Zack’s Surgery Update – October –Surgery #3

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Friday Morning.  5:30 a.m.  Don’t we look chipper?  Our son, Jake, created an event on Facebook called Blue Friday.  He invited his friends and my friends, and they invited their friends, to wear blue on Friday to help remind people to pray for Zack and his surgeons.  Our family was overwhelmed with the response.  Thank you to all who participated.  Jim and I wore blue as well.  Here we are just before heading down to surgery Friday morning.

Zachary’s surgery ended up taking 3 hours.  I was fortunate enough to be allowed to go all the way into the OR with Zack and to stay with him until he was asleep.  I was amazed at how many people were actually in the OR.  Zack had two anesthesiologists.  One worked the general anesthesia aspect and the other worked on Zack’s epidural.  Zack’s surgeon was there as well as his residents.  The head of pediatric surgery was there.  Our GI doctor was there and a host of other people I should probably know, but they were all masked up.  I felt confident he was in great hands as I left, but it was still hard to leave.

During the surgery, our GI doctor came and gave us a little report.  It was comforting to get some news that way.  The head OR nurse called and let us know that surgery was going well and that Zack was stable.  She called again to let us know they were getting ready to close and things were still going well.  Happily, Jim and I were able to wait in Zachary’s room.  I was able to shower, we were able to eat breakfast and just hang-out together in private rather than in the big OR waiting room.  I appreciated that because I find that waiting room incredibly stressful.

When Zack’s surgeon came to get us, he looked happy.  That helped me relax right away.  He explained that when they opened Z up there was very little scar tissue.  This was great news as this was his third surgery and we still have another big one in a year to reattach his intestines.  He explained that Zachary’s stoma was being encircled by his bowels and those bowels were intermittently constricting the flow of his intestinal contents.  He said this is called an internal hernia.

The surgery team took the bowel loops out to inspect them and then “took down” Zack’s ostomy.  This involved disconnecting his stoma, cutting about 1 1/2 ” of small intestines off, and sewing up the ostomy site.  They then decided to make another ostomy site back on Zack’s right side.  They placed it just beside and a smidge below his mucus fistula so that they could save that as well.  If you’ll remember waaaaay back to June, his original loop ostomy was very similar to this.  A good thing about this setup is that his mucus fistula will now be contained in his ostomy bag again.  This makes our maintenance time much easier at home and at school and every other place we go.  Zack’s mucus fistula is incredible itchy on his skin and he was forever scratching at it and pulling off his bandages.  This will no longer be an issue.  Yay!

We met Zack just as he was being moved into the PICU.  He had a lot of tubes in a lot of places, but we expected that.  Here is a picture:

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The black thing in the upper left corner is the bag containing his epidural meds.  His epidural wire is yellow and taped down his back.  He also has a catheter for urine, and another IV in his left ankle.  When we first saw him he was also hooked up to an oxygen mask, but that was disconnected pretty quickly.  I don’t know if you can tell in this photo, but he is pretty pale.

The rest of Zack’s day was spent waking up from anesthesia.  His pain was well controlled, happily.  One of the reasons we decided to use both general anesthesia and an epidural is because of the amount of pain Zack was under in June.  He had to stay in the PICU so long because of his pain.  We are glad we decided to try this combination as it worked really well yesterday.  Just look at this face:

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So, maybe he doesn’t look happy, but he is asleep and we will take that!  He continued to do pretty well through the night.  He woke up once an hour or so asking for pain medicine and was given Tylenol.  His surgeon was in this morning at 7:15 and I mentioned his pale complexion.  He wasn’t worried as Z wasn’t in much pain.

At 4:00 this morning, Zack’s epidural bag started beeping every few minutes.  The PICU team said it was because the bag was getting close to needing to be changed.  Around 7:30 the team changed out the epidural bag.  At 8:00 (ish), Zack started complaining of pain and was soon crying out in pain.  His nurse and I thought it was strange timing as they had just changed the epidural bag, so we gingerly turned him as he screamed and saw that his back was wet.  His nurse paged anesthesia.  The PICU doctor ordered morphine.  The morphine did nothing.  He was given another dose of morphine and started to calm down.  We were still waiting for anesthesia.  The PICU team decided to add some Toradol as well.  Zack began to calm down, but was still in pain.

When anesthesia arrived and looked at his epidural, they decided that it was not leaking.  Their assessment was that Zack’s original bolus from surgery yesterday was wearing off and that he needed a higher dose today.  They upped the setting on his epidural and said they would be back to check him tomorrow.  I’m still not convinced that all is well with that epidural, but I’m not a doctor and time will tell.

Zack started calming down.  He still did not want to be touched or wear clothes or to have anyone touch his bed.  He was still crabby.  He kept telling his nurses not to mess with him.  He told the doctors that he did not feel like speaking and to please leave him alone and to stop bothering him.  If you know Zack at all, you will know that this is not like our boy.  He also told everyone that he wanted to go back to 3 West – the pediatric ward.  He said he wanted to go back where he didn’t hurt.  So sad.

The PICU, the surgeon and the ward staff all decided his pain could be managed on the ward and we were on our way back.  Before we left the PICU though, we managed to convince Zack that he had to at least wear his gown.  Whew.

Once back on the ward, Zack’s pain was still pretty high.  He received another dose of Toradol.  The nurses explained that it is like ibuprofen on steroids.  He also receives Tylenol and can get morphine as needed in addition to his continuous epidural.  He was still grumpy, but after a little nap he began to feel a little better.  His respirations were still high, as was his heart rate, but when I left tonight he was playing Wii with his daddy.

It’s Jim’s night to hang with Zack.  I’m hoping they both sleep well and that the pain is better tomorrow.  Zachary’s ostomy seems to be working really well.  I’m still a bit concerned about his coloring.  The doctor ordered more blood work tonight as well in the morning to monitor electrolytes and other things.  We will see what those show tomorrow.

Zack has still not gotten out of bed.  Today was too crazy with pain.  Hopefully the nurses can help us figure out how to get him out of bed tomorrow.  Remember, he has an IV pole, an epidural, an IV in his ankle with an IV board attached to it as well as a catheter and bag.  I’m sure it can be done, but it was too much for us to figure out today given his pain.

Big picture though, things are looking pretty good.  The surgeons were able to find the reason for his obstructions and fix it.  His ostomy is working properly.  This is better news than we have had in over 5 weeks.  We are hopeful that Zack will improve each day and that we will be home soon.  I’m still a bit hesitant to believe that given our track record, but I’m still hopeful.

Thank you all for your prayers and well wishes!  I’ll try and update as I can.  Our new laptop is not connecting with the Walter Reed wireless for some reason, so I have to wait to post until I’m home.  As I’m sure you can imagine, I’m pretty tired.  I promise to try and update regularly, but hope you’ll understand if there is a delay from time to time.   Until then, give your kids lots of hugs and enjoy having them home and healthy!

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Here we go…

Zachary is scheduled to have surgery on Friday, time to be determined. How is that for an opening sentence? It’s all I’ve got.

After meeting with both Zack’s surgeon and GI doctor today it is clear that he needs surgery sooner rather than later. His x-ray’s today showed no improvement from discharge even after a strict liquids only diet. In fact, his surgeon’s head resident said they even looked a little worse. His stomach continues to go in cycles of not too bad to distended enough that Zack wants to be drained.

Zack will be admitted on Thursday evening with surgery at some point on Friday depending on OR availability. Z’s surgeon explained that he will open Zack up along the main incision from last time that begins above his navel, around his navel and down a few inches from there. It could be bigger, but won’t be smaller than the original incision. There are a lot of unknowns about this surgery. Here are some scenarios:

1. They go in, find an adhesion, remove it and are done.

2. They go in, see something wrong with the ostomy and have to move it.

3. He may come out without a mucus fistula or with a new ostomy in a new place altogether. Remember, his mucus fistula is on his right side where the original loop ileostomy was before the revision in June. Now it just leads to the large intestine and secrets mucus, but acts as an access point for testing and “stuff”.

4. They could have to resect more bowel.

5. If they need to move the ostomy, it will probably end up back on the right side which is closer to the place the small intestine would be inside if nothing had been messed with at all.

As you can see, nobody can really say what will happen on Friday. Zack will spend one night in the PICU (if all goes well). In June, Zachary had lots of pain that was hard to control. He ended up staying in the PICU for 5 1/2 days mainly because of his pain. This time he will be given an epidural while in surgery to help with the pain. He will need to be in the PICU as long as the epidural is in place. The surgeon said to expect him to be in the hospital for a week.

Happily, we have just completed enrolling Zack in our county’s Home and Hospital Teaching Program. This program allows students who are unable to attend school due to illness to continue to receive instruction either at home or at the hospital. We were a little concerned about the logistics because we live in a different county than our hospital. However, our hospital social worker can facilitate all the craziness for us and in the end a teacher from the hospital’s county will come to the hospital to work with Zack and our county will be billed. Tomorrow Zack will meet the teacher who will come to our home to work with him before he returns to school as well as if he is sick again – praying this will not be the case! I know he will miss all his friends at school, but I am thrilled that he will actually get some instruction during his hospital stay.

Other exciting news of the day….our Pastor and his sweet wife brought the most delicious dinner over tonight. Oh my, was it ever scrumptious! Our neighbors brought us a homemade apple pie made with apples they picked themselves. We can’t wait to put Zack to bed, break out the ice-cream and eat that puppy. Yummm-o.

Zack and I also had an unscheduled Toys “R” Us visit today. I don’t usually spend a lot of money on toys for my children. They have plenty and there really isn’t anything they need. I’d rather spend money on experiences and other fun things. Today was a special day. I felt bad for my boy, it’s been a long few months, and wanted to spoil him a bit. We got some Rescue Bots and a Rescue Bot costume for Halloween. The toys are for the hospital, but it was exciting watching him carefully decide which toys he wanted.

So there you have it. Zack will go to school tomorrow and Thursday. We will check-in to the hospital after dinner and get his IV started. Zack’s biggest concerns are when he can eat real food again AND whether or not he will have to have another NG tube. He’s been a trooper and I can’t wait until this is all over.

We appreciate your prayers. We would ask for prayers for Zack’s surgeon(s) on Friday. That they would be able to clearly see what the problem is and be able to correct it. Prayers for Zack’s body to handle the surgery well. Prayers for Jake as he begins another week of being parentless. Finally, prayers for Jim and me that we would have the strength and energy to make it through the week.

I’ll leave you with this song by Mandisa. I’ve been hearing it all summer and it makes me think of many people. However, right now it is a good reminder to me that God’s is in control and bigger than even this. Enjoy!

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

A Bump In The Road

Hola!  Have you missed me?  We had a little setback here and I just did not feel like writing about it until now. Much to my surprise, I’ve learned that people other than my family actually read this blog!  Last night our small group from church met at our house and one of the guys asked me why I stopped writing.  Whoa!  You read my blog?  Thanks!  That was such an unexpected blessing in the middle of a yucky week.  Let me tell you all about it.  You’ll probably need a drink and a comfy spot to snuggle into because you might be here for a while….

In the over 22 years my husband has been in the military, we have never lived by family.  Living near DC, we are blessed to be near lots of family.  It can be overwhelming at times, but it is mostly good.  One of the best parts is that my boys get to see some of their Aunts, some of their cousins and one of their Grandma’s often.  Last Thursday, we had a “date” to have dinner at Chick-Fil-A with Grandma, Aunt A and two of our cousins.  Zack was so excited.  He doesn’t like Chick-Fil-A (crazy, I know), so we packed his dinner and off we went.  A fun time was had by all.  Seriously.  It is so fun to watch Zack play with his cousins.  He loves them to pieces.  I think Jake, our other son, had fun as well since he was able to bring a friend along.

After being in the play area, it is my rule that the child must be bathed.  Who knows what germs lurk in there!  Upon entering the bath, Zack started complaining that his stomach hurt and that he had a cramp and needed Motrin.  I thought it was a bit odd, but he does comment on his stomach hurting from time to time, so I didn’t really give it too much thought.  Ten minutes later, he again commented on his stomach hurting.  My interest peaked.  From then on, Zack was crying in pain every 10 minutes.

Jim and I changed his wafer, got him into bed and tried to make him comfortable.  At 11:45, after we decided he really was not feeling well, we finally gave the child some Motrin.  Remember..I told you we don’t like to dispense meds around here!  Zack finally fell asleep sometime after midnight and I headed to bed.

At 3:00 a.m., Z began crying again.  This time he also began vomiting and it was not a pretty thing.  Every 15-30 minutes he was sick.  He started telling us that he wanted us to call his doctor, that his doctor knew everything and would be able to solve his problem.  It was at this point that we knew he was serious about feeling bad.  I “slept” with Zack and tried to comfort him until it was a reasonable hour of the morning to text his doctor.  By 7 a.m., I decided the hour had come.  His doctor said to take him to the ER and off we went.

By the time we arrived at the ER, Zack was so weak he could not walk on his own.  His eyes were sunken and he looked terrible. He was taken right back to a room, an IV was started and all kinds of people were called.  We went to x-ray and then saw Zack’s surgeon who happily reported that Zack did not have another obstruction and that he was fairly certain that whatever was going on with Zack was not surgical.  Always good to hear!  We saw the pediatric resident who felt that Zack had a stomach bug and told us that his white cell count was high and his glucose was pretty high as well, but both could be explained by the sickness.  We also saw Zack’s GI doctor and he agreed with the other doctors.  After some discussion between all the teams, it was decided that with his history, and the amount of fluid he was outputting, it would be best if Zack were admitted.

Thus began our four day stay at Walter Reed.

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Did I mention that on that same day our dear friends were arriving to visit us from Germany?  We had plans to have fun and stuff.  Luckily, our friends were gracious and understanding and made their own fun with Jake.  One night when I came home from the hospital, all of my lightbulbs had been changed out to black lights and there was a serious nerf gun battle occuring, complete with loud music and strobe lights.  I’m happy to say that nobody shot my sprinkler heads or there would have been some mighty sad people in my house.

Back to Zack.  Jim and I figured we would take Z to the ER, they would give him fluids and we would be on our way.  Needless to say, we did not bring anything useful, like say clothes, or a toothbrush, or something to sleep in or anything to do while waiting for Zack to recover.  Oh, and our laptop is kaput!  How can one type without a laptop?  We really need to get a new one soon!  Anyway, my sister came to the rescue and brought me a bag full of goodies.  Bless you, Carie!  She was also able to witness all the staff in their infection containment gear as it was decided that Zack should be tested for an infection called C. diff.  The doctors felt he was at risk after his hospital stay this past summer.  He did not have it, thankfully, but we got a good giggle out of watching everyone suit up.  I don’t know why we didn’t have to be careful around Zack, but I guess that is something I can live without knowing.

When Zack was admitted, the ER did not have any other cases similar to his stomach bug.  The doctors told us that by Saturday, there were lots of other children coming in with the same symptoms. One of the lessons we learned from this virus is that what is a normal stomach bug for most kids can quickly become dangerous for a kid with an ileostomy.  We knew Zack was more susceptible to dehydration.  The doctors drilled that into us over the summer.  I guess we were feeling pretty confident about our hydrating abilities after surviving all those hot summer days without incident.  Needless to say, we were totally shocked at how quickly Zack dehydrated with the stomach flu.  He started vomiting at 3:45, talked to the doctor at 7:00 and we were on our way to the ER by 8:00.  I don’t think we could have done things differently.  We are hopeful that maybe this bug was just particularly nasty and that next time it won’t be as bad.  Be assured that if it does happen again, we will be watching him like a hawk!

Whew.  Are you still with me?  So we have other children.  Shocker!  I try not to talk about them without their permission, but this story goes along with the stinky week.  Our oldest son attends the University of Colorado in Boulder.  You know, the state with all the flooding?  Yep.  That one.  Our son sent us a picture at 3:15 a.m our time on Friday morning showing us how his basement flooding.  The basement happens to be the location of his bedroom.  I woke up, saw the photo,  turned on the weather channel and started trying to reach our guy and NO ANSWER!  I tried reaching him by FB, txt, friends, etc. and we could not find him for over 5 hours!  It turns out he was sleeping.  Ummmm…..We now have a rule in our family that if you are in a natural disaster you MUST keep your phone on……I am happy to tell you that he is fine.  My nerves, however are recovering.

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Just for fun, I thought you might enjoy this video of the flooding on campus.  The student in the innertube is Drew’s roommate.  They are in the honors program.  Yes.  It’s true.

To top off the week, Zachary started complaing that his stomach was hurting again over the weekend.  His output was up to 1200 ml/day.  His output should be about 400 ml/day with Imodium.  He wasn’t eating, had little energy and was totally freaking me out.  His was down to 700 ml yesterday and looks like it will be about the same today.  He is eating a bit more, but still not drinking much.  His energy is improving and he made it through the school day without incident.  Here’s a picture of how he was feeling.

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Tonight, as I put Zack to bed, his eyes were red, he was super tired and my mama radar tells me he still does not feel well.  His endoscopy procedure which was to take place on September 10 was postponed until the 27th.  If he is sick again, we will have to postpone the procedure again.  In the end, I guess it won’t really matter.  I just find it hard to gear up for sending my guy off for general anesthesia and then having to regroup and do it all over again.  It is draining.

I also have to admit that I was surprised by how exhausted Jim and I felt when we got home from the hospital this time.  It was a much easier stay, less serious, and much shorter, but we both felt completely drained by the time we got home.  After a few days to reflect, I believe it is because we don’t sleep well in the hospital, seeing Zack sick is hard and it brings up questions about Zack’s future that really nobody can adequately answer for us.

I debated writing this post because I really didn’t have anything nice to say and we all know if you don’t have anything nice to say, you shouldn’t say anything.  But then I thought about why I started this blog in the first place.  To help other families learn from our circumstances. The main thing I want everyone to know is that dehydration is no joke for kids with ostomies.  It can happen fast.  Luckily, we made it to the ER and they hydrated Zack and all is well.

I also realized that it would be really wonderful to meet another family with a child who has an ileostomy.  There are things that would be great to discuss with others in our same situation.  I’m sure we will meet another ostomate one day, but until then, hopefully something I write will help another mom.  If not, at least I’ll be able to keep our family and friends up-to-date on our crazy life around here.  If you made it this far, thanks for reading!

There’s No Crying In Ostomy….Or Is There?

It’s 12:18 a.m.  I just put my baby to sleep.  Why is that you ask?  Because we just finished changing our ostomy appliance for the third time today.  Yep.  It’s all kinds of fun around here.

Z woke up this morning with a wafer we had placed last night.  It looked pretty good until he moved.  That’s all I’ll say about that.  You are welcome.  I decided to put a one-piece bag on as we were on our way to Walter Reed to see our favorite ostomy nurses.  I didn’t want it too secure as I knew we were going to be trying out a new product to see if we can get more life out of them.

Our nurse had some new bags and wafers to try from Coloplast this time.  They looked promising, but I dislike that they have a closing device that looks like a chip clip….you know, like you would use to keep a bag of chips fresh.  I just can’t see how sleeping with that would be comfortable.  Since our current Hollister ones keep leaking, I was willing to give it a shot.  Actually, to be more accurate, the wafer ripples and then stool tunnels through.  The nurse and I got the new appliance on and off we went.  It lasted until 9 tonight.  That’s 7 hours.  What the heck?

Wafers are supposed to last 3-5 days.  We got 48 hours over the weekend and did a happy dance.  There was no dancing tonight.  There was muttering under my breath, tears by Z and by me, Skyping with big brother in Colorado as a diversion and Cut The Rope with our other big brother while mama worked hard to get the stoma paste off.

Stoma paste is applied on the edge of the wafer closest to the stoma to add another barrier against leakage and to help seal everything.  When it hasn’t been allowed to set for 24 hours it is extremely hard to get off and this causes lots of irritation to the skin.  We started working on it at 9:30.  Late to be sure, but it’s summer and our Mustang arrived today….We finished at midnight.  It has never taken us this long, but we could not get that paste off.

Zack is NOT a fan of wafer changes.  Who can blame him?  It’s like having a big gooey bandage ripped off your stomach, even when we use adhesive remover.  Add in the crazy stoma paste that will not come off and you have an explosive situation on your hands.

Once we finally got the goop off, we had to wash his skin to get all the adhesive remover off.  Think goo gone in a wipe form that is a bit greasy. Our insurance sent a box of 100 for a month.  Pretty sure we used at least 10 tonight.  They cost $51 a box.  I don’t really want to run out!

We got Z’s skin washed, dried, skin barrier wipe applied along with stoma powder for his now highly irritated skin, more stoma paste for the wafer, slapped that puppy on, added the bag and prayed.  Because really, what else can we do at this point?  Oh yea, cry.  We cried all right.  It stunk.  It was a suck fest.  And then I got mad……

I’m pretty stubborn.  I don’t like to lose.  This ostomy stuff may be sucking the life out of us at the moment, but we will figure it out.  We can’t keep doing this.  Starting tomorrow I’m on a quest to figure out the right formula for Zachary’s skin and we are going to start kicking butt and taking names.

Tomorrow I’ll post some fun pictures of Zack in his new Mustang.  He and his dad put it together today and the battery is charging.  It will be ready to go at dinner time.  There will be much celebrating and much excitement!  Stay tuned!!

Dawn

Life At Home

Some interesting (to me) statistics about Zack’s hospital stay.

  • Number of nurses and medics who cared for Zack on the Pediatric Ward: 22
  • Number of Ward doctors: 4
  • Number of Surgeons: 2 – but only one operated on Z.
  • Number of Surgical Residents: A lot, but 3 main ones.
  • Number of Surgeon of the Day (Came at night when we had issues, which was a lot) care givers: 3
  • Number of PICU nurses: 10
  • 1 Main PICU physician, 2 PICU Physician Assistants and 1 Resident.
  • Number of GI Doctors caring for Zack: 5…saw 3 most days.
  • Number of Anesthesiologists:  5
  • Number of People on PICC Line/Pediatric Sedation team: 4
  • Number of Radiologists: Not sure, but we had a LOT of xrays and one CT scan.
  • Ostomy Nurses: 2
  • Other Health Care Professionals Z saw most days: Inpatient Dietitian, Child Life Specialist and Social Worker.

I find this interesting because it took a lot of people to help Zack get better.  We are super thankful for all of them.  I’m sure there were more that I just can’t think of at the moment.  It also leads into my story of being home and what that looks like.

We have been home for 5 days.  It has been both wonderful and super hard.  We were well prepared to come home.  Our doctors and surgeons and ostomy nurses trained us well.  We felt confident it would be pretty simple to keep up with all that needed to be done.  We couldn’t wait to get home and sleep in our own beds, eat our own food, shower in our own shower, you get the idea.

The drive home was great.  When we got home, Zack had bled through his staples and soaked the bandage.  His bag had leaked and stool was everywhere.  His fistula stoma on the right side of his abdomen was irritated and bloody as well.  Welcome home!

Luckily, I was able to get in touch with the Pediatric Ward and one of my favorite nurses answered.  I was able to send a photo of the blood and she was able to help me get the situation under control.  Have I told you how wonderful the Pediatric Ward 3W at Walter Reed is yet?

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You may be wondering what our first few days were actually like.  Let me start by telling you that Zack’s case has not been “typical”.  His body has not responded as expected along the way.  Things have been a little frustrating.  That being said, I think there are probably some lessons for other families that would be helpful.

First, new ileostomies are time consuming.  We are still measuring output for our doctors and ourselves so that we know what is normal for Zack.  This means when the bag is ready to be emptied we measure the “contents” into a urinal and record the amount.  Zack then needs to be cleaned up.  This is pretty easy and just involves wiping the mouth of the bag out with a wipe….as long as there isn’t a leakage issue.  Sometimes we have to flush the bag out as well with a big syringe and water and this adds a couple of minutes to the routine.  Luckily, this can just be emptied directly into the toilet and then we wipe the mouth of the bag and we are done.  Don’t forget we still need to empty the urinal, clean the urinal and wash our hands.

I suspect that once we are done measuring output, this time will be drastically reduced.  We are getting pretty good at emptying the bag and wiping it out.  Once that darn urinal is gone, I think this part of caring for an ostomy will be the same as any other potty break.  I hope.

A bigger issue for us is that the appliances we are using for Zack are not sticking well to his skin.  He currently uses the Hollister Pouchkins two-piece bag and wafer.

 

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Our ostomy nurse has told us that we should expect to get 3-5 days from this appliance.  We are lucky to get 24 hours.  That is super frustrating.

Taking an old appliance off and putting a new one on takes time.  Especially if it is new to you.  Today it took an hour and a half.  Granted, some of that time was also taking care of other wound care, but come on!  That is a long time.  Especially to have it fail in less than 24 hours.  Add to that the fact that it is not a comfortable thing to do.  It is incredibly sticky and takes lots of adhesive remover to take off.  Then we have to wash the skin, but only with Johnson’s baby wash, and let it dry completely.  After that, skin barrier wipes are used to help the new adhesive stick and they have to dry.  Then we warm up the wafer and attach.  Zack’s skin is still sore from having the last one removed the day before and is now red and irritated….and so is he!  Here is a look at our operating room.  We set it up every day:

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I know you are jealous of how fancy it is!

Here’s a look at the supplies needed to change Zack’s ostomy appliance as well as the supplies for wound care.  The Motrin is added because Zack knows it will hurt and so he asks for it before we begin:

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We are lucky to have an awesome set of ostomy nurses at Walter Reed.  They have been working hard to help us find a solution to the problem.  They are also good at helping me feel like I know what I am doing and keeping me sane.  Mostly.

When an ostomy appliance fails, it isn’t a pretty thing.  If it fails at night while your mom and dad sleep, you will be covered in a mess by morning.  Now not only does the ostomy need attending, so does your bedding and your jammies and….Thank goodness for the air-freshner we got from the hospital.  I need to google the stuff and buy more.  If you add in a bunch of staples in your abdomen and a fistula and stitches on your right side, there is a lot that needs to be kept clean.  We have more bandages and tape and scissors than you can imagine.

I realize that this sounds like a lot of complaining.  I’m just trying to keep it real.  This is what it takes to do life at the moment.  At the hospital we had over 15 people a day at our personal beck and call.  If Zack wouldn’t drink his Pediasure, something else was found.  Bandage didn’t work, the ostomy nurse was on it.  Blood oozing out of staples, surgeon was on it.  Need a diversion to keep his mind off how much time was left until pain medicine, the Social Worker came to play.  At home, we have to figure out what is OK and what needs attention.  Do we take him back in?  Will the stool on his staples cause an infection?  How do we wash those if they can’t get wet?  Is he getting enough fluid?

Jim keeps reminding me that we are smart.  We are doing the best we can and we will figure it out.  He is right of course.  It will just take time.  It’s only been 5 days.

Lest I leave you feeling sorry for us,  yesterday was a great day.  Zack had his PICC Line removed after his blood work was checked.  No more heparin flushes at home!  It seems like we have been doing a good job of watching his fluid intake.  His surgeon said we might be doing “too good” a job as his sodium level was a little low.  I find that hard to believe with the amount of Gatorade that boy has been drinking.  Zack also got his staples removed and his stitches out.   We still have some wound care to do each day, but we are getting closer to only having to worry about Zack’s stoma and fistula.  Actually, a fistula is a kind of stoma, but for our purposes we call the ileostomy Zack’s stoma and the other one his fistula.

To celebrate, we went to see Monsters University.  Historically, Zack does not do well in movie theaters.  It’s hard for a guy to sit still that long.  It’s hard to pay attention for that long.  Yesterday he sat and watched and giggled and was happy for the entire movie.  It was such a blessing to see him so happy and excited.  So, one baby step at a time.  One day we hope this will be second nature.  For now, we will rejoice in the fact that Zack is getting better and most importantly, that Zack is home.

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Dawn

Cautiously Optimistic

What a difference 36 hours can make.  Here is a picture of Z’s face yesterday:

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Do you see any spunk or joy in that face?  Do you see any color in that face?  Nope. Me either.  Yesterday was easily one of the hardest days yet.  Each day in the PICU brought a new challenge, but we were getting better.  Each day they told us we would be going back to the ward the next day.  Friday was a rough day with pain management.  I thought it seemed like Z’s tummy was distending a bit, but I tend to lean toward doom and gloom.  I figured I was imagining things.  Friday night was not fun.  He was asking for more pain meds almost as soon as he got a new dose.  By Saturday morning, everyone saw the distention.  Nobody liked the distention.  X-rays were taken.  Distention was seen.  Predictions were made.

The doctors felt that Z might have another ileus or another obstruction or an infection or the beginnings of an abscess.  He was taken back off liquids.  There was talk of reinserting the dreaded NG tube.  His surgeon, who was in Colorado, called to talk to us as well.  To say we were discouraged would be an understatement, but I can’t think of any other descriptive words that would fit better.  Our “replacement” surgeon said that they were taking things very seriously and that they would get a handle on things.  In the meantime, we were to walk Z as often as we could.

You may think going for a walk would be easy.  You would be wrong.  Zack’s stomach was in a lot of pain.  The first walk involved lots of crying and pain and he made it 5 steps out and then Jim carried him around the PICU ward, 5 more steps back to bed and then needed more pain meds.  The doctors decided it was time to go on a low and continuous dose of Dilaudid with a PCA button (Patient-controlled analgesia).  Jim kept telling Zack that the more he walked, the sooner he could come home.  We kept telling him how brave he was and how strong he was and how proud we were.  It seemed as though he was beginning to feel better by the end of the day.  Another x-ray confirmed the distention was subsiding.  It also showed a matchbox car…it seems his bed was not completely cleared before the x-ray was taken.  I’d love to have a copy of that!

It was a long day and Zack fell asleep at 7:00.  It was Jim’s turn to spend the night and he thought it was going to be great.  Sadly, Z woke up every two hours overnight but woke bright and chipper.  All of the testing the doctors did the previous day came back negative.  Zack’s fever was gone.  He was able to walk all the way to the nurses station (12 steps?) and back to his bed without complaint. The combination of continuous Dilaudid, subsiding distention and prayer made all the difference.  In addition, Zack’s morning labs showed a decrease in white blood cells and stabilizing numbers in other areas.  After a call to the ward to see if they could handle Z’s extra meds and challenges, the decision was made to release him back to the ward!  Yipee!  After 5 1/2 days in the PICU we are back to the regular pediatric ward!

Did I mention how much we love our nurses here?  They made such a fuss over Zack’s return.

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He was so excited to be back.  He has been a chatty little boy and much more like himself.  The difference is incredible!  We’ve been walking in the ward, playing in the playroom a bit and writing thank you notes.

Getting ready to walk in my new Superman cape my brother Jake gave me.  I am pretty strong and brave.

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Check me out!

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When I get tired, my ride is right there to take me back to my room.

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Another exciting development tonight…we got rid of Zack’s second IV port in his left hand.  Slowly shedding equipment and medicines.  It’s pretty awesome.

Now that we are back on the ward, we still have a ways to go.  The doctors have all said that in order to go home Zack has to be able to walk, eat, drink and take medicine orally.  We are well on our way to walking.  Still not allowed to eat or drink.  Tomorrow we will be able to introduce very limited liquids.  Since we had such a problem with distention after introducing small amounts of gatorade, we will be going extremely slow this time.  We don’t know what that will look like, but it will take a couple of days before we are eating anything.  Then, or maybe at the same time, we have to wean off Dilaudid and get onto oral pain meds.

Jim and I are hesitant to guess when we will be coming home.  It seems like we get our hopes up and then have a set back.  However, today was a good day.  Zack smiled.  Zack walked.  Zack played.  We will count our blessings and give thanks for that!  Thank you for your prayers and well wishes.

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:

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

Dawn