Surgery #10 Update – Home

We are home.  The end.

Just kidding.  I am serious about being home though.

Everything I wrote in the last update was true.  Everything that happened in the OR was different from what anyone expected.  When last I updated on the Zachary saga, surgery and GI thought that Zack’s stomach mucosa had prolapsed.  The plan was to take Z to the OR as an add-on late in the day on Friday.

Both GI and surgery planned to work together to figure out how to handle the situation.  The GI team would perform the endoscopy to look into Zack’s belly.  From there, three scenarios were given.  One idea was to get the prolapse to reduce (go back inside) and be done.  The next was to move the g-tube to a new site and be done.  The third was to add-on to moving the g-tube by doing an exploratory laparoscopy to see if the surgeon could tell why Zack keeps intermittently obstructing.  We were prepared for all three scenarios, but hoping for the easiest one.

Zack was admitted early Friday morning so that he could get ready on the ward instead of in the Ambulatory Procedure Unit (APU).  The APU is a bay style holding area before you go into the pre-op holding area.  This place freaks Zack out and as he is anxious enough about medical stuff.  Being able to be in his own room is just better for the entire hospital.  No, seriously, it’s true…  Since he was being added to the OR schedule, that meant lots of time just waiting around.  This is how Jim and Zack felt about that.
Zack was not happy because the PICC team could not get a vein for his IV.  They decided his body was too cold.  He was wrapped in blankets with eight hot packs tucked inside.  He was definitely warm, but the PICC team was delayed and he was super warm by the time they returned 2.5 hours later.

When they finally took him back, Zack did a really good job of remaining calm.  He was able to remain in his room while he received his versed and wheeled down while he was loopy.  That made taking him back the best experience we have had in years.

The surgery and GI teams scoped him and found an area of “schmutz” (a technical term I assume) on the stomach wall that they were able to clean up.  I guess this was where the g-tube had been rubbing.  When they went to reduce the prolapse they discovered that it was not stomach tissue at all.  It was a keloid.  I read this description of keloids in an article from medicinenet.com

A keloid, sometimes referred to as a keloid scar, is a tough heaped-up scar that rises quite abruptly above the rest of the skin. It usually has a smooth top and a pink or purple color.

The doctors came into our room to tell us they had good news and bad news.  I did not like that!  They told us about the keloid and how it was an easy fix – the good news.  For the life of me, I could not figure out how there could possibly be a down side to that!  The surgeon said that the bad news was that the way they had to fix it was probably going to be something that Zack would not like.  In Dawn Speak, he cut out the area in a big circle shape, then had to cinch the skin closed, apply some ACell wound healing “paper” over it (cool stuff, you should check it out), suture 4 plastic bumper thingy’s (no idea what they are called) to Zack’s skin temporarily and place his g-tube on these.  Got it?

This is a new surgeon to Zack.  The surgeon Zack has had for the last 5 years is leaving the military, sadly.  We have known his new surgeon for some time and have heard great things about him.  However, whenever you work with a new medical team, it takes some time to learn how they work and for them to get to know you.  One thing about Zack is that lots of things that should hurt a lot do not (intestinal things) and things that should not hurt do (skinned knees).

Anyway, Zack does not seemed phased by this new configuration of g-tube hardware.  It only needs to stay in place for 14 days, yay!  However, for those 14 days he is not allowed to participate in PE, recess, karate, PT, ride his bike, run, jump, you know…have fun.  He has only asked for Tylenol a few times and seems to be walking around just fine.  Our biggest issue, so far, is that the wound and tube are covered in Tegaderm with a little hole cut out for the feeds to attach.  The Tegaderm is like a plastic sheet covering the g-tube to protect it.  We like that, however, to attach the tube to the g-tube, you have to actually grasp part of it that is under the plastic.  This makes attaching the tube quite an event as Zack stomach is sensitive to being pushed on at the moment.

Another issue we had at the hospital is that anesthesia caused Zack to be nauseated for the first time ever.  He was sick in the PACU.  He got some Zofran and was sick again on the ward.  The next morning he woke as happy as could be, except that he was asking the surgical resident and nursing staff for sodium.  They did not give him any.  Shortly after that, he started to say his head was hurting, took off his glasses, turned off the TV and asked me to close the blinds.  Then he started telling me that he needed his stomach vented because the IV fluids were filling his stomach too full.  We called the nurse and when she asked him how he felt his said, “Not awesome.”

Zack was given some Zofran and IV Tylenol and still did not feel great.  The therapy dogs came to visit and he pet them and went back to bed.  Zack does not stay in the bed unless he feels pretty bad. The surgeon came in and said that we should give him his sodium pills and start his CeraLyte back up, but keep him on just sips of clears.

Another thing that happened yesterday was that the surgeon was able to see Zack go 5 1/2 hours without output and the nursing staff saw his belly distend.  Zack’s GI knows this happens frequently and we know that there is really nothing we can do about it, but it is weird and frustrating.  The surgeon agrees with everyone else that he is obstructing intermittently. We talked about living with this for the past two years and being able to continue doing so since it has not become an emergent issue.  But we were also able to talk about how that keeps us a bit anxious most of the time because we know it can lead to more serious issues.  We left it at that, but at least he is aware and thinking about it now as well.

Happily, after Zack received all that sodium and a had good night’s sleep he woke up back to normal.  He was thrilled to order a pancake for breakfast and noodles for lunch and could not wait to get home.

He got his wish and his best buddy was here waiting to greet him.  Now for mom and dad to get some rest……

Hug your babies!  But not too tightly if they have just had abdominal surgery….

~ Dawn

Getting Closer To Home

What a week!

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

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

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

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

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

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

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

A visit from some clowns.

Look at the hat they gave Zack!

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

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

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

Dawn

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