Fun Things

Last week was a crazy fun and busy week.  It started off with Zack getting his PICC line out!  Zack’s doctor really only likes to leave them in for 30 days.  Zack’s was in for 5 months.  I am not complaining at all because according to our awesome neighbor who helped him during the blizzard, the PICC line helped to save his life.

Zack had gotten so attached to it that we had to slowly introduce the idea of getting it out.  As I mentioned in my last post, Zack was afraid of life without his PICC because he was worried that he would get sick again and thought that he would have to be poked way too much.  In the end, the lure of swimming, karate, recess and taking baths again won out.  Zack is most happy about having a line free arm at night.  He says it is much easier to sleep now.  For him….because he is still waking up at night….I’m not bitter…..

Another highlight of our week was the Mother/Son Dance at Zack’s school.  Zack’s original plan was to take me on a date for dinner, but the lure of Domino’s pizza won out and we had a picnic on the family room floor. He was a gentleman and made sure to tell me I looked very pretty.  He also led me onto the dance floor for every slow song and never once stepped on my toes.  Look out ladies!

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Zack had so much fun running around with his friends and being a dancing machine that, for the first time in months, his pain pose returned.

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While his stoma was pretty big and ugly, it did not prolapse.  Zack’s belly hurt for the next two days and he actually sat quietly and took a nap.  Monday morning had me a bit concerned when I found him curled up in the bath saying his pain was yellow, but he had a good day at school and was totally back to normal by Tuesday.

On Saturday, Zack had the privilege of helping the Nathan Chris Baker Foundation with their first ever Great 5K.  Zack and our family manned the 1/2 way point water station.

When I say our family, I mean everyone who lives in the DC area.  Mom, Dad, big brother Jake, his Grandma, two of his Aunts and two cousins.  We could not have done it without their help.  We were also helped by my running group, Flying Feet, which donated the cups and coolers.

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Zack did a good job helping to fill cups and cheering for all of the runners.  “Go Out.  Be Great!”  It was the cheer that kept on going, for every single runner.  I was very proud of Zack and his determination to help support this event.  He did an awesome job giving back to this foundation that has become very dear to us.

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Zack and Tate the Great.

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Zack and his cousin, Ronnie, after the race.

The last noteworthy thing that happened this past week is that Zack’s hearing is within normal limits for conversation.  With his history of hearing issues and current struggles in school, his Developmental Pediatrician wanted us to revisit his hearing and have another check-up.  The audiologist said his right eardrum could have done something better, but since he was hearing conversations well it was pretty much a non-issue. Therefore, I have no idea what the issue was as it has already been dumped from my brain.

As you can see, the world of Zack is looking pretty good at the moment.  We have passed the 5 months since his last surgery mark.  We are coming up on 4 months without an admission.  PICC line is out.  Sodium is detectable and even pretty great.  We have not been this stable for the past three years!  I have to say, we could totally get used to this!!

Hug your babies!

~ Dawn

 

 

Just A Normal Kid

Today is Monday.  Every Monday we head to the hospital so that Zack can have labs drawn and work on some other things.  We leave our house at 5:45 which is brutal for Zack and for me.  At our last visit, Zack’s sodium levels were doing so well that we were allowed to miss a week.  We still had to drive in last week for another appointment, but we got a week off of labs.

This week both Zack’s doctor and main nurse were out which meant our routine was off.  We usually arrive and take his urine sample to the lab in a STAT bag so that by the time he finishes his first appointment those results are back.  Today the lab said they could not find his urine.  Interesting.  Zack produced another sample and we headed down to the lab to see what had happened to the first sample.  Because Zack’s regular nurse was out, the orders for his labs were not in the computer.  The technician who received it could not find the orders, so he placed the sample in the refrigerator. That would not have been bad but, unfortunately, he forgot to tell the other people in the lab it was there.

Two and a half hours later, the results were in and showed his urine sodium was low again. The actual number was 11.  Below 10 is undetectable and what we are trying to avoid.  That meant Zack got to have another blood draw.  Not many of the nurses in the clinic do PICC-line blood draws, but one of our favorite nurses does.  That made Zack (and me) pretty happy.  Zack also sweet talked her into changing his PICC dressing since he had been waiting so long and did not want to waste his precious after school time getting it done at home with his home nurse.

Because his level was down we “get” to go back again next week.  It is not too terrible, though.  We enjoy seeing all of our friends at the hospital.  Zack likes giving all of his nurses hugs and I like talking to them and learning all about their lives.

After all of the delays today, Zack only made it to the last hour of school.  He was not too disappointed because that hour included music class and PE.  Zack loves PE and is so happy that he is allowed to participate once again.

Zack has been dreaming of the day when we would finally allow him to participate in “real” sports.  Last summer he had tennis lessons but missed a LOT because he had surgery unexpectedly.  Zack has had swim lessons but had to stop due to prolapsing and surgery.  Do you see a theme?

Last week his good friend asked him if he would like to go to Buddy Day at his karate school.  We knew there would not be any physical contact involved, so we figured his PICC-line and stoma would be safe. Since we knew it would be safer than running around the neighborhood like a maniac, Jim and I decided to let him try it out.

Zack was grinning ear-to-ear the entire forty minutes of class. He LOVED it!  Who cares that he had trouble staying focused and stood on his head?  He never had the chance to play T-ball or soccer and everyone knows that kids spend plenty of time doing that or picking flowers or looking at the clouds during those sports.  Who cares that he had trouble moving his body the correct way?  He was so excited to be learning karate.  While I do not have the words to capture his enthusiasm, I do have pictures – taken through a glass window on my blurry phone.

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A glimpse of Zack’s smile!

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I think they were working on their reflexes.

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While we do not know if we will actually sign Zack up for karate, tonight was awesome. Zack thinks having a uniform would be cool.  (He was disappointed when he learned he did not need one for tennis.)  We still need to run it by his doctor and talk to the school to see how comfortable they would be having a child with a PICC-line, an ostomy, and a g-tube in class or if it would even be possible.  We know there is no contact or sparring at the lower belts but even so…we need to give it more thought.

Even if Zack does not join karate YET, watching him be a participate in a sport was fun. Seeing him participate in a normal childhood activity was exciting.  His smile was contagious and he was so happy.  I am looking forward to more days like this!

~ 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

Surgery #9 – I’ll Be Home For Christmas…

Ah….the ever-changing plans of Mr. Zack Penrod.  After planning to be gone for Christmas, packing all of our gifts, arranging hotels and wrapping our minds around celebrating in a new place, we are back home.  I have to say, there really is no place like home.  Our beds are cozier, the food is better, we have more space and we can lounge around all day in our pajamas (well, we could…). 

Zack has been feeling OK since his discharge.  He did not feel great on our ride home.  He looked sick and his stomach was hurting.  When we stopped for lunch, he asked Jim to carry him and he barely touched his food.  It was his first day off of pain medicine and fluids so this is not really surprising.  We may also have forgotten to pack Tylenol….not that we would have done that after all this time.  Sigh.  Poor Zack.

When we got home, Zack’s friends were outside and gave him a cheerful welcome home.  Zack managed to stay outside for about two minutes before declaring he was cold and tired – it was 62 degrees.  He has been sleeping sitting up (his belly pain position) since we got home. Luckily for Z, we actually have pain medicine at home AND give it to him when necessary.

Yesterday was a little better.  We finally made it to Sports Clips for a much-needed haircut.  In between turning pale and not being hungry, he had several bursts of energy that were so amazing his brothers declared themselves in time-out to escape the craziness.

We are working on figuring out this new mucous fistula.  Unfortunately, it sits at the bottom of his abdominal incision right where the waistband of his pants hits his belly.  His surgeon said she put it there to cut down on the prolapsing risk.  Another thing that might prolapse?  Awesome.

Our biggest issue at the moment is keeping up with his crazy output.  We have to start giving him bolus fluid doses through his g-tube to keep up with his losses.  He currently has his dehydrated look going on, but we feel confident we can handle it here at home.

We also had our first visit from Zack’s new Home Care nurse.  His PICC line dressing needs to be changed once a week.  Since it is a sterile procedure, I am not qualified to do it by myself – thank goodness.  I am sure I could learn.  I have been told that some families do it themselves.  I am just grateful that someone else is doing it for him as I do not feel comfortable messing with a line that ends right near his heart.  I would much rather have someone take over that responsibility!

Now that we are home, this family of mine actually expects our Christmas traditions to happen.  You know, the food part.  Trying to pull together all of the things we do for Christmas would be pretty hard, so we took a poll and picked some of our favorite things.  Today we will make two Christmas goodies, have our normal Christmas Eve fondue before church and homemade cinnamon rolls for breakfast on Christmas morning…or candy from our stockings. Come on!  You know this happens!

Our awesome next door neighbors have invited us to share their Christmas dinner with them.  I am not sure who is more grateful for the invitation, me or my guys.  Thank goodness for friends who see our weary faces and extend kindness.

Do not let our lack of energy fool you, though.  The Penrod family is counting our blessings this Christmas.  We have been overwhelmed by the outpouring of love so many have shown us. I get teary even thinking about it.  Santa coming to visit Zack on the fire truck, classmates cheering for Zack, friends giving Zack encouragement, invitations to dinner, packages and cards arriving at the hospital, doctors and nurses working hard to get us home for Christmas, all of these blessings….we are so thankful.

So while Zack may not back to normal, he is incredibly happy to be home and counting the hours until the “jolly old guy” arrives.  He wants to be allowed to sing tonight at church because, “Ms. Judy is counting on me to be there to sing to all the people about baby Jesus!”  And that, my friends, is the real joy of Christmas.  The birth of Jesus.  I am so thankful that we are home and that Zack will get to sing tonight and share his joy with others.  May we all have such childlike faith!

Merry Christmas!

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~ Dawn

 

Surgery #9

Today was a long day.  Zack had to check-in this morning at 6:30 for surgery at 8;00.  I am very happy to say Zack was very brave and very strong and very cooperative.  It is a big deal and we are very proud of him.

When we met with Zack’s surgeon this morning she told us that she had been thinking about her plan and wanted to make a few changes.  I will tell you about a few, but I want to wait to tell you about all of them to see how things go over the next few days.

Zack’s surgery was called a rectosigmoidectomy transanal approach.  The name is a little misleading (to me) because he already had his sigmoid colon removed.  The doctor decided instead of opening Zack’s belly, she was going to go in through his bottom.  Doesn’t that sound fun?  We were told that going through the bottom would be less invasive, less painful and that he would recover faster.

During the surgery, Zack’s old anastomosis was revised.  The surgeon said his staples were scattered all over the place and that she could see why he was complaining that they hurt.  We do not know why the staples did not hold like they were supposed to, but she spent a long time removing them.  We even got some to keep as a souvenir.  Some people collect coins, I guess we collect intestinal staples.  Zack’s surgeon took out about five inches of his colon and then stitched the two ends together to form his new anastomosis.

Zack’s stoma had started prolapsing again, so the plan was to revise it and tack it down during this surgery.  When Z’s surgeon got in there she found that it was still partially tacked down and had a bit of an odd twist.  Given those two things, she decided that it was best just to leave it alone.  She then made Zack’s mucous fistula at the bottom of his scar line.  A mucous fistula is an opening in his belly where part of his colon is brought up to the surface so we can access it when needed.  That was interesting to me because his previous mucous fistulas were next to his ileostomy and pouched in his bag.  We will see how this one works.

Zack’s g-tube was changed out and his granulation tissue was removed again.  His new button is a lower profile one that Z’s surgeon prefers more than his Mic-Key button. At the very end of the surgery, Zack had a PICC line placed.  He will need to have his blood drawn weekly for a bit and his veins are starting to revolt.  I do not know how long he will have it, possibly until his next surgery.

We met with the surgeon when she was done in the OR and discussed many things.  I will write about them another day when my eyeballs are not stinging and Zack feels better.  We have a tentative plan that I actually understand and that Jim and I are comfortable with.

Some friends were waiting with us in the waiting room and could tell I was getting anxious.  I know just how long it usually takes from when we meet with the surgeon until we are called back to see Zack.  Today it was taking an exceptionally long time and making me a bit nervous.  It turns out that they were having a hard time controlling Zack’s pain.  He had Dilaudid, Morphine, Valium and Robaxin and was still not comfortable.  He had/has a PCA and was pushing it every few minutes.  The pain team finally came and worked their magic, but it still took about five hours for Zack to start feeling a bit better.  He is now sleeping well. We will see how he does in a few minutes when I try to sleep.

There you have it.  That is all I have.  I am sure that when I read this tomorrow I will wish I had spent more time thinking about what I wrote, but my eyelids are done.  I leave you tonight with a picture of Zack’s teachers.  They all got together to send Zack some love.  It made me smile!

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Oh!  One last thing…for those of you who wanted the link to ecards for Zack:

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

Zack is in location A, the Burnet Campus, room 439.

Hug your babies!

~ Dawn

Almost Out Of Here!

We are close.  So close.  Looks like Zack will be released on Saturday!  The doctors are being extra careful before sending him home and I appreciate that.  During rounds in the PICU, the staff started by saying this is hospital day _______ PICU day ________.  Well, today is hospital day 26 for us.  When we go home on Saturday, Zack will have been here for 4 weeks.  That’s a long time!

This is Zack on the way to the hospital on June 2, 2013

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Here is a picture of Zack today.

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For the past few days, the doctors have been working to get Zack off of IV pain medicines and onto oral doses.  He is now down to just Tylenol and Motrin with one narcotic as needed.  We try not to give that unless absolutely necessary.  

The doctors are also weaning him off of TPN (IV nutrition) and hoping he begins to eat more.  He isn’t very hungry, mostly due to the IV nutrition he receives and also because he hasn’t eaten in so long.  Yesterday he had his first taste of “real food” when he had a pancake for breakfast.  Today for lunch he had a few bites of a turkey sandwich. Slow and steady…we will go home on PediaSure to supplement as needed.

Otherwise, Zack is doing great.  His energy is returning.  He can climb into and out of the bed on his own again.  He likes going to the playroom to play xbox with Jim.  Today Zack made crafts with the Social Worker and had a great time playing with sand.

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Yesterday our church came and did a mini-VBS with Zack.  He was so excited.  He had been learning all the songs before his surgery because he wanted to sing and dance on stage.  He was sad he was going to miss VBS, so our wonderful Children’s Director came with some other wonderful people (including big brother) and sang songs, brought crafts and talked about a Bible story.  I think they blessed more than Zack as the fun could be heard through our door.

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Again, I apologize for the blurry pictures.  My iphone camera stinks.  I wanted to use this picture because you can see the joy and happiness on Zack’s face.

One more day and then we head home.  I am still in shock.  It feels similar to going home after our first child was born.  We were so excited for him to be born and for him to come home, but then reality hit.  Luckily for us, we are well prepared this time!  We have had lots of training here at the hospital, we will have a home health nurse check in on us once a week for the first month and we will be visiting the doctor frequently.  Zack will come home with his PICC Line for a few days so that when we go back next week they can draw blood and make sure all is well at home before removing it.  Even so, I’m sure we will be a little cautious the first few days while we settle in….I am just so excited that we are almost there!

Dawn

Getting Closer To Home

What a week!

That’s all I could think of to say about that.

Seriously though, it was a crazy week.  We have been blessed to have a great PICU team here.  We thought we would be in the PICU for only one night.  It’s Friday now and we are still here, BUT if all goes well tonight we could be back on the ward tomorrow.  Keeping our fingers crossed!

Yesterday Zack needed to have a blood transfusion.  It was a strange feeling for me.  I didn’t really expect that.  Strange to think about Zack receiving someone else’s blood, but also thankful that someone donated blood.  The process of the transfusion was interesting as well.  The blood is triple checked.  First the nurses pick up the blood from the blood bank where both Zack’s blood type and the bag of blood are checked by two people to make sure it matches.  Then the blood is walked to the ward where it is checked by two more nurses to make sure it all matches and once more before the blood starts to be administered.  When the transfusion begins, the nurse starts the blood slowly and then checks vitals every 5 minutes for 15 minutes and then every 30 minutes after that to make sure there are no signs of allergic reactions.  The whole process took 4 hours and was just like any other IV fluids except, well, it was blood….which made it different.

Zack also had a little fever yesterday before the transfusion as well as after, so he had a blood culture done.  As a preventative measure, Zack was started on both Vancomycin and Flagyl in addition to his Zosyn.  These antibiotics were added because Zack was at risk for infection from his surgery, his PICC Line and his catheter.  These people don’t mess around.  He’ll be on the newest two for 48 hours while his blood culture is monitored for infection.  We don’t think he has an infection, but since he is at high risk this is what we do.

Today finds us getting closer to leaving the PICU.  Zack was able to get rid of both his catheter and NG tube today.  In addition, he was allowed to lick a popsicle and have very small sips of Gatorade.  Here’s a first look at his popsicle experience:

Another big thing that happened today was that we started trying to wean Zack from the heavy drugs he’s been taking.  First, we completely stopped giving him the Ketamine.  Next, we successfully went from giving Dilaudid every 2 hours to every 3.  It was tough though and we needed a lot of diversions.  Check out some of the things we did:

A visit from Sgt. Archie the therapy dog.  We like therapy dogs.  Who knew they could come into ICU!

A visit from some clowns.

Look at the hat they gave Zack!

Zack also had the Child Life Specialist come and play for a hour.  They painted sun catchers and made necklaces from beads and other things to keep Zack’s mind off how many more minutes were left until he could have pain medicine.  Yesterday they made a bus shaped piggy bank.  To help Zack feel more in control of all the people who poke his belly, they came up with the idea of making people “pay” Zack for the chance to touch his tummy.

Zack plans to use his money to buy a red convertible Mustang Power Wheels big enough for a 6 year old.  Jim and I think that is a fine idea.  I think he has $2 so far, but I’m pretty sure he has us wrapped around his little finger at the moment.  We aren’t usually such big softies, but I’m pretty sure there will be a red convertible Mustang Power Wheels big enough for a 6 year old in his future.  I’m also pretty sure it will be one of the best things we ever buy.

Looking forward to a great weekend and the real possibility of getting home next week!

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