July 2018 Update

Time for a Zack update.  I’m tired, so I don’t know how fun this will be to read.

For the past few weeks, Zack’s belly has been hurting.  While Jim was away Zack had two episodes of pretty intense pain that were fairly short in duration.  He was having his usual lack of output during the day along with a swollen stoma and prolapse thrown in to the mix.  Adding to the fun was a lump that randomly appears next to his belly button.

This face is Zack’s pain face.  It kills me.

The lump…sometimes it is on the right, sometimes on the left….

Additionally, Zack has been suffering from some pretty intense anxiety.  He is worried about dying at night.  The worry is so great that it keeps him from falling to sleep.  Seeing him so scared and being unable to calm him is pretty hard.

Last week Zack had a hard day with belly pain, distension and lack of output.  He thought he needed to be hooked up to his feeds because he was soooo hungry.  Turns out he actually had a belly ache.  Once we attached him to his feeds, he began crying in pain. Jim and I felt he was OK and got him ready for bed and then things went a bit wonky.  Zack was so upset about dying, convinced he was low sodium and worried about his belly that he actually asked us to take him to Walter Reed.  Zack NEVER asks to go to the hospital.  Jim and I were still not positive he needed to go but, because Zack is almost always right, off we went at 11:30 at night to the ER.

Zack did well until the staff began discussing getting blood for labs and then angry badger made an impressive return.  Jim says angry wolverine is a more accurate description.  Jim needed to restrain him.  The staff discussed giving him ketamine or ativan to calm him down.  I left the room because it was too upsetting to see him like that.  The staff and doctor were so incredibly kind and tried really hard to help Z feel more comfortable.  After about 45 minutes of fighting, Zack was able to calm himself down and no ketamine or ativan were needed.  He was then able to ask the nurse if she could use a butterfly needle to get his labs and even helped her find the best vein.  All labs and x-rays came back within normal limits.

The doctor said that his belly symptoms were consistent with an intermittent obstruction.  These happen to him most days, but this one was particularly painful and his belly was distended making it a bit more intense than our average day.  As soon as his output started back up he felt much better.  Also typical for him.  So basically, more of the same crazy we have every day with some major anxiety added on top for fun.

The next day, Zack’s GI doctor and I spoke.  We know that Zack has narrowing near his jejunum and another 20 cm in from his ostomy.  We know that surgery would probably fix that issue, but not address the underlying issue – which remains unknown.  Given his history and our desire to NOT have more surgery, he came up with a three-part plan to try to help Zack.  The plan is not found in any medical textbook as we are trying to find things that work specifically for Zack’s “unique” body.  The first idea was to try to simulate the relief Zack seems to get with barium by essentially doing a Miralax cleanout once a week.  We are on our second attempt and the reviews are mixed.  Barium seems to give Zack relief for about a month.  The Miralax lasts about a day.

We did not see any improvement the first week.  Zack’s belly hurt the very next day and there was not any real noticeable difference in his output.  We gave Zack his second dose this past Sunday and still did not notice much of a difference.  Zack’s stoma has been just as swollen and his belly still hurts.  However, although his output was still low today, he actually had output.  Zack also asked us to give him more Miralax to help his belly feel better.  So, maybe there is hope?  We will continue this for a few more weeks.

If the Miralax trial does not do the trick, our next step will be to try to stent open his stoma with a red rubber catheter.  Of course, Zack would need some sort of light sedation for that and well……

How would you like that inside your intestines?

Our third option is to do more scopes and get full thickness biopsies to look once again for eosinophils.  If we find those again, we would do a trial of steroids and if we see improvement in his belly, redo the scopes to try to prove the steroids are helping.  There is much more to all of that, but the gist is to try to figure out if we are actually dealing with eosinophilic ganglionitis. Yes, we have been trying to do that for a few years, but were waiting for Zack to be a bit sicker.  He still is not really technically sick enough, but it is time to try.  Isn’t that nice?

In the meantime, Zack’s anxiety has been getting worse.  As I said before, Zack has become so worried about dying that bedtime is just not happening.  Jim and I found ourselves getting upset with Zack and frustrated with our lack of sleep rather than seeing that our child was/is actually really scared.  Today we met with his psychologist and had a telephone consultation with his developmental pediatrician.  Jim and I feel much better after speaking with the two of them and have a new game plan there as well.  Starting tomorrow we will be switching up some meds and adding some new ones.  We are also working on ways to reassure him, working on ways to help him process his thoughts and feelings, and working on ways to help distract him from those moments which are overwhelming.

Zack has also rekindled his love of watching Miracles From Heaven.  It is a movie about a little girl with intestinal issues that are different from Zack, but similar in many ways.  He seems to really like seeing her get an NG tube, a feeding tube and, of course, seeing Dr. Nurko make a cameo apperance.  He wanted to know why God healed her and if He could heal him.  He also started asking me questions tonight about what happens when you die, if you still have a family in heaven and how God heals you in heaven.  While those may seem like heavy questions for an eleven year old, I prefer to see it as a good sign that we may finally be getting to the root of his anxiety.

I have several friends with kids who are chronically ill.  They have reached out to us and I cannot tell you how much that means to us.  While I am sad to learn that their children also suffer from anxiety over medical issues, it is nice to know we are not alone….because in the middle of the night it sure feels lonely.  I hate that kids who are sick struggle with these issues.  AND I am also so grateful that the doctors who care for them take this seriously and are compassionate and kind.

Lest you think all is doom and gloom around here, Zack does have some fun things happening.  His Aunt Carie is in the States for a few weeks and we have some shenanigans planned with her.  Tennis is in full swing (ha!) and Zack has actually been hitting the ball OVER the net this year.

Our neighborhood is full of boys and Zack has been enjoying playing with them and I love watching that.  Captain Awesome is set to start some new training to hopefully learn how to be a support to Zack and Z is thrilled about that.  We have also managed to hit two carnivals this summer.  At the last one, Zack met up with his cousins and that always make him happy.

Zack with Kelsey (in white).  She’s pretty great.

Tonight we made a new summer bucket list and we hope to start marking things off.  High on his list are going to the beach, making slime, going to Hershey Park and playing with Jake.  We still have another month to make all of that happen, right?

Hug your babies!

~ Dawn

 

Doctor Visits, Puppy Updates, and Zack!

Hello Blogosphere!

It has been so long since I have updated that I feared I might have forgotten my password.  In reality, I have been struggling with if I want to continue to update this site while Zack is doing well.  It takes time and brain power and there is just so much one can talk about when life is humming along.  But then I remembered that the reason I started writing in the first place was not just because of Zack’s colon.  Rather, I started writing to share our experiences of working through life with a special needs child and everything that entails.  My hope was that someone might stumble across this blog and find something helpful in their own journey.  Zack’s colon just turned out to be an attention hog and shut out the other areas that make our life unique. Even though things are a bit calmer on the colon front at the moment, I still have things I want to share about navigating through this crazy special needs world.  So, for now, I have decided to type on…..

When I last posted at the end of September, Zack was getting ready to have some doctor appointments.  His first visit was to his Developmental Pediatrician.  Jim and I always have a lot of questions for this particular doctor.  I mean, she is the expert and we crave information. Information is power, right?  Except when there are no clear-cut answers.  Just like with his colon.  I just cannot let that be. It’s a character flaw I suppose.  Or just another way I am learning that in somethings only faith can give me peace.

At this particular visit, we discussed once again how Zack’s uniqueness is most likely linked to his chromosomal abnormality.  Because there are so many aspects of his body that work differently than his typically developing peers, this makes sense to us.  We also talked about the dreaded questions.  What will Zack’s life look like when he is no longer a child?  Will he be able to graduate from high school with a diploma or a certificate?  Will he be able to live independently?  Will he be able to handle bills?  Will he be able to have a family?  Support a family?  How do we plan for all of these different scenarios?

The answers to those questions are not ones I want to share here.  I do not believe in sharing predictions about my son’s future at the tender age of ten.  Rather, I want to allow him to grow on his own and let his body and brain (and God) decide how his story will play out.  But I am still a planner and a realist, so we talked about ways to help Zack develop into the best Zack he can be.  We discussed ways to help him become more independent and some important life skills that we need to work on in the next few years.  We talked about services that are available to families with kids who have special needs and how to apply for them.

One of those services is a grant program called LISS or Low Intensity Support Services.  This program provides funding to children with severe chronic disabilities, both developmental and physical, that are likely to continue indefinitely.  We were able to apply, but sadly were not chosen to receive the grant.  The selection process is completely random, by design, and occurs twice a year.  We plan to apply again in the spring and are crossing our fingers that we will eventually be selected.  The grant can be used for things like respite care (Oh, to dare to dream..), social skill opportunities (karate), medical equipment and other things.  We have been eligible for this grant all along and did not know it!  The important thing is we know about it now and that is why I am sharing it here.  Maybe someone else can benefit from this information as well.  It may just be a Maryland program.  I briefly researched this (like looked at one google search page) and could only find information about our state, but I’m betting other states have a similar program.

When Jim retired from the Air Force, we lost our respite care benefit.  We have wonderful health care overall.  I feel guilty even complaining about respite care.  However, Zack’s care is a bit tricky and not many people are comfortable caring for kids with ostomies and g-tubes.  Even family members who love our kiddo have to team up to help us as it can be overwhelming for one person to figure things out.  If we are lucky enough to eventually be selected for this grant, Jim and I might even be able to leave Zack for more than a few hours. Life goals…..

Zack also had a check-up with his GI doctor and things went really well.  Zack really likes going to Walter Reed and seeing his favorite doctors, nurses and social worker.  We learned that Zack’s weight has plateaued this year.  While that is not ideal, he has grown two inches in height which indicates he is doing better.  Jim and I are once again grateful for Zack’s g-tube as we can play with the amount of formula we give him overnight to encourage more weight gain.

While we were in with Zack’s doctor, a new GI fellow popped in to say hello.  Zack did not recognize her and, in true Z fashion, asked if we knew her.  It was a bit embarrassing, but she was very gracious.  She told Zack that she used to help take care of him on the ward as a resident and that he inspired her to go into Gastroenterology as her specialty.  I guess she really said that my pictures of his 9″ prolapses inspired her, but we will just go with Zack’s cuteness inspiring her.  Hearing that was such a blessing.  Knowing that Zack’s illness helped someone decide to want to help children like Zack…..it was very humbling.  Hopefully one day Zack will understand what that means as well.  Who knows, maybe she will be the one to finally figure his intestines out.

Several other great things came from our visit that day.  First, Zack was able to get his blood work done in the office with minimal fuss.  He was apprehensive and a bit uncooperative at first but, once he remembered that he would be rewarded for doing a good job, he held it together and even helped the nurse find his “good vein”.  This is a huge improvement and something we have been working on weekly at therapy for over a year.  Secondly, because we are managing so well at home we do not need to go back for 6 months!  Six months people!  I do not think this child has gone six months without being seen for GI issues since he was two years old!  It may even be longer than that!

November was a wonderful anomaly around here.  Zack did not prolapse once.  He did not have any obstructive episodes and needed minimal pain medicine.  This must be what “normal” ostomies are like.  It was delightful.  For the past two days, however, Zack is once again asking for Motrin and Tylenol for belly pain, not eating his breakfast or lunch and going back to his belly baseline.  Thankfully, the obstructive episodes and prolapses have not yet returned.  Fingers crossed….but we expect they will be back soon as well.

Now for the fun stuff.  Because Zack has managed to stay out of the hospital for quite some time now, we decided we needed a little more excitement in our lives and added a new family member.  I introduce to you, Captain Awesome Penrod, our new Golden Retriever puppy.

He’s a big, smushy, furry ball of love AND teeth.  Let’s not forget about those puppy teeth.  I hope that it is obvious that the small blonde one named the pup.  We could not talk him out of it and then the name just seemed to fit – both the dog and Zack.  We call him Cap and our vision for him is to train him to be a therapy dog and to one day be able to take him to visit children in the hospital.  Therapy dogs make/made such a difference for Zack and we would love to give back in that way.  He’s a pretty mellow pup, so we are hopeful.

We are also hopeful that Cap will help Zack with several things.  First, we hope that Cap will help Zack with his anxiety.  We have found a few people who are willing to help train Cap to recognize when Z’s anxiety is ramping up and to help calm him.  Of course, Cap will need to be much older than three months to start that training.  Second, we hope that Cap will be a good companion for Zack.  Third, we hope that our pup will help nurture Zack’s sense of responsibility as he learns to care for Cap.  No pressure, pup, but we expect great things from you!

In addition to the excitement of our new puppy, we also have a new celebrity in the house.  Zack made his TV debut tonight.  Take a look!

As the Christmas Season rapidly approaches and all of my cards are sent and all of my shopping is done (in my dreams), I am stuck by how lucky we are to be in this season of relative good health.  It has been a long road of illness for Zack and I am so incredibly thankful to have a Christmas where we can all relax and not worry about hospitals.

Although this year is a good one in our home, I cannot help but stop and think of some special friends that are struggling this year.  I think of our friend, Jim, who went to heaven just a few days ago after a long medical illness and his family who will have their first Christmas without him.  I think of our friend, Emmy, who just went through her second bone marrow transplant and is hoping to be able to be home for Christmas.  I think of our friend, Ryan, who is kicking cancer’s butt and just entered the land of ileostomies.  I think of my friend’s daughter whose family is trying so hard to find answers to her intestinal issues.  I think of our friend, Kayra, who lives in Turkey and has been sick for so very many years and just wants to be a little boy.  I think of my friend, Stephanie, who is missing her beautiful boy, Logan, as the one year anniversary of his passing is quickly approaching. I think of one of Zack’s doctors whose son passed away.  While Christmas is and should be a joyful remembrance of Jesus’ birth, my heart is heavy with prayers for my friends and I am reminded that, for some, Christmas can be a hard time of year.

Wherever this Christmas Season finds you, I hope that you will find the time to slow down and treasure all that is important to you and that you find time to hug your babies!.

~ Dawn