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

Vacation and Boston

Oh vacation, how I have missed you so.  Our family had a great time visiting family in Connecticut, playing in Bar Harbor, Maine and exploring Boston between doctor appointments.  Here are some of our highlights:

Boating in Connecticut.  Zack’s first time on a fishing/lobster boat and he loved it!  He was a man of many questions and is forever bonded with Captain Don.

IMG_20160813_231343_01Zack helping Captain Don drive the boat.

IMG_20160813_162355656Jake and Jim could get used to Zack doing all the work.

IMG_6164Zack and his shark.  Not bad for a first fishing trip!

IMG_20160813_220526112_TOPThe Co-Captains relaxing after a hard day on the water.

Exploring Acadia National Park.  I am not sure how we have so few pictures of this.  Here are Jim and Zack on top of Cadillac Mountain trying to pick up one of the islands in the harbor.IMG_6152

Bar Harbor adventures.  Jim, Zack and I took a 4 hour sea kayaking tour.  See those islands in the picture above?  We paddled to the third and took a break.  Then we went around the third and back into shore.  We saw some porpoises and bald eagles.  Happily, we did not see any of the sharks that also inhabit the harbor because that would have freaked me out.

IMG_6118 IMG_6110We rode the carriage trails in Acadia National Park on bikes.  We ate popovers at Jordan Pond, frolicked on Sand Beach, drove around the entire island and shopped and ate and had a grand old time.  Zack and I also went on a date on Diver Ed’s boat.  Diver Ed scuba dives into the harbor and videos the ocean floor as he goes.  The video is broadcast on board.  Then he comes up with some of the creatures he finds down there and the kids get to touch them all before releasing them back to the ocean.  Zack was so enthralled with the whole thing until the touching part.  He finally worked up the nerve to touch a few things.  Can you tell how hard it was for him to do it?

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After a week of fun, we headed to Boston to see Zack’s doctors.  First we met with Zack’s surgeon.  It was strange to see her in a new hospital, but she was as awesome as ever.

While Zack is currently doing better than he has in years, we still have some concerns.  You may have noticed that I have been talking about how his stoma has been swelling which constricts his output during the day and then goes back to normal when he rests.  His surgeon and doctor here both feel he is prolapsing internally.  One thought is that where his stoma was stitched down internally actually worked this time, but his intestines before that point internally are still trying to get out.  We think they are getting stuck at that point, cutting off the flow.  Thankfully things have been resolving well so far, but it is not supposed to be happening.  We have a plan in place now for IF things go wonky.

Today we met with one of the leading pediatric motility experts in the nation.  He asked us lots of questions.  He said that Zack’s case is interesting because there is a lot going on that does not make sense….yet.  He is hopeful he can figure out what is happening with Zack.  He did say that just because Zack’s small intestine manometry test was normal does not mean his small intestine is functioning normally, just that things are being pushed through.  We talked about Zack’s biopsies that showed eosinophilic ganglionitis, the possibility of autoimmune issues and other things, but he wants to review all biopsy slides, testing, fluoroscopies, manometries, CT Scans…basically everything that has already been done…for himself before giving his opinion.  Jim and I appreciate that and think it is a good idea.  Of course, Zack’s files from both Cincinnati and Walter Reed are so incredibly large that it will take some time for him to get through it all.

The doctor said that there are several drugs we can try to help slow down Zack’s output.  He wanted to talk to his surgeon about a few things first, so we do not have a plan for that yet either.  Even though we left without a plan, Jim and I felt that he was very thorough and we really appreciate that he wants to understand why Zack’s body is behaving this way.  Why does he have secretory diarrhea?  Why doesn’t his colon work?  Is there also a problem with his small bowel?  All questions his other doctors have asked before and have not been able to answer.  Somehow I feel good about his method of investigation and have hope that perhaps he will be able to narrow things down a bit more.  It is good to have hope.

While we were in Boston we were able to connect with some of dear friends that we had not seen since 2011.  We spent a great day at their home catching up.  Why do we wait so long to do these things?  Oh yeah…intestines.  We were also able to see a friend from our time in Minot.  Her daughter has been in the PICU since DECEMBER!  December people!  I am happy to say that her daughter is getting close to getting out of the PICU and to finally going home.  It is amazing to see her faith and strength.  It was a blessing to me to be able to spend the evening with her.

So there you have it, an exceptionally long update.  We are so thankful for our vacation and our time in Boston.  We are thankful that we had a fun time as a family.  We are happy that we were able to come to Boston for a non-urgent visit.  We are happy to have scoped out the area, found a hotel close to the hospital and to know we have friends close by.  While we did not have time to see all of our friends here, we know we will be back! Until then…

IMG_6104Hug your babies!

~ Dawn

A Summer of Fun!

It’s official.  We are having a great summer!  Finally!  We have been having so much fun doing normal summer things, that I have not had time to update.  Now that is a problem I can handle.  I do not want to sound greedy, but I hope to have the same problem next summer and every other summer for years to come.

Remember Zack’s summer bucket list?  Learn to play tennis?  Zack worked hard all summer and can now actually hit the ball most of the time.  Serving is still in the infancy stage, but it involves multiple steps and movements and that has always been a challenge for Zack. This time I actually have some pictures!

IMG_6044Working on his forehand.

Zack and his amazing coach!  Mr. Brecker is our girls high school tennis coach. During the summer, he runs a great tennis program for kids in our area. He has the amazing ability to give meaningful praise to every child.  I believe this is the main reason Zack loves tennis.  He believes he can do it even when it is hard and his body doesn’t cooperate like the other kids because Mr. Brecker believes in him.  You know I love that!

IMG_6072End of season award for working so hard on his serve.  He loves his new “Sport Glasses.”

Zack FINALLY began karate a few weeks ago.  We had been trying to get started for a few months, but had a few obstacles in our way.  Once we got those resolved, Zack was thrilled.  The most exciting part for him?  His uniform.  He has been wanting to be in a sport so he could wear a real uniform.  It is always great when a dream is realized.  Especially when you are nine!

IMG_1806IMG_1808Another dream our boy had was to learn to climb a tree.  We found a tree with a low branch.  He got up on it and felt pretty cool.  He thinks we need a tree house in our yard now.  Too bad our trees are still too little….or maybe that is a good thing!

IMG_6076We are leaving soon for our first vacation in three years.  You’ve heard me say that a few times now, but I keep on repeating it.  Three years, people!  We keep on pinching ourselves.  We are thrilled Zack is finally well enough to do this.

While things are infinitely better than they have been, we are still watching the normal bothersome issues.  Zack’s sodium levels continue to be a pain.  They are low again this week, but that is most likely because his output was crazy this week.  We are so happy that Zack’s doctor’s discovered CeraLyte.  I believe that CeraLyte has helped keep Zack out of the hospital these past few months.  We seem to be able to manage his sodium even though it is still low.  Zack’s doctor frequently checks his labs to make sure he is safe.  We still do not know why his stoma loses so much fluid daily.  It would be nice to figure that out one day.

We are still dealing with his pesky stoma swelling and constricting his output.  Things are still manageable, so I am trying to relax about the whole thing.  Note I said trying.  I tend to get freaked out when hours go by without output and when his stomach is no longer soft.  It is really hard for me to imagine this will not get worse, but so far things are resolving with rest.

I guess with all chronic illnesses, finding ways to manage things is key.  I feel like that is what we are doing now.  I much prefer managing things to going from one crisis to another.  Score one for Team Penrod.  It’s about time.

Now, about that vacation…..

Hug your babies!

~ Dawn

 

 

Zack’s Summer Bucket List

Time for summer vacation with a HEALTHY boy!  Yes, I wrote that.  No, I am not worried about jinxing Zack.  I mean, we still have to track his sodium every other week, but that is a piece of cake.

This is the first summer we have had in recent history with the very real possibility of making plans and having them actually happen!  I had Zack make a list of things he would like to do over the next few months.  I’ll share them with you in a bit, but first an update on Zack’s medical stuff.

Zack’s sodium level continues to be detectable with an odd off week every now and then.  His stoma is behaving, mostly…We are watching a rather new development.  While Zack is not prolapsing, his stoma is swelling with exertion and is painful again.  Zack has begun assuming his pain position when this happens and also asks for Motrin more regularly.  When his stoma swells, his output slows way down.  Happily, his output starts back up again once he actually relaxes.  I know I always say his output is too high and now I am complaining about it slowing down.  The problem is that his output is artificially slowing.  It is slowing because his stoma is swollen and blocking the flow, not because it is actually doing what we need it to do.  Jim and I are not overly concerned yet, but we are definitely keeping an eye on the situation.

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The famous pain pose.

In addition to Zack’s medical update, I have a school update.  Zack had a big neuropsychology appointment at the Kennedy Krieger Institute today.  Zack underwent 5 hours of testing, and we received some interesting news.  Zack’s cognitive ability is significantly higher than his performance in school.  The doctor (PhD, not MD) believes that his cognitive ability is strong enough to be able to graduate from high school, but he will continue to require special attention.  We also know he’s not crazy, we had him tested.  I do not have the official written report yet, just what Jim and I wrote down and our memory of what was said.  Because of that, I am afraid to write more about it as I might get the terminology wrong or say something incorrectly.  You will just have to stay tuned for a more precise update later.

Now, about that summer list.  I love my Zack.  His list makes me giggle.  One week into summer and he has already accomplished almost everything on his list.  I might have to help him think of more fun things to do.  I keep saying this is the summer of Zack!

  1. Get socks without holes.  Um, child, if you put your shoes on before going outside as directed, your socks would last a LOT longer.  Just sayin’.  The boy now has many pairs of socks without holes.
  2. IMG_1621Learn to swim and go to Aunt Becky’s to swim lots of times. Technically we are still working on this, but he is in swim lessons so I count that as being done.  All he has left is to learn to breathe.  You know, the most important part of being able to be in the pool without your parents.
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  3. Play tennis.  Tennis lessons began last week and Zack actually hit the ball several times –  in the same lesson.  That is a huge improvement from last year.  AND he actually paid attention to his coach during listening time.  Score!  Sadly, no pictures.
  4. Go bowling.  We learned that Zack is a bit OCD about color coordinating bowling balls on the racks.  Who knew?IMG_5915
  5. Play WiiU.  Bribery for good behavior wins again here.  Zack got a new game for behaving exceptionally well today during his hours long testing.  That is pretty hard to do when you have a pretty good case of ADHD and your meds wear off.
  6. Go to the library.  Zack signed up for the summer reading program and is eagerly reading to earn tickets for raffle items at our library.  Bribery really works for this kid.
  7. Get a puppy.  Well….now here is one that we have not yet accomplished.  BUT since Zack is doing so well medically, we are actually in the process of figuring out the puppy situation for either the fall or spring.

There you have it folks.  I am enjoying posting happy things.  I would really like to make that a habit.  Are you listening stoma?  I am enjoying having my boys home for the summer.  Most of all, I am enjoying having a healthy Zack and hoping it continues!

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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

 

 

Special Olympics 2016 – Part 2

I promised my family more pictures of the Special Olympics.  I promise I have plenty.  First, let me lead with this awesome news.  Zack’s urine sodium level was 141 this week.  That is pretty spectacular considering how incredibly long Zack’s level was less than 10.  It is so good that Zack’s doctor is just about ready to pull his PICC line!  Zack still needs a bit of convincing.  He is worried about getting sick again and having to be “stuck a thousand times”.  The promise of being able to finally run around and climb at recess, learn how to swim, take karate lessons and enjoy an actual bath again are starting to win him over.

Now about those pictures…

Zack and the long jump.

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ReadyIMG_0977

Jump!

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Nailed it!

IMG_0910Anxiously awaiting his medal. His lips even match his shirt.  He goes all out for fashion.

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Is there anything better than getting your medal from an actual policeman?

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Each child is assigned a buddy and this year Zack’s was Chailey.  She was amazing with Zack.  Here they are running the 100-meter dash.  Zack is being congratulated by his classmates.

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Chillin’ with some of his cousins.

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Another awesome cousin.  Zack had quite the cheering section.  Grandma and Aunt Becky were there as well as several friends.

Freedom Elementary School Students cheer for their classmate at the Special Olympics at Westminster High School on Wednesday April 20, 2016.KEN KOONS/STAFF PHOTO / Carroll County Times

My favorite photo of all was taken by the Carroll County Times.  Zack’s school sent the entire second grade to cheer for him.  I absolutely love this photo.  It makes me smile.

I hope you enjoyed the pictures.  I also hope these pictures make you want to head out to the Special Olympics next year.  Whether you volunteer to help with the event or come out and cheer for your favorite athlete, I promise you will leave with a smile on your face!

Hug your babies!

~ Dawn