shrink down, it may have to be removed. Not to worry, though, you can have your Sigmoid Colon removed and still have normal bowel function.  Who knew?

To help explain all of this to our 6 year old, we found an ostomy doll.  Really, I don’t make this stuff up.  There is a company called Shadow Buddies that makes dolls for all sorts of medical conditions, pretty cool.  Check out this photo:

This is Zack’s Ostomy Buddy.  He could care less about this doll.  He says dolls are for girls.  I think it is cute and will come in handy when we get to the hospital.  It came with a wafer and bag to place over the stoma as well.  I’ll write about that later.  Zack’s doll also has a hospital bracelet, coming home outfit and discharge papers.  So cute..maybe the doll is more for me?

While all of this is a bit scary to us, our doctors assure us that ileostomies are easy to perform.  The surgery itself should take about an hour.  They do it all the time.  Of course, we think it is a pretty big deal as it is happening to our baby.  While it may be an easy operation for them, they are still cutting our child’s intestines and he will be stooling in a bag.  Not so easy for us.

Zack’s GI doctor tells us that Z will be able to all the things he currently does without limitations – once he heals of course.  He can go swimming, play ball, run, jump, basically anything he wants to do.  Our biggest concerns will be keeping him well hydrated and skin care.

In addition, Zack should feel a LOT better.  Can you imagine how you would feel with such a distended belly?  He doesn’t know he feels bad, because that is how he always feels.  We are excited to get this surgery behind us.  We are thankful for the doctors God has provided, because I cannot even begin to tell you how wonderful they are….they are probably ready for Zack to be healed as well because we/I ask a lot of questions.

Now you know all about ileostomies.  If you have read this far, congratulations.  Now go outside and enjoy this beautiful day.  Hug your kids and give thanks for their health.

Dawn