Update

After my last post, Zack’s doctor and I decided that it would be best to have Zack seen in the clinic.  Over the past two weeks, we have avoided hospitalization three times.  I think I needed the visit for my mental health as much as Zack needed it for his physical health.  One of the things that is hard to understand about living with a child who is chronically ill is that they can be fine one minute and really sick the next.  As a parent, it can become tricky to navigate the areas between when he is not quite himself and when he is needs to be seen.  Trying to determine when to call the doctor, when to stay home and hoping you are not putting him in danger can be emotionally exhausting.  Fortunately for us, this year we have enjoyed a nice respite from the hospital.

At Zack’s visit with the doctor we decided that it was time for Zack to have some imaging done.  We had been discussing doing this for some time.  Given his crazy high output a week prior and three days in a row of limited output (along with a prolapse thrown in to make things even more fun) it was time to be checked.  We tried to get him into radiology that day, but they were completely booked.  That made me a bit sad because the best time to see what is happening is when he feels bad.

The next morning we headed back to Walter Reed for a small bowel follow through. This test requires drinking barium.  Barium is a nasty, chalky white substance that makes Zack literally gag.  After a few swallows and a couple of gagging episodes, we decided that we should try giving it to him through his g-tube.  Have I mentioned how much I love that thing?  Maybe once or twice?

Zack’s small bowel follow through was done using fluoroscopy.  Fluoroscopy allows the radiologist to see how the intestines are moving in real time.  Zack’s intestines moved the barium pretty quickly until a spot near the end.  Then it seemed as though the barium kind of pooled in one spot and took forever to go the last little bit up and out of his stoma.  Evidently this is normal and no issues were found.  That frustrated me, but I should not have been surprised.  Zack has had this test before.  At that time he was really sick and no issues were found.  Zack’s doctor had warned me the day before that we only had a 30% chance of finding something, but still I was hopeful.

The hardest part of the test was hearing Zack ask the radiologist if she had found the problem yet.  He really wanted them to find the reason his belly was hurting.  Zack’s doctor helped put things into perspective.  He said that, though frustrating, not seeing dilated loops of bowel or obvious areas of poorly functioning intestine decreases the likelihood of needing another surgery soon.  That is a good thing!

On Friday Zack was able to attend school.  He did ask for Tylenol for his belly, but otherwise had a seemingly normal day.  Friday night he had a great time playing in the neighborhood.  I’m attaching a video of one of the many reasons I love it here (it may take a few minutes to buffer).  All of the kids were playing lacrosse when this happened:

If this does not give you warm fuzzies about how great kids are today, then I do not know what will.  Thank you to Liam for sharing this video with me.

Saturday was fun as well with a Memorial Day gathering at a friend’s house.  Zack’s stoma was really big that day, but he was running around like a maniac and having such a good time.  Sunday came and he slept until 8:30 a.m.  I had to check and make sure I was not dreaming.  Zack’s output was really high again.  He had a good day, but was exhausted at bedtime.  Falling right to sleep is not a thing that happens often here and he was out before we said prayers.

Early Sunday morning at about 2:30 a.m. (my favorite time of day..) Zack came in to have his bag emptied and was asking for ice water.  When I emptied his bag and saw that he had 600 ml in it, I was a bit worried.  I got an extra dose of CeraLyte in him, gave him an extra Imodium and two sodium chloride pills.  Then he started complaining that his belly hurt and needed to be rubbed.  Soon he was asking for Motrin and just could not settle.  He was acting as though he was going to vomit and just generally freaking me out.  I finally got him to sleep about 3:30 in the morning, but I was not thrilled.

Zack and I had a quiet morning in the basement.  He beat me at MarioKart.  I am pretty sure he cheated…just kidding.  He also spent the morning licking salt from a bowl, eating sodium pills and drinking water….as kids do….right?

See that little bowl of white stuff?  That is salt.  He licks it like candy.  See that white pill?  That is sodium chloride.  He gets 7 a day, in addition to his CeraLyte, and is often still low sodium.  That’s a LOT of sodium!

Jim and I pumped him full of CeraLyte again to help bring his levels back up.  I tell you all of this to illustrate to you that while Zack is “fine”, something is not right.  The test may show that his intestines are not obstructed, but this weird high output, no output thing is unusual.  Do we need to go to the hospital? No.  Do we need to text his doctor? No.  Do we have to watch him?  Yes.  It is hard to relax when things are just not right.

People often remark that Zack looks great.  He does.  It is hard to believe he was not feeling well earlier when they see him running around like a maniac.  It is hard for Jim and I to believe at times as well.  But, that is how it goes with him.  Jim likes to say it will either get better or it won’t.  Profound, I know.  Today we are hoping that Zack will perk up and that the sun will come out so that we can go to the pool.  We have fun things planned for this day.  And that is what we do.  We try to live each day as if everything is alright.. until it isn’t.  Otherwise we might just go crazy.

Update to the update:

Zack did go to the pool.  It was freezing!  His buddies from our neighborhood were there and he was unusually quiet.  His cousin called and invited him to our local fair.  We went.  He had fun and went on rides, but was quiet.  Zack is not quiet.  Thankfully, last night was uneventful.  I sent him off to school today with a kiss and a hug and  fingers crossed that today will be a good day.

Zack and Tom at the fair.

Hug your babies!

~ Dawn

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

Special Olympics/Update

One of my sisters lives in Egypt. She’s the “fun” aunt. You know, the one who never says no and lets you do all of the things your parents do not allow? (Sorry to all of Zack’s other aunts, but we all know it’s true). She travels the world and does all kinds of scary and exciting things. The one thing it is hard for her to do is to stay up-to-date with the incredibly fun things we do here. The other day we actually got to talk on the phone and she asked me why I had not been updating my blog. How is she supposed to stay in the loop when I put off posting? So, Carie, this post is for you!

After the weather caused a switch in dates, the highly anticipated day finally arrived! It was a beautiful, sunny and HOT day. Perfect conditions for the Special Olympics. Zachary was very excited and thrilled that his homeroom class was coming to cheer for him.

One of my favorite things about the Special Olympics is how hard the organizers try to make each and every kid feel important and well, special. Zack loves getting off the bus to cheering fans. He was met by Storm Troopers again this year and, being a ten year-old boy, that was pretty much a whole lot of awesome! Zack met his coach, Mr. Tozer, and off they went to get ready for the opening ceremonies. Just like the real Olympics, all of the athletes get to parade around the field, there is a color guard, the singing of the National Anthem and the saying the Special Olympics motto. If you have never read it before, today is your lucky day. Here is what it says:

“Let me win. But if I cannot win, let me be brave in the attempt.”

A fitting motto indeed. One of the things we have been trying to teach Zack is to try hard and be brave even when things are difficult. Anything that reinforces that makes us happy.

Zack and Mr. Tozer. Still working on that camera smile..

This year Zack participated in the 100 yard dash, the standing long jump and the tennis ball throw. His events were pretty spread out time wise, so in between he was able to run around with his class and just enjoy the day.

100 yard dash

Look at that effort!

A medal presented by a police officer. Heaven.

Because it was so very hot and because Zack ran around like a maniac, Zack’s body decided he was done. When he finished his last event he went over to his teacher and sat down in his zombie like way that gets his parents immediate attention. He was not following our conversation and wanted to go home. I was surprised at how fast that change occurred. He was running around like crazy one second and then on the ground the next with absolutely nothing left.

Jim and I carried him to the car and got some fluid in him. We had his rescue dose of CeraLyte with us, but forgot his g-tube extender and syringe (I mean…come on…how long have we been doing this and we still forget important things), so we did the best we could until we got home. He spent the rest of the afternoon inside, resting quietly. It was a good reminder that we need to be extra vigilant in hot weather.

The week after the Special Olympics was standardized testing time here. We decided to have Zack opt out of taking these particular tests because his IEP accommodations are not allowed to be used. It’s dumb. There, I said it. Jim and I could not see putting him through the frustration of all of that testing only to end up with a result that did not show his true abilities. Instead, Zack and I decided a little vacation was in order.

Our very kind and generous neighbors offered to let us stay at their beautiful beach house in Ocean City, Delaware. Zack and I went to see the wild horses on Assateague Island and had the beach to ourselves. We also went to the Boardwalk in Ocean City, Maryland where we had front row parking, ate pizza and ice cream and made a pretty amazing sand castle.

Now that is an ice cream and totally worth the belly ache!

It was a wonderful trip and Zack did not want to leave (neither did I). As we were getting ready to come home, Zack asked me to take a picture of us so that we would always remember how much fun we had. I’d say that our trip was a success!

Medically, Zack is still holding steady. His output is annoying. Super high many days and then randomly low. Consistently way above our target goal. His stoma made it through the month of April without a true prolapse. Woot! Currently, we are also having issues with his g-tube. It’s pretty painful and when we replaced it last night (we do this every 3 months), we had quite a hard time getting the old one out and the new one in place. I am a bit concerned there might be a bit of an infection brewing. Time will tell.

Finally, Zack and I had a talk the other night about belly pain. Zack told me (again) that his belly is still hurting everyday. I know it hurts often, but he does not always ask for pain medicine. In addition, Zack has been acting mostly fine and that makes me happy. However, when your ten year-old tells you that his belly hurts every single day, one should pay attention. I told him that we could tell his doctors about it and that they could probably help take his pain away. Here is his response. “Mom, I don’t want them to take all of my pain away! It’s how God made me and part of my body.” Yeah, I’m still pondering that one….

Hug your babies!

~ Dawn

Attitude Adjustment

Oh my gosh you guys!  I was totally having a pity party and throwing a mini temper tantrum yesterday.  You see, I was upset about some really petty, minor inconveniences in my life.  And boy do I mean upset.  My heart rate was up, my mood was foul, and I could not see past what was happening right that moment.  I even wrote an entire blog post about it.

What’s that?  You did not see the post?  That is because I decided to sleep on it before I published it.  Wow!  Am I ever glad I did.  What I realized when I read it again this morning was that I totally needed to get a grip and reset my attitude.  Jim and I often tell the boys that you cannot always change your situation, but you can change your attitude about it.  You get to decide how you view your day.  I am sure that Drew and Jake can attest to that.  I am also sure that they LOVED it when we said that to them.

One of the best ways for me to do that is to remember all of the good things that are happening right now alongside of the thing that upset me.  Instead of sharing all of the gory details of yesterday’s woes, I will instead be sharing some awesome things that are happening around here.

1. Zack went under general anesthesia last week to get six teeth pulled and he did not lose his mind.  He was able to be fairly calm and cooperative.  This was a gigantic improvement and a very encouraging sign that all of his anxiety therapy is beginning to work!

2.  Zack is still stable.  High output continues to plague us along with the occasional prolapse, but he is doing well and growing and we are managing well at home.

3.  Zachary “aced” his math test yesterday.  Not only did he get an A, it was on grade level and the same test his classmates took.  He gets intensive intervention at school and it is working!  His teachers deserve a lot of praise for the time they take with him daily.  Zack works really hard and we are so proud of his persistence, especially when things are hard.

4.  Zack was promoted to Orange Belt in Karate. He loves finally being able to be in a sport – especially one with such a cool uniform.

3.  Jake is having a terrific first year in college and will be an Orientation Advisor over the summer and a RA in the fall.  College life agrees with him.  It is exciting to see Jake thriving and happy!

4.  Drew is a few short weeks from completing his Master of Science degree in Aerospace Engineering.  He also just accepted a position with the Jet Propulsion Lab in California.  I still remember my sweet boy correcting his first grade teacher about the orbit of Venus….sigh.  Drew did all of the hard work, but Jim and I are pleased to have raised our first fully functioning adult.

5.  I have an incredibly hard working husband who loves our family.  He wanted me to write a smokin’ hot husband, but I did not want to gag you (or my older boys).  You are welcome.

Thinking about those things helped me reset my attitude.  There are many other great things happening, but my family makes me pretty happy.  That and a good night of almost uninterrupted sleep.  Zack is up to sleeping through the night about half of the time now.  Also an improvement.  Real sleep every night is still my goal in life.  I am much nicer when that happens….

I realize that this post is not my normal kind of post, but it is something I needed to write for myself.  I also realize that this sounds more like a Christmas Letter.  I will take that as a sign that this is more than long enough.

Hug your babies!

~ Dawn

One Year Ago

One year ago this weekend, I was in the hospital with a freak illness and Zack was home sick with a blizzard howling outside.  It was crazy and scary and I hope to never go through that again.  Happily our story has a good ending thanks to a great fire department, great neighbors, great doctors and great nurses.  It was also the last time Zack was hospitalized.  One year ago…..

One year without being hospitalized is something we had been dreaming about for three years.  We can hardly believe it.  So why am I not doing a happy dance?  Why do I still have a feeling of dread in the pit of my stomach more days than not?  Do I just need therapy?  Most probably.

Just for my own record, I have decided to log what went on this past year.  It is not a post full of new information.  Writing helps me process things and I want to get all of this down to see if it might help me figure out what this annoying sense of unease is all about.  Feel free to read on, but just remember that I told you….I am processing.

January – Zack was hospitalized with extremely low levels of sodium in his blood.  In fact, when he arrived at the hospital he was admitted straight into the PICU.  He spent ten days inpatient while the doctors tried to get his output and sodium levels under control.  We started giving Zack CeraLyte in hopes of keeping his sodium in check.  His output remained high with no explanation found.  Still had random belly pain.  He kept his PICC line from December.  In fact, our neighbor/doctor friend was convinced his PICC line saved his life over the blizzard.  Positive – Great neighbors, fire department, doctors and nurses.

February – Still in the hospital working on sodium.  Later in the month he had another endoscopy, colonoscopy, biopsies, pancreatic stimulation test and lots of blood tests for weird and unusual things.  During the scopes he had a new PICC line placed as his other one was accidentally pulled out of place during a dressing change.  The new PICC line caused him to have PVC’s because it was too close to his heart.  That was an easy fix the next day, but it still freaked us out a tiny bit.  We continued weekly visits to Walter Reed for blood sodium level checks.  Output remained high.  Belly pain continued.  Stoma was often enlarged. Positive – All of the tests for weird and unusual things came back negative.

March –  Continued with weekly/bi-weekly blood sodium and urine sodium checks.  Zack had a few weeks where his sodium level was decent.  Began stool refeeding trial through Zack’s mucous fistula.  It was not successful and resulted in lots of distention and pain.  Output remained high. Belly pain continued.  Stoma was often enlarged. Positive – We learned Zack’s colon was still unable to process stool.  More confirmation that his colon does not work.

April – Same as March, but sodium levels are low again.  Output still high.  Belly pain continued.  Zack often said he felt like he was going to prolapse again, but thankfully did not.  Stoma was often enlarged.  Positive – Zack participated in the Special Olympics and the entire second grade came to watch him!

May – PICC line removed.  Sodium levels checked via blood and urine sample and remained low.  Zack’s doctor felt we could manage things via urine checks alone.  He was concerned that the risk of a line infection was greater than the need for his PICC at this point.  High output and belly pain continued.  Swollen stoma. Positive – Our family was able to help the Nathan Chris Baker foundation with their fun run by handing out water at the halfway point.

June – Low sodium.  High output.  Belly pain.  Swollen stoma.  Periods of no output.  Positive – Spent lots of time swimming.

July – Low sodium. High output.  Swollen stoma.  Periods of no output.  Positive – Zack got to have a summer doing normal kid things for the first time in three years.

August – Went to Boston Children’s Hospital to follow up with Zack’s surgeon and to get a feel for her new hospital before we have an urgent need.  She works with one of the leading pediatric GI’s in the country and we met him as well.  We were hopeful that he might be able to make sense of Zack’s belly.  Theories were given.  Maybe a weird auto-immune thing.  Maybe eosinophilic ganglionitis.  In reality, nobody knows.  Boston really wanted his sodium and output better controlled and suggest adding Cholestyramine to his routine.  Sodium remained low, output high.  Belly pain and swollen stoma continued.  Periods of no output still occurred.  Positive – We took our first family vacation in three whole years!

September –  More of the same.  We met with Zack’s Walter Reed surgeon to catch him up on all that happened while he was deployed.  Start Cholestyramine.  Belly pain, high output and swollen stoma’s abound.  Still had periods of no output.  Positive – Zack was able to start karate (no sparring)!

October – Zack began to feel worse.  Periods of no output for 8-9 hours are happening with more frequency.  Stoma is getting very enlarged.  Belly pain increased.  Positive – Zack was able to walk the entire neighborhood this Halloween!

November – Zack was in pain often.  Stoma prolapsed twice.  Periods of no output with belly pain and then lots of output and relief occurred frequently.  Doctors decide that Cholestyramine was the culprit and causing intermittent obstruction.  Zack was taken off the drug and felt better right away.  Output still high.  Positive – Zack participated in the Turkey Trot at our local Y.

December – Met with Walter Reed GI. Zack gained weight.  Yay.  Sadly, not as much as the doctor would have liked.  Overnight formula feed was increased.  Zack’s doctor was waiting to hear from Boston about how to proceed with a steroid trial.  High output continued.  Doctor said we could stop urine samples and just assume that Zack’s levels are low.  His sodium has been low for several years.  Jim and I had been managing the levels pretty well with CeraLyte and sodium pills and know when Zack needs to be seen.  Positive – We were home for Christmas this year and not in the hospital.  We managed to keep a bottle of Tylenol in the house for more than a week.  Zack felt mostly well this month.  A true Christmas miracle!

January – High output.  Probably low sodium.  Belly pain.  Periods of no output.  This past week, Zack has prolapsed, had significant belly pain and stoma swelling.  His belly hurt so badly on his birthday that he asked me to let his doctor know his pain level.  I can only think of two other times that he has asked me to do that.  When questioned about how often his belly was hurting, Zack said his belly hurt on Mondays, Tuesdays, Wednesdays, Thursdays, Fridays, Saturdays and Sundays.  I guess that says a lot.  Positive – Drew and Zack’s joint family birthday party.

I realize now that I have answered my own questions and understand where my unease is coming from.  Zack still has unexplained medical issues.  Interspersed with periods of his usual yuck, he has periods of time where he seems to feel pretty good.  During those times I allow myself to think that we are past the worrying stage.  I think about how many months he has managed to stay out of the hospital.  I start to get excited about the possibility that we will be able to manage his life like this without anymore interventions.  And then he prolapses and has belly pain and periods of no output.  That old feeling of dread, which was almost gone, returns full force and causes me (and Jim) to wonder if we will be going back to the hospital, if he will need more surgery, if he will obstruct completely.

No wonder I cannot seem to shake this feeling.  Will it ever leave?  I hope so.  After this past week, however, I do not think that will happen for a little while longer.  Zack felt bad four out of seven days.  Even so, Zack has improved over the past year.  That is huge!  Baby steps are still steps. Tonight I will be grateful for that. Tomorrow I will work on trying to worry less….yeah, right…..

Happy New Year!Happy Birthday, Zack!

Hug your babies!

~Dawn

 

Good News

Zack had his appointment with his GI today at Walter Reed.  It was the first time we had seen him in person in awhile as Z is now in a place where we can manage a lot of things by text and phone.  How cool is that?  With all of the issues Zack has been having over the last month, it was time to have him checked out.

We talked about Zack’s prolapsing, obstructing, swollen stoma and lack of output.  For whatever reason, it seems as though Zack is one of those chosen few who do not tolerate Cholestyramine well.  I guess someone has to have those “rare side effects” listed on the medication printouts…why not Zack?  We talked about some of the ways the medication may have been causing him to intermittently obstruct.  The good news is that since discontinuing the medication, Zack is feeling a lot better.  His doctor did not have another medication to try at this time.  Although having high output and low sodium is not ideal, we have a system in place for watching it and for trying to keep on top of replacing his losses.  We know how to tell if he is not doing well and when to take him in to be seen.  We have done it for three years, so we will just keep on making it work.

Zack’s weight was still a bit lower than what his doctor would like.  He is up to fifty-four pounds which sounds like a whole lot to me.  His doctor told me that Z did not gain weight between the ages of eight and nine.  That is not really surprising when I think about all the hospitalizations he had during that time.  This year he has gained weight, but not at the rate he would like to see. Beginning tonight we will increase the amount of his overnight feeds and hopefully that will do the trick.

Today was supposed to be a blood draw day for Zack.  He has been working hard with the therapist he sees for Medical Trauma Therapy to get ready for this big day.  They have progressed from talking about blood draws, to watching videos, to simulating the event with an empty syringe and tourniquet.  Zack told his therapist on Monday that he was not at all afraid and that it would be “a piece of cake.”  He decided a bottle of Gatorade would be an appropriate reward for being brave and requested his favorite nurses do the testing.  You will just have to believe me when I say this is a HUGE improvement and that I was very proud of him.

Imagine our surprise when his doctor said that Zack looked so good today that he did not feel that he needed any labs!  While I am always glad to hear that, I almost wish Zack would have gotten labs today so that HE knew he could do it.  Almost.  Have no fear, he still got his beloved Gatorade!

On our way out of the hospital we were able to see a few special friends.  It always makes Zack’s day (and mine) to say hello, especially as an outpatient!  To make a great visit even better, one of Z’s favorite nurses had a special gift for him.  He was so excited he could barely stand it and could not wait to get home to build it.  Here it is:

img_6465Once again, things are looking up around here.  We will be home for Christmas this year with no planned procedures or surgeries.  Zack’s big brothers will be coming home from college soon and we are looking forward to a quiet December.  Fingers crossed!!

Hug your babies!

~ Dawn

 

 

 

November 2016

November was a busy intestinal month around here. You know how I feel about busy intestinal months. Do you remember me saying that Zack’s surgeon told me I could not stop worrying?  Yes, well…

When I wrote last month, I told you about Zack’s stoma swelling and having issues with little to no output during the day at school.  You can read about it again if you are bored here.  Those issues continued throughout the month with Zack’s pain level increasing and setting off my mama radar once again.

Near the beginning of the month, Zack prolapsed twice after being prolapse free for almost an entire year.  He was at school when the first prolapse happened and I think it surprised everyone.  Zack ended up having between 4-5 inches of intestine out and it took an hour and a half of resting on his back to get it to go back down.  Zack said it hurt a lot and I believed him.  It is hard to fathom that he went to school his kindergarten year with up to 9 inches out almost every single day.  Zack prolapsed again about a week later while in the shower.  Thankfully, we were able to get that one back in much faster.

img_63751Waiting for his stoma to go back into his belly.

This past week my mama radar was keeping me awake.  My mama radar is almost always right.  While I always question myself and drive my poor husband crazy talking things over and over and over, sometimes a mom just knows something is wrong.  Zack’s doctor had us discontinue his Cholestyramine.  One of the side effects in a small number of patients who take this drug is intestinal obstruction.  Jim and I were not sure how effective Cholestryramine had been and it made sense to us, so we stopped giving it to Zack.  Friday Zack had a great day at school with 300 ml out (his “normal” amount), he did not ask for pain medicine and his stoma was not swollen.  Yipee!

Today Zack had a good day.  Since his belly felt better, he was FULL of energy.  When I say FULL of energy, I am not exaggerating.  However, his output was really high and super watery once again.  We think the Cholestyramine thickened his output a bit and helped his sodium levels some.  However, if it truly was the culprit in Zack’s lack of output and prolapsing and swollen stoma, we will take our chances with really high output and low sodium levels.  Fixing an obstructed intestine usually means surgery and nobody wants that.  We have more options left to try to help manage Z’s low sodium and high output.  I am guessing we will have to monitor Zack’s sodium levels more closely again, but that is still preferable to more surgery.  As long as Zack does not get a stomach bug, we should be OK.  I hope.  If you are into buying stocks, I am sure that Morton’s stock should be going up as they try to keep up with the demand my son produces.

Next week we will head to Walter Reed for the first time since the end of October and Zack will have a checkup with his GI.  As usual, I have many questions and am hopeful that his doctor may have some answers.  We remain in contact with Zack’s surgeon in Boston and I am thankful for her great care and concern for Z as well.

I leave you with a picture which makes me laugh.  Our family runs in the Turkey Trot at our YMCA every year.  This year we had the good fortune to run with our family friends.  They live in our neighborhood and have two boys.  Sarah is the doctor who helped keep Zack safe during the blizzard when he was so sick.  She is the one who had the paramedics bring Z IV fluids when we could not get to the hospital because of the snow.  She spent hours with Jim helping to make sure Zack was OK.  Zack adores her.  He looks for her every day at the bus stop before school and always finds something to tell her about. He was THRILLED that she was coming to the race.

After the race, Zachary ran the kids fun run.  Rain was threatening and it was cold.  Zack decided that his eyes needed to be protected and that his ski goggles would be the best way to do that.  Jim and I ran/walked with him and he had a great time.  At the end, Sarah’s husband took this awesome picture.  I love it.  I hope it makes you smile.

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Hug your babies!

~ Dawn

 

Fall Update

I love that it has been awhile since I have updated.  Frequent posts usually mean something is up and not in a good way.  While Zack still has a lot going on, most of it is seems pretty mundane and not at all interesting to write about.  Over the past few weeks, Zack has had a few new things going on, so the time is right to update once again.

On Monday, Zack’s surgeon in Boston reached out to us to let us know that the team there (GI, surgeon and pathology) had gone over all of Zack’s previous testing and biopsies and everything looked “pretty normal.”  Given that nobody can figure out what caused Zack’s colon to stop working or why he has such high output, this really was not surprising.  We are still waiting to hear what Boston’s pathology department thought of his eosinophilic ganglionitis and hypertrophic nerve cell slides.  Those are really the only ones we have ever had come back questionable.

Last week we met with Zack’s surgeon at Walter Reed for a routine follow-up.  Since he recently returned from a six-month deployment, we wanted him to actually lay eyes on Zack and bring him up-to-date on everything we learned in Boston.  Zack’s surgeons do actually talk when necessary, but going over the emergency game plan we came up with in person made me feel much better.

One of the things that both GI doctors and both surgeons seem to agree upon is doing a trial of high dose steroids with Zack.  I have no idea what constitutes a high dose, but for sure more than the 5 mg he was on in 2015.

I was able to tell them that because Zack’s colon worked, then had zero motility, then worked in small areas and then did not work at all again, I am reluctant to try another reattachment of the entire colon.  Happily, that is not the intent of this trial.  The majority of his colon is definitely done.  Because he has had and continues to have such weird issues with his ileostomy that are hard to manage well, the best option would be to reattach his small bowel to his rectum.  As I have said many times, his high output makes this a bad idea because it would likely leave him incontinent.  Nobody wants that.

The current ideal scenario would be to find a small portion of the colon that actually works to help absorb fluid and save that to help make reattachment possible.  I am not sure how this would be tested.  Even if the steroid course helped some portion of Zack’s colon function again, he cannot be on steroids forever.  We still would not know the cause of the colon failure and how to keep it from happening again. So many questions and things I do not yet understand.

I believe (again…not sure I am correct) one of the questions the doctors have is if Zack’s issues are related to an autoimmune issue and if they do not try the steroid dose, are we risking long term harm to the rest of Zack’s intestines?  Not having a diagnosis makes things tricky.

To try and tackle the high output and low sodium issue, Zack began a new drug called Cholestyramine.  It is a drug typically used to lower cholesterol levels.  It is also used in people with high output ileostomies and chronic diarrhea from gallbladder removal to help slow things down.  It works by binding bile acid to help keep water in the intestines.

At first, Zack had a day or two of thickened output, but the volume remained high. The past few days his output has been back to the normal watery consistency.  It is possible that it is keeping his sodium levels up, but we have not had labs to confirm this yet.  I am basing this soley on the decrease in the number of times Zack is attempting to raid the pantry in search of the Morton’s salt container. Hey, I have a hypothesis, I am making observations and soon I will have actual sodium measurements to support my hypothesis.  It’s all part of the scientific method….I could be a scientist in addition to a doctor…you never know!

Zack’s stoma continues to be worrisome. It continues to swell during the day restricting output.  On Monday, Zack had zero output for over eight hours.  His school nurse said he was off that day.  His behavior in school was not stellar either.  Tuesday he told us that he felt so much better and that his pain had been up the day before, he just did not want to tell anyone.  Tuesday he had high output and today I heard that he did not have any output before lunch.  I will be interested to see how the rest of the school day goes and what his stoma looks like when he gets home.

Zack is used so used to living with some degree of constant pain, that it is just part of how we do life.  I often wonder, though, if on the days where he is extra crabby if pain might be a reason.  Honesty in rating his pain level to others is not one of his strengths, even when he is really sick.  Admitting he does not feel well usually leads to a decrease in fun and an increase in doctor visits and he is not having that!

I talked to his surgeon here about this craziness – the swelling, lack of output and pain. I asked him if I had permission NOT to worry about it since Z’s stoma is not technically prolapsing.  He said I still need to worry.  I already knew that, but I was hoping that he would tell me I was being ridiculous and to chill out.  The dreams I have in life are really pretty simple…..

Given all that, things are still millions of times better this year than the previous three years.  Zack went Trick-or-Treating and walked the entire neighborhood for the first time ever!  He participated in his school fun run and was able to run/walk 4 miles!  The biggest news is that he went two months without an actual doctor visit.  Granted, I still communicate via text with his GI most weeks and Z still has frequent labs, but not having an actual appointment is huge.

img_6368Because things are better around here, I was actually able to go and visit our oldest son in Texas.  Drew is in his second year of graduate school at the University of Texas in Austin.  He has been there over a year and this is the first time I have been able to travel to see him!  It was a wonderful weekend and, as a bonus, I was able to spend time with family and friends in Houston, San Antonio and Waco.

img_6353Our family is also getting excited about another exciting development.  Because Zack is doing better, we are getting a puppy in January!   We intend to train this new pup to become a therapy dog with the hope that he will be a comforting companion for Zack both when he is sick and when he is well AND that as he gets older we can bring him to the hospital to visit other children who need some love as well.  We are all very excited, especially Zack.  He cannot wait to meet the puppy and has already picked out a name – Captain Awesome Penrod.  We many need to work on that!

Hug your babies!

~ Dawn

A Quiet Day

Summer has come to an end..sniff.  What fun we had enjoying almost every minute.  We are grateful for all of the friends we got to see and play with as well as all of the fun places we were able to visit.  We have been on a lucky streak.  No sickness, few hospital visits and NO hospital stays.  Life has been pretty great.  Can you tell where I am going with this?

Yesterday Zack was pretty teary.  Jim and I thought it was because he slept outside in a tent with his cousin.  Slept is used loosely in this story.  My brother and Jim were supervising the night and I have heard that the boys were up late and woke early.  It would not be fun any other way!  When Zack was having a rough day, we just attributed it to his fun night.  His output was pretty high, even for Zack.  We noted it, but did not think he was sick.  We figured it was just a weird Zack thing.

Fast forward to last night.  Zack had started some new medication last week to help manage his anxiety.  One of the glorious side effects is that it makes him sleepy.  Prior to last night, he had slept through the night for seven nights — in a row!  This may not seem like a big deal to you but, in our sleep deprived world, this is huge.  Huge I tell you!  We had forgotten how wonderful uninterrupted sleep can be and how much nicer we are when we get it.  I still have not gotten to last night…

Last night as we high-fived ourselves in advance for the wonderful night of sleep we knew we would be getting, the universe laughed.  Just kidding.  We were blissfully sleeping when all of a sudden “MOM!” rang out in the house.  You know, the kind of yell that rips you out of sleep and has you fully awake knowing something is wrong?  Zack was crying for his pain medicine because his belly hurt.  We disconnected his feed and tried to see what was happening.

It was clear that Zack was very uncomfortable.  I tried venting his belly.  I gave him Motrin.  I rubbed his back, his belly, his head.  I finally just climbed in bed with him and tried to help him get comfortable, but it did not work.  Zack told me he wanted me to text his doctor so that he could help him feel better.  Those words are NOT the words I like to hear, ever, especially not in the middle of the night.  Zack was telling me that he thought his g-tube was taping his intestines and obstructing them.  I did not think he was obstructed because he had such a large amount of output so quickly, but his belly was hard.  I asked him if he needed to go to the hospital and he said no.  He just wanted his doctor to make him better.

Zack ended up getting sick around 5 a.m. and falling asleep (thankfully) at 6.  When he woke up at 8, Jim and I decided to text his doctor to let him know what was happening.  Zack looked pretty rough and we were not sure how the day would progress.  After our January fun, we did not want to take any chances.  This is how he looked when he woke up.

fullsizerender2Cue the dehydrated, sunken-eyed look.  The one that makes his parents a little (a lot) worried.  We always feel better when his doctor knows what is happening in these situations, even if we do not end up going to the hospital.  We got some advice from his doctor and have spent the day watching him closely.

Zack’s biggest regret of the day was having to miss the annual Nathan Chris Baker Foundation Fun Day.  He looks forward to going and playing with his friends and getting a new shirt.  This year I went alone and got my guy his shirt.  It was not quite the same as getting to go himself, but the shirt made him happy. I think it is obvious from his face in the following picture.  What do you think?

img_6225Zack spent most of his day on the sofa(s) sitting quietly.  Definitely an abnormality for him.  Jim and I are feeling better about how he looks and he has been asking about playing Wii later.  Z has even begun discussing the possibility of eating dinner.  I am hoping that he will feel well enough to go to school tomorrow.  Maybe this was just a stomach bug?  The problem with Zack is that we never know.  I guess time will tell.  For now, we are thrilled that we were able to keep Zack home and that he appears to be getting better….fingers crossed!

~ Hug your babies!

Dawn

Fun Things

Last week was a crazy fun and busy week.  It started off with Zack getting his PICC line out!  Zack’s doctor really only likes to leave them in for 30 days.  Zack’s was in for 5 months.  I am not complaining at all because according to our awesome neighbor who helped him during the blizzard, the PICC line helped to save his life.

Zack had gotten so attached to it that we had to slowly introduce the idea of getting it out.  As I mentioned in my last post, Zack was afraid of life without his PICC because he was worried that he would get sick again and thought that he would have to be poked way too much.  In the end, the lure of swimming, karate, recess and taking baths again won out.  Zack is most happy about having a line free arm at night.  He says it is much easier to sleep now.  For him….because he is still waking up at night….I’m not bitter…..

Another highlight of our week was the Mother/Son Dance at Zack’s school.  Zack’s original plan was to take me on a date for dinner, but the lure of Domino’s pizza won out and we had a picnic on the family room floor. He was a gentleman and made sure to tell me I looked very pretty.  He also led me onto the dance floor for every slow song and never once stepped on my toes.  Look out ladies!

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Zack had so much fun running around with his friends and being a dancing machine that, for the first time in months, his pain pose returned.

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While his stoma was pretty big and ugly, it did not prolapse.  Zack’s belly hurt for the next two days and he actually sat quietly and took a nap.  Monday morning had me a bit concerned when I found him curled up in the bath saying his pain was yellow, but he had a good day at school and was totally back to normal by Tuesday.

On Saturday, Zack had the privilege of helping the Nathan Chris Baker Foundation with their first ever Great 5K.  Zack and our family manned the 1/2 way point water station.

When I say our family, I mean everyone who lives in the DC area.  Mom, Dad, big brother Jake, his Grandma, two of his Aunts and two cousins.  We could not have done it without their help.  We were also helped by my running group, Flying Feet, which donated the cups and coolers.

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Zack did a good job helping to fill cups and cheering for all of the runners.  “Go Out.  Be Great!”  It was the cheer that kept on going, for every single runner.  I was very proud of Zack and his determination to help support this event.  He did an awesome job giving back to this foundation that has become very dear to us.

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Zack and Tate the Great.

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Zack and his cousin, Ronnie, after the race.

The last noteworthy thing that happened this past week is that Zack’s hearing is within normal limits for conversation.  With his history of hearing issues and current struggles in school, his Developmental Pediatrician wanted us to revisit his hearing and have another check-up.  The audiologist said his right eardrum could have done something better, but since he was hearing conversations well it was pretty much a non-issue. Therefore, I have no idea what the issue was as it has already been dumped from my brain.

As you can see, the world of Zack is looking pretty good at the moment.  We have passed the 5 months since his last surgery mark.  We are coming up on 4 months without an admission.  PICC line is out.  Sodium is detectable and even pretty great.  We have not been this stable for the past three years!  I have to say, we could totally get used to this!!

Hug your babies!

~ Dawn