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

Surgery #9 – 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

 

Manometry Day

It has been a crazy few days for Zack.  Yesterday was so busy and LONG that I did not have a chance to write an update.  Now I have so much to say that I am pretty sure I’ll forget lots of important things and equally sure I’ll ramble.  Forgive me, please.

Yesterday began bright and early with manometry testing. All was fine until the introduction of medication.  After about an hour of testing, the manometry team put an antibiotic (erythromycin) into his IV which caused him to become flushed and feel sick.  The medication is used to stimulate the small bowel.  After another hour, Zack was allowed to eat pancakes and boy was he a happy child!  He ate them so fast he gave himself a stomach ache, but I think he thought it was worth it.

The test continued for another hour or so and then the nurse added another medication to Zack’s IV.  I do not remember the name of it, but Zack felt a lot of discomfort.  We were told it was also for the small bowel.  I am not sure if the first drug did not produce the waves they were looking for or if it is standard procedure.  Zack has never had it before.

At long last it was time for the large intestine medication to be given.  Zack’s colon did not respond how they had hoped, so they administered another dose. The medication causes lots of cramping.  Zack was not a happy camper.

Sadly, during the administration of this last dose, Zachary’s stoma prolapsed.  We knew it was only a matter of time, but really?  At least we were in the hospital.  The strange part was that Zack was on his back in bed.  It was not as large as some of his other prolapses, but it would not reduce on its own.  Seven hours later and several attempts at reducing it by the surgery Fellow, that pesky stoma finally went back in…..and then there was quite an outpouring of “stuff” from the stoma. Try not to think too much about that.  Let’s just say that our nurse last night deserves a serious raise.

We also met with the GI team on service to discuss a number of tests they wanted to perform.  They checked Zack for viruses, parasites, cystic fibrosis, malabsorption issues, nutritional status and a number of other blood work type things.  Because some of the things they were testing for were potentially contagious, Zack was placed in isolation.  That was fine yesterday when he felt bad, but today it was hard as Z felt pretty well and wanted to go to the playroom.  It is the highlight of the hospital after all.

Because Zack has had “Angry Badger” issues, we met with a pediatric psychologist to discuss the situation.  Her assessment was that Zack is suffering from medical trauma and could benefit from counseling.  That was fun to hear, but not really surprising.  One good thing that came out of her evaluation is that he is “a well adjusted child in all other areas” and only has anxiety regarding medical procedures.  It was actually one of the best parts for me of being here.  She gave us some great tips and we started trying to incorporate them right away.

At five o’clock this morning Zack needed to have labs drawn. His IV was not drawing back so he had to have a needle stick.  Five o’clock in the morning and needles are usually a recipe for disaster, but I am happy to say that Zack held it together and did a great job.  He was still scared, but was able to work through it with breathing and distraction and talking and a wee bit of crying.  He did so well that his nurse gave him a Lego police truck.  Talk about positive reinforcement!  So positive in fact that he has been awake ever since….

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Around lunch time, Zack’s GI here in Cincinnati came in to discuss the manometry results.  We learned that Zack’s colon had no propogating waves at all until right above the anastomosis site.  That means his colon does not function from the beginning of the large intestine until right above where he was reconnected. It begins to function above the anastomosis for a very little bit and then stops again until it reaches his rectum which functions well.

We also learned that his high output is a result of secretory diarrhea.  I am not sure if I completely understand this yet, but for some reason his intestines secrete too much fluid.  The doctors are trying to get a handle on this because it needs to be under control before we do anything else.  That meant more blood work, a change in formula and antibiotics. Because his IV would not draw blood today a new IV had to be placed.  Despite his great effort this morning, this new IV was just too much for him to handle today. The Vascular Access Team decided that since his IV still worked in his left arm they would leave it in place and put a new one in his right arm to be used for blood draws.  They were wonderful in granting Zack’s request to leave his hands free for playing Wii.  His tests for infectious things came back negative, so he was finally allowed to head back to the playroom.  Behold the two IV wonder:

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The last person we met with today was the dietician.  We were thrilled to learn that Zack is now in the 30th percentile for weight!  Everyone seemed pleased overall with his growth and would like to see him bulk up even more before his next surgery….and there will be more surgery.

We expect that Zack will be discharged tomorrow.  Zack is counting on it, so I hope nothing else happens.  The GI on service this week is not super comfortable with Zack leaving with his prolapsing issues, but Jim and I feel like we have done this for so long we can handle it.  The only hesitation I have is how long it took Zack’s stoma to go back in last night, but if that were to happen here or in Maryland we would do the same things and home is always the better place to be.

We believe Zack will be having a colectomy (removing most of his colon) in the next few weeks.  Zack’s surgeon is currently in China so we have not made any concrete decisions regarding which surgery to perform. We do know that she is planning to add Zack to her schedule the week after Thanksgiving.  That is really soon!

Whew.  I hope I covered everything.  Time is almost up here in the playroom.  That is my signal to get off this thing and say good night.  Fingers crossed that we can bust out of here tomorrow.

Hug your babies!

~ Dawn

 

 

 

 

A Bump In The Road

Hola!  Have you missed me?  We had a little setback here and I just did not feel like writing about it until now. Much to my surprise, I’ve learned that people other than my family actually read this blog!  Last night our small group from church met at our house and one of the guys asked me why I stopped writing.  Whoa!  You read my blog?  Thanks!  That was such an unexpected blessing in the middle of a yucky week.  Let me tell you all about it.  You’ll probably need a drink and a comfy spot to snuggle into because you might be here for a while….

In the over 22 years my husband has been in the military, we have never lived by family.  Living near DC, we are blessed to be near lots of family.  It can be overwhelming at times, but it is mostly good.  One of the best parts is that my boys get to see some of their Aunts, some of their cousins and one of their Grandma’s often.  Last Thursday, we had a “date” to have dinner at Chick-Fil-A with Grandma, Aunt A and two of our cousins.  Zack was so excited.  He doesn’t like Chick-Fil-A (crazy, I know), so we packed his dinner and off we went.  A fun time was had by all.  Seriously.  It is so fun to watch Zack play with his cousins.  He loves them to pieces.  I think Jake, our other son, had fun as well since he was able to bring a friend along.

After being in the play area, it is my rule that the child must be bathed.  Who knows what germs lurk in there!  Upon entering the bath, Zack started complaining that his stomach hurt and that he had a cramp and needed Motrin.  I thought it was a bit odd, but he does comment on his stomach hurting from time to time, so I didn’t really give it too much thought.  Ten minutes later, he again commented on his stomach hurting.  My interest peaked.  From then on, Zack was crying in pain every 10 minutes.

Jim and I changed his wafer, got him into bed and tried to make him comfortable.  At 11:45, after we decided he really was not feeling well, we finally gave the child some Motrin.  Remember..I told you we don’t like to dispense meds around here!  Zack finally fell asleep sometime after midnight and I headed to bed.

At 3:00 a.m., Z began crying again.  This time he also began vomiting and it was not a pretty thing.  Every 15-30 minutes he was sick.  He started telling us that he wanted us to call his doctor, that his doctor knew everything and would be able to solve his problem.  It was at this point that we knew he was serious about feeling bad.  I “slept” with Zack and tried to comfort him until it was a reasonable hour of the morning to text his doctor.  By 7 a.m., I decided the hour had come.  His doctor said to take him to the ER and off we went.

By the time we arrived at the ER, Zack was so weak he could not walk on his own.  His eyes were sunken and he looked terrible. He was taken right back to a room, an IV was started and all kinds of people were called.  We went to x-ray and then saw Zack’s surgeon who happily reported that Zack did not have another obstruction and that he was fairly certain that whatever was going on with Zack was not surgical.  Always good to hear!  We saw the pediatric resident who felt that Zack had a stomach bug and told us that his white cell count was high and his glucose was pretty high as well, but both could be explained by the sickness.  We also saw Zack’s GI doctor and he agreed with the other doctors.  After some discussion between all the teams, it was decided that with his history, and the amount of fluid he was outputting, it would be best if Zack were admitted.

Thus began our four day stay at Walter Reed.

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Did I mention that on that same day our dear friends were arriving to visit us from Germany?  We had plans to have fun and stuff.  Luckily, our friends were gracious and understanding and made their own fun with Jake.  One night when I came home from the hospital, all of my lightbulbs had been changed out to black lights and there was a serious nerf gun battle occuring, complete with loud music and strobe lights.  I’m happy to say that nobody shot my sprinkler heads or there would have been some mighty sad people in my house.

Back to Zack.  Jim and I figured we would take Z to the ER, they would give him fluids and we would be on our way.  Needless to say, we did not bring anything useful, like say clothes, or a toothbrush, or something to sleep in or anything to do while waiting for Zack to recover.  Oh, and our laptop is kaput!  How can one type without a laptop?  We really need to get a new one soon!  Anyway, my sister came to the rescue and brought me a bag full of goodies.  Bless you, Carie!  She was also able to witness all the staff in their infection containment gear as it was decided that Zack should be tested for an infection called C. diff.  The doctors felt he was at risk after his hospital stay this past summer.  He did not have it, thankfully, but we got a good giggle out of watching everyone suit up.  I don’t know why we didn’t have to be careful around Zack, but I guess that is something I can live without knowing.

When Zack was admitted, the ER did not have any other cases similar to his stomach bug.  The doctors told us that by Saturday, there were lots of other children coming in with the same symptoms. One of the lessons we learned from this virus is that what is a normal stomach bug for most kids can quickly become dangerous for a kid with an ileostomy.  We knew Zack was more susceptible to dehydration.  The doctors drilled that into us over the summer.  I guess we were feeling pretty confident about our hydrating abilities after surviving all those hot summer days without incident.  Needless to say, we were totally shocked at how quickly Zack dehydrated with the stomach flu.  He started vomiting at 3:45, talked to the doctor at 7:00 and we were on our way to the ER by 8:00.  I don’t think we could have done things differently.  We are hopeful that maybe this bug was just particularly nasty and that next time it won’t be as bad.  Be assured that if it does happen again, we will be watching him like a hawk!

Whew.  Are you still with me?  So we have other children.  Shocker!  I try not to talk about them without their permission, but this story goes along with the stinky week.  Our oldest son attends the University of Colorado in Boulder.  You know, the state with all the flooding?  Yep.  That one.  Our son sent us a picture at 3:15 a.m our time on Friday morning showing us how his basement flooding.  The basement happens to be the location of his bedroom.  I woke up, saw the photo,  turned on the weather channel and started trying to reach our guy and NO ANSWER!  I tried reaching him by FB, txt, friends, etc. and we could not find him for over 5 hours!  It turns out he was sleeping.  Ummmm…..We now have a rule in our family that if you are in a natural disaster you MUST keep your phone on……I am happy to tell you that he is fine.  My nerves, however are recovering.

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Just for fun, I thought you might enjoy this video of the flooding on campus.  The student in the innertube is Drew’s roommate.  They are in the honors program.  Yes.  It’s true.

To top off the week, Zachary started complaing that his stomach was hurting again over the weekend.  His output was up to 1200 ml/day.  His output should be about 400 ml/day with Imodium.  He wasn’t eating, had little energy and was totally freaking me out.  His was down to 700 ml yesterday and looks like it will be about the same today.  He is eating a bit more, but still not drinking much.  His energy is improving and he made it through the school day without incident.  Here’s a picture of how he was feeling.

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Tonight, as I put Zack to bed, his eyes were red, he was super tired and my mama radar tells me he still does not feel well.  His endoscopy procedure which was to take place on September 10 was postponed until the 27th.  If he is sick again, we will have to postpone the procedure again.  In the end, I guess it won’t really matter.  I just find it hard to gear up for sending my guy off for general anesthesia and then having to regroup and do it all over again.  It is draining.

I also have to admit that I was surprised by how exhausted Jim and I felt when we got home from the hospital this time.  It was a much easier stay, less serious, and much shorter, but we both felt completely drained by the time we got home.  After a few days to reflect, I believe it is because we don’t sleep well in the hospital, seeing Zack sick is hard and it brings up questions about Zack’s future that really nobody can adequately answer for us.

I debated writing this post because I really didn’t have anything nice to say and we all know if you don’t have anything nice to say, you shouldn’t say anything.  But then I thought about why I started this blog in the first place.  To help other families learn from our circumstances. The main thing I want everyone to know is that dehydration is no joke for kids with ostomies.  It can happen fast.  Luckily, we made it to the ER and they hydrated Zack and all is well.

I also realized that it would be really wonderful to meet another family with a child who has an ileostomy.  There are things that would be great to discuss with others in our same situation.  I’m sure we will meet another ostomate one day, but until then, hopefully something I write will help another mom.  If not, at least I’ll be able to keep our family and friends up-to-date on our crazy life around here.  If you made it this far, thanks for reading!