Dawn of a new era…

My sister and my friends (and Jake, mostly Jake…) are moving me into the 2010’s. They tell me I need my own “domain name.” Basically, I will own the location of my blog. So please continue to follow me over at http://www.crazymessylove.com and follow our journey through to the light at the end of the tunnel.

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This hilarious picture was created by the lovely folks over at scotsmind.com

~ Dawn

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And Now We Wait….

Today was a long day.  Jim and I woke at 4:30 to get ready for our day.  We woke Zack up at the last-minute so that there was a chance he might actually fall back to sleep in the car.  Sadly, his wafer was leaking and we had to scramble to slap a new one on as fast as we could at 5 a.m., hop in the car, and pray we did not encounter any traffic delays on this rainy morning.  I am happy to say that the traffic was good, Zack snoozed a little, and we made it on time.

When we arrived, Zack walked into the building without a fuss.  He did need to take a few “breaks” to “rest”.  He started to get a little bit antsy as we walked down the final hallway.  He was dragging his feet (literally) and requiring a bit of cajoling, but then he saw our social worker waiting at the end of the hallway.  Ms. S told Zack she had a surprise for him and that helped him forget that he was scared.

The APU (Ambulatory Procedures Unit) was ready for Zack and had been told about his anxiety issues.  In the past when Zack has been in this unit, he has been given a chair-bed in a semi-open bay with a curtain for privacy.  This time, he was given his own room.  I was relieved and impressed as I did not know those were even an option.  The room looked similar to the rooms Zack is used to on the pediatric ward and I think it helped him feel more at ease.  As we were getting settled, Ms. S gave Zack the surprise – Night Vision Goggles!  He was pretty excited!  They started our day off right and were lots of fun.
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Turning off all the lights to try out the night vision goggles.

Zack did a good job of letting the doctors know that he wanted us to speak about him outside of his room.  I was proud of him for being able to express himself so well.  When anesthesia came, I was happy to see that we were assigned a doctor who has worked with Zack many times.  He arranged to have Zack sedated in his room and taken to the procedure room on a gurney.  Zack was not happy when the doctor came into the room and we told him we needed his PICC line to give him some Versed.  He fought us for about a minute as the medicine went into his line and then went out pretty fast.  The doctor quickly got him on the gurney and hooked up to leads and oxygen and off we went.

Things went well during Zack’s procedures.  The PICC team decided that they wanted to put a completely new line in his other arm.  They felt that his original one had been in place long enough and the risk of infection warranted a new site.  Because his scopes were being done on his intestines, the PICC line was changed first as it needed to be a sterile procedure and intestines are most certainly not sterile.

After the PICC placement, Zack had his scopes.  The original plan was for Zack to have an upper endoscopy with biopsies, a pancreatic stimulation test, and biopsies taken through his ileostomy.  The doctors decided that since he was already sedated they wanted to look at his colon as well.

The main reason for these scopes was to try to see if the doctors can narrow down the reason for Zack’s high output and sodium loss.  They tested to see if Zack has a disaccharidase deficiency.  I believe that disaccharidases are enzymes that break down complex sugars into simple sugars so that the intestine can absorb the nutrients.

In addition, the team took some biopsies to look at his cells under great magnification called electron microscopy in both his duodenum and ileum.  This is a type of microscope that uses a beam of electrons to create an image of the specimen. It is capable of much higher magnifications than a regular microscope and allows very small objects to be seen in finer detail. They looked at his esophagus, stomach, duodenum and ileum.

Next, they performed the pancreatic stimulation test.  This test was done to see if Zack’s pancreas is working properly.  Somewhere in the midst of all of this, they checked his electrolytes in both his blood and urine.  I am happy to report that his sodium level is holding steady.  His urine sodium is low, but detectable for the third straight week.  That makes me happy because it takes a LOT of effort to make this happen.  They also took blood to test for something called CDG or Congenital Diseases of Glycosylation.  We will add all of the tests taken today to the list of over 30 other things he has been tested for these past few months.

Zack did well through all the testing.  The doctor reported that everything looked normal. That is the way things go for Zack.  Things always look great internally, but clearly there is something wrong.

When Zack got to the recovery room his nurse noticed that he was having PVC’s (premature ventricular contractions) on his heart monitor.  Nobody seemed overly concerned, but in all of our time in the hospital, we had yet to see that.  I asked why that might be happening and one explanation offered was dehydration.  We asked to see what his blood work showed and saw that his electrolytes were great.  When Zack changed positions, the PVC’s stopped.  People then began to wonder if his PICC was in the correct spot.  An X-Ray showed all was well.  The PICC team said it could be that in the position Zack was in the tip of the PICC could have been touching the top of his heart and that can cause PVC’s.  Once we were home, our nurse called to say that radiology reviewed the film and wanted his PICC pulled back 1 cm.  Our home health nurse will come tomorrow to change Zack’s dressing and adjust the line.  Hopefully, that will take care of the issue.  I doubt we would be able to tell either way, but I think I will feel better knowing it was done.

Once we were discharged, Zack was very excited and chatty.  He told us in a very excited voice that he was “so happy that my procedure is done”.  He was visibly relieved.  As he went to bed this evening we were able to talk about all of the things he did to help calm himself.  We talked about how proud we were of the way he conducted himself.  I hope that one day this will translate to all of his hospital experiences.

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One relieved boy.

So now we wait, again.  We are getting pretty good at that.  Most of the tests performed today will take one week or more to complete.  The majority of the results from previous tests, with a few exceptions, have come up negative or normal.  Although this can be frustrating, each bit of information helps the doctors revise Zack’s treatment plan and get one step closer to figuring this thing out.  Patience….

~ Dawn

Procedure Time Again

Tomorrow morning Zack will head back to the OR for a few minor procedures.  As you know, Z is not a fan of anesthesia and has already begun to work himself up.  He has been telling me that he is not brave enough and that he does not want to “do this again”.  I can’t really blame him.

Zack has been working for some time with our hospital social worker on his medical anxiety issues.  During his last hospital stay he was able to verbalize how he was feeling and things went pretty well.  Tomorrow Ms. S will meet us at the hospital to help Zack get through the day.

Zack’s procedures should not take too terribly long and we anticipate being home by early afternoon.  General anesthesia makes him a bit loopy and wobbly, so he will be hanging out at home on the sofa for the rest of the day.

I am planning to update the blog tomorrow with more details.  For now, we appreciate prayers for Zack and his anxiety.  A peaceful morning for him would be awesome!

~ Dawn

Zack’s New Plan

Now that we are back home and getting used to being in a routine again, I finally have time to update this site.  Zack was very excited to come home and giggled when he climbed into his bed.  He said he missed his pillows and his cozy sheets.  I felt the same exact way.  To make our first night home even better, Zack slept through the night for the first time in months.  I am pretty sure I heard rejoicing in the heavens…or that just might have been me.

While Zack was in the hospital, the doctors told us that it was time to start looking at some more obscure things.  I guess doctors have a saying that goes something like, “Don’t go looking for zebras.”  Meaning, don’t go looking for a complicated illness when a more common one is most likely.  The attending pediatrician on service this past week is a GI as well.  We have known him since 2013 and have great respect for him.  During rounds he told us that it is time to start treating Zack like an albino zebra. He said that Zack has been “medically brittle” for a long time and on the brink of disaster for months.  It is time to start digging deeper to see if we can come up with some reasons for Zack’s super high output and sodium losses.

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Big brother helping Zack be brave for his PICC dressing change.

Walter Reed and Cincinnati shared testing information so that we do not have to repeat a bunch of tests.  The doctors here came up with some new things they would like to investigate.  One thing they are considering is the possibility that Zack’s intestines are not processing sugars correctly.  This is all new to me, so it is quite possible that I am getting things wrong here.  They want to make sure his pancreas is functioning well and a few other things.  They said many things.  My brain was tired.  I cannot remember it all.  I need a secretary.

One of their plans was to have Zack undergo another endoscopy while he was in the hospital.  Sadly, he had a pretty good cough and anesthesia is never a good idea when you have a cough.  We will schedule that in the next few weeks.  During the scope they will take tissue samples from a variety of places.  I know they will be looking closely at the villi to see how certain enzymes are being processed.  They want to magnify tissue to many times greater than a normal biopsy to see the arrangement of cells.  They also talked about getting something from his bile ducts.  Again, I need a secretary.  If I come back in a few weeks and write something completely different, you can assume I had this wrong…but I am fairly confident at least some of it is correct.

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Zack’s high output also causes him to lose a lot of sodium.  I always knew low sodium (hyponatremia) could be an issue, but I did not realize just how dangerous it can be.  Because Z’s levels have been low for so long, we spent a lot of time in the hospital getting his levels back to normal.  In an effort to keep them normal and prevent such big fluid losses, his doctors have suggested putting him on CeraLyte 70 as his primary form of liquid during the day.  CeraLyte is a oral hydration therapy and comes in several different strengths.  In addition to using CeraLyte 70 for daily hydration, they sent us home with “rescue doses” of CeraLyte 90 to give through his g-tube when his output is really high until we can get him in for labs.  From their literature:  CeraLyte 90 is for severe diarrhea and dehydration–where fluid losses are high–such as in cholera or with short bowel or ileostomy.  Who knew this was a thing?  Why didn’t anyone know about it before?  So many questions…

All of that sounded great when Zack was in the hospital.  And then we came home and actually got the product.  Our home health company could only send the natural flavor at first and let me tell you…it is not something you can sell to a kid as something fun to drink.  While we can give it through his g-tube, Zack likes to drink and if he cannot have anything else all day it isn’t going to work.  Actually, he can have 6 ounces of another liquid, but have you seen ever measured 6 ounces?  I’m pretty sure we will have a mutiny on our hands.  We will see his GI on Monday and talk about the plan and see if we can turn it into an executable one.

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Zack and Aslan.  Quite possibly the most awesome dog in the world.  By the way…Zack is 49″ tall, so that is one big puppy!

The good news is that Zack’s sodium levels were all in the normal range when we left the hospital on Tuesday.  That was the first time that has happened in months.  He feels great and is back in school.  Speaking of school, Zack received his new laptop today and, even better, they trained me on how to use it.  I am pretty sure I needed the training more than Zack.  He is so excited to have his own computer.  He has already mastered the Kurzweil reading program and is enjoying The Lion, The Witch and The Wardrobe.

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Trying out his new laptop.

As you can see, things are getting back to normal around here.  We are so grateful for all of the people who helped us get through the past two weeks.  To all of our awesome neighbors, thank you for helping Jim keep Zack stable and for transporting him to the hospital.  To all of our awesome hospital friends, thank you for taking such good care of Zack and of me.  To our friends and family, thank you for checking on us, visiting us and bringing us food.  You all rock!

Hug your babies!

~ Dawn

The Family Plan

If the forecast calls for a blizzard, you might as well plan on some Penrod drama.  During the height of the Blizzard of ’97 in Colorado Springs, our son, Jake, decided it would be the perfect time to enter the world.  The fact that every blasted thing on base was closed, the streets were impassable and the hospital said not to leave our house made no difference to him.  Happily, everything worked out and Jake was delivered safely.

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Ten days ago as the forecast was predicting the Blizzard of ’16, I thought that I had food poisoning.  After 24 hours of that fun, Jim decided I needed to go to the hospital.  I figured it was either that or death, so I took my chances.  Turns out I had a partial small bowel obstruction.  I assure you, the irony was not lost on me.  The hospital admitted me, Jim made sure I was settled in my room and that I was, in fact, not going to die or need surgery right that minute and hurried home to beat the storm.  Zack requires a lot of maintenance on normal days, we did not want Jake to try and take care of him during a blizzard.

Saturday as I was in my hospital bed realizing that Zack is much stronger and way braver than I, my phone rang.  Jim was calling to ask me the phone number of our friend who happens to be a physician.  Um…. Jim does not worry.  Jim does not freak out.  Jim NEVER calls the doctor.

Turns out Zack was pretty darn sick.  He had a little stomach bug overnight and woke up lethargic and looking pretty awful.  After watching him for a few hours and watching the snow falling faster by the minute, Jim started to realize that Zack needed help.

Our friend, Sarah, soon arrived and took Zack’s vitals and they were not great.  I guess his heart rate was in the 140’s and his systolic pressure was 50.  She called the paramedics to see if it would be possible to get some IV fluids and some Zofran for Zack (thank goodness Z has a PICC line).  Normally, the paramedics would not do that without transporting Z to the hospital, but the blizzard was pretty bad.

When they arrived, the ambulance got stuck in our neighborhood.  We live in a great subdivision and word got out that we needed help and soon many neighbors were digging the ambulance out and sending it on its way.

Sarah stayed with Jim and Zack until she was sure everything was going better.  Jim put Zack to bed and all was well until Zack climbed into bed with him around four in the morning.  Jim said that those were the only steps Zack took during this whole time.  In the morning, it was obvious Zack was not doing better.  Sarah came back down and she and Jim decided that Zack needed to get to the hospital.

Once again, our neighbors came to the rescue.  One of our neighbors has a snow-worthy truck and he volunteered to drive Jim and Zack to the hospital.  That was a big deal because our hospital is over an hour away in good conditions.

Back to my story.  I was trying hard not to get too worried, but Jim had sent me a picture of Zack and I knew he was bad.  The nurses on my floor allowed me to go down to the pediatric ward to see the nurses there.  Because Zack has been in the hospital a lot these last few years, the nurses there are our “hospital family.”  They were awesome and talked to me and helped calm my fears.

Interestingly, one of the surgeons on my team was Zack’s surgeon’s resident for his first two surgeries in 2013.  I told him what was going on and he made sure that the Emergency Department knew Zack was on his way.  He arranged for me to have a hospital pass to leave the floor and meet Zack and Jim when they arrived. He also arranged it so that I could stay with Z in the PICU.  My nurses even came down to the PICU to take my vitals and bloodwork so that I did not have to go back and forth.  I cannot even begin to tell you how amazing that was.

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Getting an X-ray in the Emergency Department.

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Two of Z’s amazing PICU nurses.

Zack was admitted with a very low sodium level and dehydration.  We would later learn that his sodium level was probably not quite as bad as we originally thought.  We could tell that from some later tests, but it was still not great.  While he was in the PICU, he was able to see President Obama land on Marine One at the hospital and thought that was pretty cool. He was soon transferred to the regular pediatric floor and has been there ever since.

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Puppy therapy makes everything better!

I’ll save that story for another day.  I will tell you that he is still in the hospital and doing well.  The doctors are working hard to get his sodium levels and output under control and investigating a few other things.  We anticipate that he will be coming home in the next few days.  I am not able to update this blog there because my computer will not connect to their wifi and the wifi on the pediatric floor stinks.  I promise to update more once we are home again.  Until then…

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Hug your babies!

~ Dawn

Two Weeks Later…..

A lot has happened in the last two weeks.  We traveled home from the hospital, enjoyed Christmas, visited family, celebrated New Year’s Eve, Drew’s birthday, had a few doctor appointments and went back to school.  Whew.  So today when Zack was complaining that he was overdoing it and that his belly hurt and that he needed to come home from school, I thought he was just whining.  I honestly thought surgery was more than three weeks ago, not just a bit more than two weeks ago.  I left him at school with those big baby blues crying big ol’ crocodile tears.  It was hard, but I knew he could do it.  Nice, huh?  I am not completely heartless, though.  When he called later in the day, I did go and pick him up.  I am pretty sure I’ll be winning awards.

A few pictures of the aforementioned things….

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While we were in Cincinnati, Zack’s schedule at school was changed.  Instead of having three separate special education teachers, he now has just one dedicated person working with him.  The school hopes this will help Zack transition into “work mode” more quickly and allow for more actual instruction time.  When three different people work with him (in addition to his classroom teacher), time is spent figuring out how he is doing health wise and what his mood is before settling into the actual work. This impacts the amount of instruction time he receives.  It is also hoped that having just one person communicating his needs with his classroom teacher will help with planning for Zack.  When there were three teachers involved the planning logistics were much more complicated.

I think this change probably played into Zack’s tears today.  He usually loves school, but he also loves his schedule and his teachers.  I am wondering if he was just a little bit sad and/or nervous about the changes going on and quite possibly still just feeling a little bit tired from all the healing going on in that little body of his.

With all of Zack’s absences AND his actual learning difficulties, he is just not closing the gap as much as we would like.  Zack has a wonderful brain.  He is a smart guy. He can tell you more about the human body than most kids and many adults.  His vocabulary is impressive.  However, reading is hard for him and that is a pretty important skill.  Writing is physically exhausting for him.  The school is working hard to help Zack catch up before third grade where things get even more intense.

We met with Zack’s administration yesterday to go over all of these things.  I appreciate the time they took explaining it all to us. We also went to the hospital for Zack’s blood draw, met with his hospital social worker to work on medical trauma issues, had a PICC line dressing change here at home AND celebrated Drew’s birthday  It was a pretty full day.

It was also one of those days where I realized that I am not Super Woman.  I made a mistake in his blood draw appointment ( I NEVER do that, seriously, NEVER). I cried during the meeting with his administration ( You know I HATE that). I almost forgot to wrap my child’s birthday presents (I LOVE celebrating birthdays) and I ended the day with a killer headache.

I had to stop and admit that sometimes life can be a little overwhelming.  I had to admit that Zack does have a lot of different obstacles in his life and not just medical ones.  I also had to admit that sometimes I try to minimize how hard things can be because I do not like people to feel sorry for me or for my family or most importantly for Zack…and truthfully most of the time life is pretty great.  But there are moments when it sneaks up on me and the tears just come and there is not a darn thing I can do about it.

I also realized that every once in awhile I should probably share some of that because it is our reality and the reality of many other families with special needs children.  Even though this is true, it is also true that the special needs families in my life are also some of the strongest, most dedicated and resilient people I know.

I read an article on Facebook today, you know, the source of all true and inspirational things in life.  Interestingly, the article is from a blog originally posted in August of 2013, but shared by two different friends today…coincidence?  I think not.  The article spoke to me.  It was an article about prayer life, but it basically said instead of praying, “God, make it better” I should be praying, “God, make it count.”  This is the life you have given me, make it count.  Let me learn from hard things.  Help me to teach my boys to learn from them as well.  Let us learn to be strong through the hard things, do not let these experiences be wasted and, most importantly, make them count for Your glory.  It was just what I needed to help me reset my thinking.  If you want to read it for yourself, here is the link.

Going for a brisk (20 degree), endorphin producing, evening run with my Flying Feet buddies didn’t hurt either. Coming home to my four favorite guys, a warm house, a yummy dinner, a hot shower and soft cozy jammies was pretty great as well.

Hug your babies…and all of your people!

~ Dawn

 

 

I’ll Be Home For Christmas…

Ah….the ever-changing plans of Mr. Zack Penrod.  After planning to be gone for Christmas, packing all of our gifts, arranging hotels and wrapping our minds around celebrating in a new place, we are back home.  I have to say, there really is no place like home.  Our beds are cozier, the food is better, we have more space and we can lounge around all day in our pajamas (well, we could…). 

Zack has been feeling OK since his discharge.  He did not feel great on our ride home.  He looked sick and his stomach was hurting.  When we stopped for lunch, he asked Jim to carry him and he barely touched his food.  It was his first day off of pain medicine and fluids so this is not really surprising.  We may also have forgotten to pack Tylenol….not that we would have done that after all this time.  Sigh.  Poor Zack.

When we got home, Zack’s friends were outside and gave him a cheerful welcome home.  Zack managed to stay outside for about two minutes before declaring he was cold and tired – it was 62 degrees.  He has been sleeping sitting up (his belly pain position) since we got home. Luckily for Z, we actually have pain medicine at home AND give it to him when necessary.

Yesterday was a little better.  We finally made it to Sports Clips for a much-needed haircut.  In between turning pale and not being hungry, he had several bursts of energy that were so amazing his brothers declared themselves in time-out to escape the craziness.

We are working on figuring out this new mucous fistula.  Unfortunately, it sits at the bottom of his abdominal incision right where the waistband of his pants hits his belly.  His surgeon said she put it there to cut down on the prolapsing risk.  Another thing that might prolapse?  Awesome.

Our biggest issue at the moment is keeping up with his crazy output.  We have to start giving him bolus fluid doses through his g-tube to keep up with his losses.  He currently has his dehydrated look going on, but we feel confident we can handle it here at home.

We also had our first visit from Zack’s new Home Care nurse.  His PICC line dressing needs to be changed once a week.  Since it is a sterile procedure, I am not qualified to do it by myself – thank goodness.  I am sure I could learn.  I have been told that some families do it themselves.  I am just grateful that someone else is doing it for him as I do not feel comfortable messing with a line that ends right near his heart.  I would much rather have someone take over that responsibility!

Now that we are home, this family of mine actually expects our Christmas traditions to happen.  You know, the food part.  Trying to pull together all of the things we do for Christmas would be pretty hard, so we took a poll and picked some of our favorite things.  Today we will make two Christmas goodies, have our normal Christmas Eve fondue before church and homemade cinnamon rolls for breakfast on Christmas morning…or candy from our stockings. Come on!  You know this happens!

Our awesome next door neighbors have invited us to share their Christmas dinner with them.  I am not sure who is more grateful for the invitation, me or my guys.  Thank goodness for friends who see our weary faces and extend kindness.

Do not let our lack of energy fool you, though.  The Penrod family is counting our blessings this Christmas.  We have been overwhelmed by the outpouring of love so many have shown us. I get teary even thinking about it.  Santa coming to visit Zack on the fire truck, classmates cheering for Zack, friends giving Zack encouragement, invitations to dinner, packages and cards arriving at the hospital, doctors and nurses working hard to get us home for Christmas, all of these blessings….we are so thankful.

So while Zack may not back to normal, he is incredibly happy to be home and counting the hours until the “jolly old guy” arrives.  He wants to be allowed to sing tonight at church because, “Ms. Judy is counting on me to be there to sing to all the people about baby Jesus!”  And that, my friends, is the real joy of Christmas.  The birth of Jesus.  I am so thankful that we are home and that Zack will get to sing tonight and share his joy with others.  May we all have such childlike faith!

Merry Christmas!

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~ Dawn