Sickness, Graduation, Fun and Waiting

What a whirlwind this past week has been! Let me start at the beginning.

One week ago, Zachary’s ostomy went crazy in the output department.  A normal ileostomy should produce between 300-500 ml of output a day.  Zack has never fit into that category.  His output usually averages about 1,000 ml out per day.  Last Sunday, for no apparent reason, Zack’s ileostomy had 2,650 ml out and our boy was illin’…..a word meaning feeling pretty darn sick.  Previous to this, Zack’s highest recorded output was 2,300 ml while he was in the PICU.

Zachary was so sick that HE asked to be taken to the hospital for an IV.  Yeah.  He never asks to go to the hospital and asking for an IV?  Well, that has only happened one time before three years ago when he had a small bowel obstruction.  Obviously, I wanted to take him to the hospital right away.  Jim, being the man of reason in this situation, thought we should wait a bit and try to manage at home.  I agreed, with the stipulation that we text his doctor.  His doctor advised us to have a low threshold for taking him in, to bring him in for labs in the morning if we decided not to come in, and gave us instructions on how to rescue dose Zack with CeraLyte.

This is the part of my story where I sing the praises of Zack’s g-tube. His g-tube is a permanent tube that goes directly into his stomach and allows us to administer medications as well as formula.  The idea of a permanent feeding tube in Zack’s stomach took some getting used to, but now I cannot imagine his life without it.  I actually wish we would have gotten one sooner.  This little invention allows us to manage a lot of things at home that once would have landed Zack in the hospital. It is a wonderful invention and I am so very thankful that he has one.

Back to my story….later that evening our guy said that he really thought he should go to the hospital. Again, I was all for that.  Jim thought we should ask our friend, Sarah, to come take a look at Zack and take his vitals first.  His heart rate was elevated, but his blood pressure was OK-ish.   Sarah advised that if we wanted to stay home we would need to check on him every few hours over night.  Jim really did not want to go to the hospital and have Zack admitted when he was OK-ish, so we stayed home and monitored Zack.

As much as I hate to admit it, that was probably the right call.  Zack was a bit more lively in the morning, but still not great.  Zachary’s lab work that morning showed that he was low in sodium and chloride and had signs of dehydration.  All of that WITH his g-tube.  Happily, his output slowed down and his doctor talked me off the ledge.  I was really not comfortable with how sick Zack had been the day before.  We were getting ready to head to Texas and I was worried about getting his sodium levels back up before our flight.  His doctor said that while IV fluids would bring his levels up in a much more controlled way (and quicker), being that his output was back to a reasonable level we could bring his levels back up at home with his CeraLyte.

Jim and I believed that Zack had a 24 hour bug and that he was fine.  We flew to Texas on Thursday and Zack was a dream on the plane.  He sat quietly and did not fidget.  That should have been our first clue that something was amiss.  We arrived in Houston to spend the night with family.  Zack spent the afternoon playing with his cousins and having a terrific time.  Overnight he developed a fever and woke burning up.  But he had output and we knew his belly was OK and we needed to get to Austin for Drew’s graduation at The University of Texas.

Texas cousins.  We call them M3 – Mason, McCain and Morgan.

When we arrived in Austin, our boy was still burning up.  Not only that, his appetite was non-existent, his head hurt and his output was crazy.  When we are at home, Jim and I measure Zack’s output with a urinal.  I refuse to travel by plane with that nasty thing and we have gotten pretty good at estimating.  We knew his output was high, but we were prepared with the appropriate amount of CeraLyte.  Zack continued to have a pretty high fever for a bit over 48 hours.

The morning of graduation Zack woke moaning and really feeling bad.  Jim and I were concerned that we might need to take him in to be seen.  The second time in one week!  We dosed him with Motrin, had Jim’s brother and wife sit with him while we went to the Master’s Convocation in the morning (thanks David and Sylvia) and started looking into which hospitals were close to us.  We made a plan for what we were going to do when we got back to the hotel and who would miss the commencement ceremony that evening.

As luck would have it, one of Zack’s nurses from Walter Reed lives in Austin.  We were able to talk to him about what was happening with Zack and he told us which hospital would be best for Zack.  When we returned to the hotel, Zack was a bit perkier.  He still had a good fever, still was not feeling great, but no longer moaning.  His fever continued through the day and he did a lot of resting on me.  However, we decided with some Motrin and snuggles that we would chance graduation.  It was outdoors and we would not be infecting anyone with his germs.  Zack’s output was crazy again, but we continued with lots of CeraLyte and hoped things would calm down.

Can you see Zack under there?  He was freezing and had a headache and generally just felt bad.  This is how he spent most of graduation day.

On Sunday morning, Zack’s output was still high, but his fever was gone.  We started feeling much better about the situation.  We had a fun lunch visiting with Drew and Lindsey and our dear friend, Chris.  Chris was a nurse at Walter Reed and one of the best we know.  He took care of Zack at his sickest and we are forever grateful.  We were so excited to see him!  Zack had not eaten that day, but we knew he had formula overnight and were not too concerned.

Here he is at lunch with Chris.  He looks great, right?  Perfectly healthy.  Who knew….

After lunch, Zack wanted to be carried.  We had put a new wafer on before lunch and there was nothing in his bag.  Not one little drop. He said his belly was hurting.  All things which tell us things are not going well.  We went back to Drew’s school and walked around.  Every time we tried to have Zack walk, he sat down on the ground and said his belly hurt.  Still no output.  Jim and I once again started to be concerned.  How did this child go from so much output to absolutely nothing?  Was he obstructed?  We really think he was.  His behavior fit perfectly with an obstruction.  It took over 6 hours for his output to start back up.  Once it did, the flood gates opened and Zack was really hungry and his energy returned.

Yesterday it was time to fly back home.  Zack had a normal amount of output overnight.  His fever was gone.  However, he woke up congested and with bloodshot eyes and a headache.  Once we got one the plane, Zack’s output once again stopped.  Once again, in the late afternoon Zack perked up.  His output started back up and he was ready to go.  Until dinner..when he said he did not want to drink too much because his brain was telling him that his belly hurt.

We got home, had a shower, got into our own beds and Zack said he felt better.  He once again had a normal(ish) night.  There was a little output.  We were happy.  When he got up he seemed OK, so we decided to send him to school.  We knew he did not eat his normal breakfast.  He told us he was full.  However, he ran to the bus and told everyone he felt awesome.  And then the phone rang….it was the school nurse.  Zack had a belly ache and was asking for Tylenol.  She gave that to him and sent him on his way.  The phone rang again about thirty minutes later.  Zack was prolapsing a bit and still did not feel well and was acting unwell and even missed recess.  I brought him home and here we sit.

Jim and I believe that last Sunday was the beginning of whatever crazy is going on now.  When Zack gets sick, his ileostomy has higher than normal output. What has caused him not to have output these past few days is still a mystery.  It has happened before and we have attributed it to positional obstruction. It used to happen a lot during the school day.  But this is a bit different in that.  On Saturday, Zack was walking around one moment and then the next he was very unwell.  We are hoping that it is still related to his virus and not a physical obstruction.  There is nothing we can do about it at the moment besides wait and see.  If you know me at all, you know that this makes me crazier than normal.

The good news is that we are home and close to our normal doctors.  If anything happens, we feel much more comfortable with the care available here than in Texas where nobody knows his story.  Zack has said he will let me know if he needs to go to the hospital and Jim and I are on alert.  Still, the only thing we can really do is wait and see…..

As I wrap up this post, I want to share some pictures of a big event in the life of our family.  Drew graduated on Saturday with a Master of Aerospace Engineering degree from the University of Texas at Austin.  Even though Zack was sick, we were still able to enjoy the weekend celebrating Drew with family and friends.  Drew has worked extremely hard for many years pursuing his dream.  Jim and I are so proud of him and very thankful to everyone who has had a part in mentoring, teaching and loving our son.  I am also grateful that we were able learn about the great history behind the Longhorn traditions.  We have never seen such spectacular graduation ceremony before.  It was a mix of a parade, a concert and Disney fireworks and something I will always remember….and I finally learned the words to “The Eyes of Texas” and how to properly “Hook ‘Em!”

Before Commencement

Drew and his girlfriend, Lindsey.  Aren’t they cute?

After the Masters Convocation in the morning.

Last picture.  I promise.  This makes me happy because it was the moment we first saw Drew and Lindsey.  I think it captures how happy Drew was/is to be D.O.N.E. with school…for now…

Hug your babies!

~ Dawn

Out Of The Ostomy

A few weeks ago my wonderful sisters invited me and Zack to tag along with them on their vacation.  Zack’s doctors gave us the green light to travel and I figured I could deal with poop here at home or I could deal with poop on the road and get out of town.  Let’s face it, our summer has not been all that “fun”, so obviously we chose to get away for a bit.

For those of you who are worried that Jim and Jake didn’t get to have fun, your fears are unfounded.  Jim’s brother was here keeping them company and they are going on an adventure of their own soon.  They get to go and sail the Florida Keys on a High Adventure Boy Scout outing.  There is no need to feel sorry for them.  I digress…

I made sure to read up on traveling with an ostomy and learned to make sure to pack more supplies than you think you will need.  That made sense.  I also learned that you should not leave these supplies in the car in the summer because the heat can mess with the adhesive.  So, I packed way more than I thought I needed and managed to get all of our ostomy supplies into one big red backpack.

Sounds great.  It wasn’t too bad.  However, I had to carry that blasted thing everywhere.  That was something I didn’t really think about.  Since I had to carry a backpack anyway, everyone added their stuff to the bag as well.  It got a little heavy at times, but my sisters are great and we all took turns being pack mules.

There were some good lessons learned.  You may want to skip this part if you could care less about ostomies or if bodily functions gross you out.  You know who you are!

First, we are still measuring Zack’s output.  In order to measure this, you must have a measuring instrument.  The easiest way for me to do this is with a urinal.   In addition, after measuring said output, you must empty your measuring instrument and rinse it out.  I don’t think many public restroom users would appreciate me trying to get that nasty thing into the sink, so I just closed it up and waited until we got to the hotel to clean it out as best as I could.  At home I can bleach the thing to death.  On a road trip, this is not possible.  It was pretty nasty at the end of the week.  I don’t know how I would do this differently, but thank goodness for 2 gallon ziploc bags.

Second, nights are messy.  We are doing better with our daytime issues as far as wafers are concerned.  We have even had one last 3 whole nights.  Praise God!  It has done wonders for my sanity.  However, nights are still rough.  We have a night time urostomy bag that hooks up to a drainage bag that hooks onto Z’s bed.  Let’s just say there are problems with this set up.  I’m quite sure that the housekeeping staff at many a Marriott were happy to see us head on our way.

Third, I did not have too many supplies.  I thought for sure I had way more than I needed.  I ended up having just the right amount.  I suppose that is better than having too few, but I was starting to sweat it the last day.  One supply that was dangerously low was gauze pads.  Next time I’ll bring a lot more.

Lastly, I learned that though ostomates can do just about anything people without ostomies can do, swimming is hard.  I’ve got waterproof tape to tape down the wafer.  I’ve got a small pouch for the fistula (it needs to be covered in a public pool).  I taped the heck out of both, but whenever we were done swimming, we were done with that wafer.  That means we didn’t swim as much as Z would have liked.  That made me sad.  I don’t want to Zack to feel like he can’t do the things other kids can do just because I can’t figure out the wafer thing.  I’m hoping to figure out a better solution because he started putting his eyes under water this week and I know he is close to figuring out this whole swimming thing.

If you get this far, you are probably wondering what the heck the title of my post is about.  It is both a warning about making sure kids with ostomies chew their food really well and the grossness of McDonald’s french fries.

When one is on a road trip in my family, one is able to enjoy a bunch of junk food.  Eating healthy on the road can be done by moms who are much more energetic and dedicated to the cause than I.  Getting my child to eat at all is hard enough these days.  He was in heaven on this trip.  However, be warned.  McDonald’s fries are not real food.  GASP!  After eating his McDonald’s fries and not chewing very well, an ENTIRE fry came out of his ostomy.  It was completely intact in his bath water.  It totally grossed us all out.

Makes you think about how they are digested in your body, doesn’t it?  Just to add more grossness to your day, watch this great decomposition experiment on McDonald’s fries and decide for yourself:

I never would have wanted to watch that video if I hadn’t seen the fry from the ostomy for myself.  My sisters and I have started making jokes about it because it was just so creepy.  Done with my public service announcement.  You’ve been warned!

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