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!

photo

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

Merry Christmas!

Merry Christmas!

I hope that you are all home with your families today enjoying this Christmas Day. Last year at this time, Zack was a pretty sick guy.  We are thankful to have him home and FULL of energy and excitement this year.  While we are thankful to have him feeling better this year, we are mindful of our friends who are not home.  We are praying for our friend Logan and his family today. Logan is spending his Christmas in the hospital fighting Neuroblastoma.  We hope next Christmas will find him healthy and strong.  Until then, we are praying for him every day.

Zack has been doing well.  It feels amazing to write that!  He has color in his cheeks, energy in his body and a smile on his face.  Since having his NG tube placed, he has gained about 4 pounds.  It could be more than that because nobody really knows how much of his pre-procedure weight was really poop.  Seriously.  We are still having some lingering pain and stooling issues which continue to frustrate us, but we are working on a plan to address that with Z’s doctor.

In other news, Zack is thrilled to be back in school.  He just completed 2 1/2 weeks of being back for 1/2 of the day.  He loves going to school and riding the bus.  He says his favorite part of his school day is math.  Hmmmm.  Interesting.  I’ll take that answer.  I would have guessed P.E. or recess.  What do I know?

On this Christmas Day, I thought I would take a moment to update you on life. Sometimes life throws things your way that you never expected.  Being a parent should have clued me in….things are going to be hard.  Jim and I are no different than any other family.  I don’t know why I would expect to escape hard times.

I purposefully do not write much about our other kids.  They are mostly grown and do not need their “stuff” broadcast.  I did ask permission to write this much, however, and they graciously agreed.  This year has brought some pretty hard things into our lives and some days have been really tough.  Just because Zack has some serious health issues doesn’t mean our other kids don’t have serious problems as well.  Our boys will try to handle things themselves not wanting to burden us.  We can be tired and worried about Zack and not as in tune with our boys’ problems as we should be.  I think it is a common problem for families with a child who requires lots of special care.  While I do not plan to expand on that any more than this, I mention it today on Christmas because people often say to me, “I do not know how you do it!”

That statement is meant to be kind and uplifting, of course, but it assumes that I am somehow stronger than others.  When your child is sick, you do what you have to do.  There is no other way.  Our family is no different than any other family.  Our struggles  with Zack are more visible, while others are more private.

Even though my circumstances may not be what I would choose, my answer to that statement is simple.  Faith.  Without faith, life would be overwhelming to me.  Sometimes it still is, but then I remember whose I am and that my strength does not come from myself.  I love Carrie Underwood’s song, “Something in the Water.”   I think it summarizes how I feel pretty well.  AND the dancing is totally amazing, which is an added bonus.  Come on, dancing in water?  So cool.

Today we celebrate Christmas.  The birth of Jesus.  He is the reason I can be strong when life is hard.  Christmas is a great reminder to me:

“And now I’m changed

And now I’m stronger”

I am not going through life on my own.  I am not strong on my own.  I am strong because of Him.  Some days I get it really wrong.  Some days I am a real grinch and not at all the person I want to be.  Some days my life does not reflect my faith, but guess what?  I’m not perfect, just loved right where I am….and when I remember that I really am changed and I really can be stronger.  Hopefully that is what people see in me…. most of the time.

I know that this time in my life will pass and hopefully, when all is said and done, I will be stronger, my family will be stronger and our faith will be stronger.  That will be a beautiful story.

Merry Christmas!

Penrod 2014 (1)

~ Dawn

Our Week

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

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

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

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

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

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

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

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

zschool

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

zandrobin

 Batman and Robin

IMG_3416

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

IMG_3418 IMG_3419

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

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

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

~ Dawn

 

 

Home For Now

When we checked into Walter Reed last Wednesday, Zack could not walk from the parking garage into the building.  He was so weak that he rode in a wheelchair to see his doctor and then to be admitted onto the ward.  He was so pale that his feet were a freaky version of white and his tummy hurt all of the time.  I am happy to report that after his “tune-up” our boy has regained some of his spunk.  I like spunk.

zandrugs

Zack’s iron levels are improving.  There are several different markers for how your body uses iron.  I do not know what they all mean, but I do know that the number that shows how hard his body is working on making new red blood cells is up.  That is good.  He has pink lips again, his ears almost have some color again and his feet are less freaky looking.  All good things.  Even better, his energy level is returning.  When we left the hospital yesterday, Zack walked on his own all the way to the car.  That makes me pretty happy and Zack noticed it as well.  In fact, Zack commented that his doctors must be crying happy tears because he feels so much better.  Amen.

One of the issues Zack has struggled with his entire life is eating well.  Through the years, we have done a pretty good job of getting enough calories into our guy.  For a few years he even tracked along the 50% curve on the growth chart.  Sadly, for the past few years he has been dropping on the chart and is currently below the 5th%.  Since surgery, Zack has had a lot of pain with eating as well and this has led to long periods of Z not eating.  The decision to give Zack and NG tube was bit hard emotionally for me and for Jim. How will Zack feel about having a tube in his nose?  Is there anything else that might happen that we do not know about?  If there is something else, do we really want to know?  We are getting a little tired here…But then we regrouped.  Just needed a moment to process.

Obviously, we wanted to do what was best for Zack.  His doctor explained that his poor nutrition could be contributing to his belly pain.  Poor nutrition hinders healing, energy levels and a host of other things.  Zack was just not getting better, so we knew we needed to have the NG tube placed.  Surprisingly, after the initial yuck of placing the tube, Zack has done really well with it.  His belly pain has dropped significantly as well.  He is currently receiving all of his calories through the pump, but is allowed a few bites of graham crackers and jello and to drink his precious G2 (lower sugar Gatorade).  Beginning next week, we will introduce full liquids as well.  I am unclear about how long Zack will be on his feeding tube, but I am thrilled he is doing well with it.

As Zack and I drove home, Jim was home getting Zack’s new Kangaroo Joey feeding pump set up.  Sadly, the guy who dropped it off did not know how it worked, so we spent a bit of time figuring it out.  That was a bit frustrating as he was supposed to be able to explain it all to us.  Happily, it is much like the one we used in the hospital.  It took a little doing, but after calling and talking to our nurses, talking to customer service and searching Google, we were up and running.  Zack loves that he has the option of wearing his pump in a backpack so that he can do all the fun things he likes to do and not be tied to an IV pole.  It is actually pretty handy.

zbackpack

 

Z getting ready to check out the neighborhood for the first time in 10 days.

zbackpack2

 Wearing his snazzy backpack.

So now what?  Well, Zack seems to be having an issue getting stool out.  Over the past two weeks it has become evident that he is going several days without any output and then has a day where he becomes very uncomfortable and distended and then it all bursts forth.  Real life people, real life…When this happens he is in considerable pain, vomits and bleeds from his bottom.  We know that this is most likely from his stricture at the anastomosis (reattachment) site between his rectum and descending colon and that the stricture needs to be fixed.

Obviously, we would like to have this problem addressed as soon as possible.  After much discussion between our doctors here and Z’s surgeon in Cincinnati, we have decided to head back to Ohio in the near future.  To fix the stricture, Zack will go to the OR where he will be scoped before the procedure to see how the anastomosis (reattachment) looks.  His surgeon will then dilate the stricture with some sort of balloon.  Once that is done, she will scope him again to make sure that there are no complications and that is it.  It is not surgery, but it is performed in the OR.  Usually, this procedure is a same day procedure, but because Zack’s body has been difficult lately, his surgeon wants to admit him overnight just for observation.

Zack’s surgeon will be out-of-town next week.  Jim has a business trip the following week, so we are trying to decide if he will cancel his trip or if we can wait a few days longer to travel to Cincinnati.  We should have it all planned out by the beginning of the week and look forward to solving yet another issue for our guy.

One lingering concern is whether or not Zack is having motility issues as well.  When we went to Cincinnati for motility testing, all the tests came back normal.  That was before he was reattached.  Now that his intestinal tract is put back together, there is some question as to whether or not his motility is actually normal. It does not feel as though it is…but that is a problem for another day.

Today we are happy because Zack is home to help celebrate his big brother’s birthday.  He was most upset yesterday when his tummy was not feeling well.  He was crying because he needed to get home to his big brother for his birthday.  He told everyone he was feeling awesome, even though he clearly was not, because he did NOT want to stay another moment in the hospital.  He got his wish and is so excited to be home to celebrate Jake’s birthday.   I think he is most looking forward to giving birthday spankings and presents.  He’s all about the presents.

Thank you to everyone who helped us over the last week and a half.  We appreciate all of your visits, meals and calls.  Thank you to everyone who helped shuttle Jake to and fro and to our awesome friends who put together a birthday surprise for Jake at his Youth Group overnighter.  My heart was happy to know that Jake’s birthday was extra special.  You guys make me smile.

IMG_7502.JPG (1)

 

Um.  Yum!  Chocolate cake!

IMG_7497.JPG

 

My 17-year-old.  Wow.

When we get more information about our trip to Cincinnati, we will update our blog.  Until then, I am hoping for a few uneventful days.  It is about time.

Hug your babies!

~ Dawn

 

Zachary’s Tune Up

Remember my last post?  You know, the one where I talked all about Zack having a good day?  Do you remember how I wrote about Zack eating a turkey sandwich and loving it, but then having some pain?  Yes, well….it did not end well.

Zwr8This is Zack on Monday afternoon.  This is Zack Monday evening and Tuesday morning and Tuesday evening.  I bet you are getting the idea.  To make things more fun there was vomiting and blood.  Oh, did I forget to mention that Daddy was in Germany?  We know how to do fun around here.

Happily, Zack’s GI and I talked and decided it was time to admit Zack for a tune-up.  After 5 1/2 weeks of not feeling well, we were getting worn down by the daily pain and the bleeding and the lethargy.  I was actually really relieved that Zack was going back to the hospital and hoped that we would be able to figure out what was going on with our guy.

We learned that Zack’s iron levels were pretty low, so he received an iron infusion of Dextran.  We were told this drug would help improve his iron levels in a few days and his lips are actually almost pink again.

As I have mentioned before, Zack’s nutritional status….well…it was/is stinky.  Zack had an NG tube inserted so that he could receive enteral feedings.  That made him sad, but I think he has become resigned to the fact that he needs the tube to feel better.

Today Zack had a scope under sedation to see if the doctors could figure out why he keeps bleeding.  I told his doctors that I was praying that they would find something and I was not lying.  It has been frustrating watching Zack in pain for so long.  It has been hard to see him like that and to know something is wrong, but not to know what “it” is or how to make him feel better.  I found myself feeling anxious that Zack would have the scope and the doctors would not find the source of the blood.

Happily, they found something.  I realize that sounds a bit crazy, but honestly, I was so relieved that there was a reason for some of Zack’s symptoms.  I have not had time to research or ask questions or anything, so here is the very little bit I know.  The site of Zack’s rectal anastomosis (reattachment) has developed a stricture.  In English, his reattachment site has narrowed.  Instead of being a big circular pipe, it has now constricted and become a little pipe.  This makes getting stool through problematic.  It is also irritated and bleeds easily.

The part I do not know is what the heck we will do about it.  Zack’s doctors here and his surgeon in Cincinnati will come up with a plan soon.  I do know that treatment will most likely involve dilation of the area with balloons of some sort.  This procedure will require sedation, but most likely not surgery.

Zachary is not handling sedation well at the moment.  He gets very upset and starts hitting, kicking, biting and screaming.  It is very overwhelming to him and to me and it makes me very sad.  I asked him about his behavior after his procedure today and he told me that the sleepy juice makes him feel funny and he does not like it.  I cannot say that I blame him, but his behavior is out-of-control and Jim and I are struggling with how to help him.

Speaking of Jim, Zack’s day was made ten thousand times better when his sidekick came straight from the plane to see his boy.  Zack informed me that I should head home because “Robin” was back.  Zack is Batman after all.  I was worried “Robin” might be exhausted by the time change and plane ride, but he reassured me he was ready to spend time with his boy.

I hurried home in the pouring rain….or crawled home at 40 mph…you decide.  When I got home, Jake Penrod had the entire house cleaned.  My floors were vacuumed, the dishes were done and the yard was mowed.  I mean, come on!  How great is that?  So, thank you, Jake.  You made your tired mama proud.

One last thing…tonight is my first night home since last Wednesday.  My computer was not able to find the wireless connection at Walter Reed.  My sisters gave me a lot of technical mumbo jumbo as to why, but I heard blah, blah, blah.  All I know is that I cannot write any blog updates while we are at the hospital unless I want to try to write them on my tablet.  That will never happen.  Now that Jim is back and we are back to our alternating night schedule, things should get back to normal.  Hopefully, Zack will only be at the hospital until Friday.  Fingers crossed!

I am off to my comfy bed to get some good sleep.  But first, I’ll leave you with some pictures of our stay so far:

Zwr7

Zack and Jake reenacting a scene from Star Wars

Zwr6

The Hero

Zwr5

Big Brother soothing his buddy.

Zwr3

Super Heroes

Zwr1

Zack and Aslan the Leonberger Puppy

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

What On Earth Happened? — Surgery #2

You may be asking yourself, “What happened to Zack?”  I thought he was doing so well.  He was doing well.  He had more color, he had spunk, he was smiling, but it was all because he had a tube in his intestines diverting fluid from his obstruction.  His happiness was dependent on the tube.  And then it fell out.

How does a tube fall out of your body?  Well, Zack’s tube was sutured to the wafer of his ostomy bag and then secured with steri-strips.  It was quite the invention and it worked really well for 48 hours.  Eventually, the steri-strips just couldn’t hold the tube and it literally fell out of his abdomen while he sat playing a game on the computer.  His surgeon decided to see what would happen if we just left it out.  As we feared, Zack’s intestines did not drain.   He began to need to be drained again and he began to be uncomfortable again.

On Monday, Zack’s surgeon began saying that our plan was changing.  No longer was there talk of us going home. On Monday night at 10:30 p.m. as he was draining Zack’s stoma,  he said Z would have another surgery within the week to fix the problem.  Tuesday morning rounds came and he told me that Z had been added to his schedule and would be having surgery in a few hours.  My head started spinning.  That wasn’t next week!  He felt that Z’s intestines were no longer tolerating the draining well.  He did not feel comfortable sending us home to drain them when they were so irritated as there was a chance we could puncture his bowel. Most importantly, Z’s condition without the tube was not going to get better.

The procedure was explained.  I signed consent forms, called Jim and our family and then sat down and tried to make sense of what I had just heard.  The surgeon said that having surgery 2 weeks out from your original surgery is really bad timing, but that it could not be helped.  He wanted to do a laparoscopic procedure, but felt it would end up being an open abdominal procedure.  He told me that he would open Zack, see if he could isolate the kink and fix it without cutting his intestines.  He also told me that this was probably not possible.  He also needed to redo Zack’s ostomy and he would probably now have two separate stomas instead of one stoma.  We met with anesthesia and off we went.

Let me tell you, waiting for your child to come out of surgery is torture.  How are they doing?   Is everything going according to plan?  So many questions. Time feels as though it has slowed down and almost stopped. It was supposed to be a 3 hour procedure.  At 4 1/2 hours the doctor finally came to get us.

The surgery was an open abdomen surgery.  15 cm of Zack’s bowels were taken out because they were just too dilated to save.  The new end was attached to a new stoma on the left side of Z’s abdomen.  This new stoma is the ileostomy.  The “old” stoma was fixed so that there is now only one hole that leads to the large intestines.  The large intestines are now completely cut off from the small intestines.  The surgery scar is right down the center of his abdomen around his belly button and a little bit down.  It was a pretty involved surgery.  When the surgeon came to get us, he told us that Zack was going to be spending the night in the Pediatric ICU because he needed a blood transfusion.  He had lost the normal amount of blood for the procedure, but his hematocrit was low to begin with and he was pretty pale.  Turns out he hasn’t needed that yet…..

Once in the PICU we realized that Zack was in a LOT of pain.  Pain medicines were started.  He got Dilaudid, Ketamine, Tylenol, Zofran, more Dilaudid, and Fentanyl.  The boy was drugged and nothing was touching his pain.  Our night was miserable.  Seriously.  He did sleep for an hour between 2-3, but the rest of the time was in major pain.  I did not like that.

The pain continued this morning and the pain management team suggested doing an epidural.  Jim and I signed the consent forms, but when anesthesia came in and said we would have to do it under general because the “stuff” draining from his NG tube put him at risk for aspirating, we reconsidered. We consulted with the team from anesthesia, the PICU doctors and our surgeon.  In the end, we decided that we just couldn’t put Z under general again.  His body doesn’t react to things in a typical way, our hospital stay has not been typical and we didn’t want to subject him to the risks of another procedure so soon.

The new plan was/is for pain control using Toradol, Ketamine, Zofran, Dilaudid, Tylenol, and Fentanyl as well as battelfield acupuncture.  I had never heard of using acupuncture in the hospital before, but it was offered as an option and it sounded like a great idea as the other options were not working well.  I found this article for those of you who want to know a little more:

http://www.naturalnews.com/035544_battlefield_acupuncture_painkillers_soldiers.html

Here are two acupuncture photos for you:

Sorry this one is blurry.  You can see the one in his forehead and some on his ears.  He slept through the whole thing.

Shortly after making our decision, Zachary fell asleep.  We don’t know if the drug dosage was finally large enough or if he was just totally exhausted, but he slept for 3 hours!  We were thrilled because he needed a reprieve from the pain.  During that time a glorious thing happened…..his ostomy started to work!  I did a little happy dance and we texted our GI, took pictures of the output for him (no worries, they will NOT be on the blog), and told the nurses – they clapped.  It’s a big deal.  It works and is a huge step toward going home.

Zachary is still in the Pediatric ICU tonight.  He has tubes and wires and drains everywhere.  Here is a picture of his IV pole tonight:

It’s a double-decker rack.  As crazy as this seems to me, the nurses have told us that some people have two racks filled with medicine.  I hope I never have to see that!  In addition to all the pain meds, Zachary has an antibiotic called Zosyn, TPN with Lipids, and fluids hanging.  I get a headache trying to figure it all out.  I’m glad it isn’t my job!  To get all of that into his body, the nurses added another IV with two “ports” to his right hand.  Here’s a photo of that:Th

As you can tell, he’s been through a lot these past 17 days.  We are beginning to see signs that things are headed in the right direction.  Our surgeon has cautioned us that Zack’s body doesn’t work like one might expect, so we can’t say for sure when we can come home.  We have one more night in the PICU, at least.  The drugs he is on now can not be taken to the regular ward, so his pain will have to be controlled by other drugs first.

Once back on the ward, we have to start disconnecting tubes and introducing fluids again before he can eat.  In addition, Zachary’s white blood cell count has elevated.  It could just be from the stress of the surgery or it could indicate a beginning infection. Since he had a bowel reconstruction, it is considered a “dirty” surgery and at more of a risk for infection.  He’s already on a big antibiotic in hopes of squashing this, but will be monitored closely for the first 5 days after surgery.

There you have it.  I’ve typed as much as I can.  My eyes are stinging.  Jim and I would like to thank you all for your prayers, meals, gifts, calls, texts, visits, etc.  Please continue to pray for Zack as he works to get better.  We can’t wait to go home.

For now, I’ll leave you with a few fun photos of the days before this surgery:

Zack and Laura Lee the Golden Retriever therapy dog.  She looks a bit like our dog, Rugby, and was very patient as Zack patted her head over and over.  I’ll remember these dogs as one of my favorite things about being here.

Finally, a photo that makes me smile.  Zack’s teachers came to the hospital to visit and to bring him his graduation cap and certificate from preschool.  We’ve got a lot of healing to do because we’ve got a big year coming up! We can’t wait to see you all at home soon!

Dawn

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:

photo (26)

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:

photo (16)

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:

photo (17)

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.

photo (14)

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