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

Stomach Virus Round 2

When last I wrote, I believe I said that my mama radar was telling me that Zack was not well.  I was right.

Monday evening Zack had a fever of 101.3.  I was hoping he was getting strep throat or some other easy to treat infection requiring a few doses of antibiotics.  Sure he’d feel bad, but it would be over quickly.  Hey, don’t judge.  It’s my dream.

We gave Zack some Motrin, he went to sleep and his fever went away.  He woke up cool as a cucumber, BUT complaining of the dreaded stomach pain again.  Thinking he might be hungry, or maybe hoping he was hungry, we gave him his breakfast.  He ate a few bites and then he proved that his stomach was indeed hurting and that we should have listened to him more carefully.

Jim and I decided we should probably give Z’s GI doctor a head’s up on the situation after the strange weekend we had been having.  I mopped the floor, Jim cleaned Zack up and we debated on what our next move should be — take him in, wait a while, take him in, wait a while.  We decided, finally, to take a wait and see approach.

Since Jim is in the process of retiring from the Air Force and is enjoying some hard earned vacation time before beginning his new career, he happened to be at home.  I happened to have a lunch date with a friend I met through the hospital.  I had been looking forward to the lunch for some time.  I was trying to decide if I should cancel or go and then I realized the answer was obvious.  I should go.  I mean, how often have I been able to go out when I’ve had a sick baby at home?  Um, NEVER.  Jim’s going to start work again soon and guess what?  If someone is sick, I’ll be home.  Happily, I decided to go out to lunch with my friend, E, and we had a lovely time.

I am even more grateful for that lunch because when I got home Zack was not improving.  He did not want to drink.  His eyes looked bad and HE was telling us to please take him to the hospital to get an IV so he could feel better.  He also wanted us to call his doctor.  After texting his poor doctor again, we decided to take Zack to the ER.  I’m glad Zack’s doctor has such a good bedside manner.  He has always been kind and I’ve never felt I was bothering him.  I always worry I am bothering him, but that is a different story altogether.

You know how this story is going to end, don’t you?  Zack was admitted.  He was dehydrated.  He was vomiting, well, not until the ER gave him apple juice.  At least he waited for all three of the pediatric residents to be in his ER room to throw up.  I thought that was pretty good timing.

Today was spent mostly rehydrating Zack and testing him for various stomach bugs.  At our hospital, and I guess most other hospitals, when you are admitted because of a stomach “bug” you are considered contagious/infectious.  I get it.  Nobody else wants that junk!  So, signs were placed on his doors and people got to don their infection containment gear to see our guy.  I posted these photos on FB, but they tell the story pretty well.

stop

visitor

gloves

I tried to wait around for Z’s GI to come today, but remember those “other” children I told you about?  They need their mama, too.  At least I like to think they do, so I hurried home to see my Jake-man.  Jim was able to spend some time chatting with our doctor.  He learned a few things that I hope I get right.

First, our doctor is feeling like Eosinophilic Ganglionitis is less likely to be in more of Z’s intestinal track.  It was definitely in the portion they removed during his second surgery, but they aren’t finding evidence of eosinophils in his blood work.  This is very promising and a pretty big relief.  Of course, we have to have Zack undergo the endoscopy to rule it out.  He has to be well to do the endoscopy.  He now has a cough.  You see where this is leading.  Make your own conclusions.

Second, it could be possible that Zack has an overgrowth of bacteria in his intestines causing some of these symptoms.  There are ways to check, but they are invasive, so we may consider an antibiotic course to see if it improves without doing the invasive things.  I think this part is mostly right, but I’m also sure that it isn’t totally right.  If you are a medical person, please forgive me.  I’ve had 2 hours of sleep and even if I had slept all night I’d probably get it wrong!

Third, it is possible that Zack has a little kink in his intestines causing some little obstructions that his body works through.  A new to us doctor we had not met before, but who is a member of the GI team, threw that out there.  I’ll probably have more questions about this….

Fourth, Zack is going to be ok — eventually.  I mean, even if he has to keep his ileostomy forever, he is going to be ok.  People can and do live without their colons.  It wouldn’t be how we would chose for Zack to live, but it can be done.  It is hard to look at the big picture when you are in the middle of yuck, but it was nice to hear him say this.  This new doctor also extended us grace by saying that whether we brought Z in when we did or the day before it really would not have mattered.  They would have done the same things and not to get upset with one another if we disagree on the timing.  Gasp!  Jim and I disagree?  Never.  Or rarely.  In that moment when your child is unwell and you are trying to balance not bugging your doctor unnecessarily while at the same time trying not to freak out because you know something is not right, you’ll probably make a good decision.

zack

And now I’m done.  Almost.  Zack is still in the hospital.  It’s Jim’s night to stay.  They are advancing his diet tonight and if Zack can eat and do well, he will probably get to come home tomorrow.  We still don’t have all the answers, but we are working on them.  Jim and I are super grateful for all the doctors and nurses who help our son.  Let’s hope this time we make it more than 10 days between hospitalizations.  If not, at least we know the doctors are working hard to figure Zack out and that is such a great comfort!

Holding Steady

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

Come on…how cute is he?

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

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

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

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

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

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

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

Dawn

Update

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

photo (16)

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

photo (17)

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

photo (14)

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

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

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

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

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