Almost Out Of Here!

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

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

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Here is a picture of Zack today.

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

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

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

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

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

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

Dawn

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

Holding Steady

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

Come on…how cute is he?

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

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

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

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

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

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

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

Dawn

Update

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

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

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

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

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

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

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

Zack’s Update — Surgery #1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dawn