What Makes a Good Hospital Stay!!

     On the one hand, you know you have visited the hospital a little too often when you can write a blog comparing your different stays…hoping to learn from your previous experiences to make your next stay better.  On the other hand, I recognize that compared to some kids with Fatty Acid Oxidation Disorders, Christopher’s hospitalizations have been relatively few!  I am extremely grateful for the countless times Christopher has been able to fight illness without a hospitalization!  And yet, just three weeks ago we found ourselves unexpectedly at the hospital once more.  As we left, I had to ask myself, “What made this visit feel so much easier?”

   First, the clinicians listened!  Even if you have never experienced a hospital stay, I am sure you can imagine how challenging it is when you have doctors on your team that are not hearing you out.  I try to keep in mind, during our hospital stays, that doctors are human and that I have no clue what went on in their day…but let’s be honest, when Christopher is having muscle breakdown (rhabdomyolysis) my guard is up and I am ready to fight for whatever he needs to make him better.  A common tension amongst families of children or adults with a rare chronic condition is that families often know more about the condition than the doctor.  This is by no means an insult to all of the schooling doctors go through!!  How could I expect a doctor to stay up to date on the latest LCHADD information when there are only 6-8 kids in the entire state of Georgia with it!  I feel like the doctors and I do a dance when we first meet, when Christopher is admitted to the hospital.  They are trying to see what I know, and I am trying to see if they are willing to listen. 

     The fifth floor doctors at Eagleton Children’s Hospital this visit were amazing!  They treated me like I was a team member.  They ASKED Christopher and I questions, AND LISTENED!  They were even honest that they had never met a child with LCHADD.  All of this created wonderful patient/doctor report!  Plus there were the little things that showed they cared:  They requested a “My Special Body” book and wanted Christopher to sign it!  The nurse figured out how to get Christopher hard-boiled eggs by creating a “medical order” with the cafeteria.  The doctors not only followed my son’s protocol letter but also helped coordinate care by reaching out to his pediatrician!  All of these actions helped calm my anxiety about Christopher’s care, and allowed me to focus on just being my son’s mom during this stay.

    Second, the stay felt easier because I packed a lot of Christopher’s own food!  It may sound crazy, but after Christopher had dark urine (a sign of muscle breakdown) and I spoke with his doctors about bringing him in, the first thing I did was start packing food I knew he could eat.  One of the hardest challenges with past hospitalizations was that we were so limited with what Christopher could order from the cafeteria.  After Christopher has rhabdomyolysis, it is really important that he is eating well and getting high protein/complex-carbohydrate meals that are still low in fat.  With this in mind I packed: greek yogurt, low-fat ham, Ezekiel bread, tortillas (I had just made), beans and rice, and fresh fruit.  This fore-thought gave us so much more wiggle room with the timing of my phone calls down to the cafeteria and took away the stress of not knowing if I would have what Christopher needed nutritionally, when he needed it! Ultimately, we used the hospital meals to supplement what we couldn’t pack from home.  When I showed up in the ER with a large cooler I got a lot of curious looks, but it was worth it!

Playing x-box with his buddy Ireon!

     Christopher’s outlook was a bit different than mine, but in true kid fashion.  First, he loved that he “got to rest” because “my legs were so tired”.  He thought it was really cool that he got to enjoy “x-box” and visit the hospital’s library.  We watched movies together, a soccer game, read…and he even had a couple visitors! Wheeling him around the courtyard or playing piano in the chapel broke up the day tremendously.  

Hospital stays are not all the same.  They are a lot harder when he is having muscle breakdown due to a viral infection.  Not only is it scarier (cause you never know when those cks will peak and what other damage may occur), but he has to be confined to his room so as to protect other patients.  Anyone confined to one room for 3-5 days is bound to go stir crazy! 

   For those of you new to the LCHADD world I know you are wondering why these kids end up in the hospital so much, or perhaps you are wondering how Christopher landed in the hospital this go around.  For kids with fatty acid oxidation disorders (like LCHADD), when they get sick and are fighting viral infections their body cannot use their fat as energy.  So if they go through all of their sugar stores, their body will try to use the fat for energy but when it can’t it will start to break down the muscle instead.  This muscle breakdown leads to toxic by-products in their blood, such as myoglobin.  These toxic by-products are really hard on your kidneys and liver.  The treatment is to increase their calorie intake and start over-hydrating to try to flush the toxic by-products in their blood stream. This is done through oral hydration, IV, N-G tube, and/or G-tube depending on the situation.  Depending on how much muscle breakdown Christopher has experienced, and the cause, sometimes we can treat him from home.  Unfortunately, the only way to know exactly how much muscle breakdown he is experiencing is by getting a blood draw.

    Muscle break down can occur for these kids for a couple different reasons.  Sometimes it occurs if they get a viral illness with fever, and are unable to eat.  Other times they might play really hard at a sporting event/recess and not consume enough calories or maintain hydration as well as they thought.  Other moments there is what we consider the “perfect storm” of events.  Perhaps, it was a super amazing day!  Your child eat as he/she normally would have but unbeknownst to anyone they used more energy at the playground, and then they were hitting a growth spurt, and they were excited for the birthday party after school.  All of these things effect your metabolism and calories needs, but it is super hard to know when your child is hitting another growth spurt or how to compensate for excitement or stress.  All these things together can lead to muscle breakdown.  Then there are times when kids go into rhabdomyolysis and there is nothing as a parent you can pin-point.  Those are the hardest moments. 

Christopher back at school with his friends!

   This last episode for Christopher, we were never able to pinpoint one particular event that led to his muscle breakdown.  The resident doctor kept talking about Christopher’s “fantastic” day!  I loved the way he put this, because there was no blame or judgment in his tone for this episode.  He helped Christopher embrace the beauty of his day with the unexpected consequences.  Yes, Christopher had a busy day on October 6, 2018!  He got to spend all day with dad at school in his gym, played a short game of soccer with his friends in the afternoon, enjoyed a Nerf battle with his buddies during a sleepover and was looking forward to his best friend’s birthday party the next day!  He stayed “fueled” up very well through all of this!  Was this a lot?  Yes.  Has he had “fantastic” days before and not had muscle breakdown? Yes.  What sent him over the edge?  Growth spurt?  Stress?  Excitement?  The doctors told me I will drive myself crazy if I try to figure out why in this scenario.  And so, I have chosen this time to let the “why” go, throw the reasoning out the window, embrace his “fantastical day,” and feel grateful for a peaceful hospital stay.

"It's Cool to Have LCHADD..."

            This summer the Harry Crew took a road trip from Atlanta, GA to Minneapolis Minnesota and then on-ward to Lake Superior!  It was our first big road trip together that wasn’t to visit family and we stopped at several state parks along the way, and saw beautiful landscapes, boulders, and water.  After all of our adventures, what does Christopher talk about the most?  Where does he keep bugging me to go back?  “Mom, when can we go back to the Embassy Suites Hotel?”

            Yeah, sure, there was a pool, he got to watch soccer on a big screen, and he even got to eat something more than fruit at the continental breakfast (which is rarely the case).  But the zinger was that the FOD Family Support Group conference was there and for the first time, that he can remember, Christopher was able to connect with kids his age and older with FODs.

Learning how to make fat molecules and how they work in the body!

   This year at the conference, while the adults were learning about the latest research, and seeking to support each other through stories, their children were given the opportunity to do the same thing…in their own way.  We had two sessions for youth.

Learning about fat, protein and carbohydrates!

The first day we learned about our body: how it functions, how it metabolizes the food we eat, and how cells break down fat for energy in the mitochondria.  Our second day we did a science experiment discussing rhabdomyolysis (muscle breakdown) and then nine kids partnered up to role-play asking questions of doctors; confidently!

What touched my heart more than anything was watching Christopher connect for the first time with Luke, an older youth with LCHADD.  I’m not sure that they had super deep conversations about living with LCHADD (although perhaps I shouldn’t put anything past my 10 year old son), but Christopher enjoyed getting to spend time with him so much!  A space was created…a kind of space he hasn’t had before…where LCHADD existed outside of himself and his experience…and perhaps for a moment having LCHADD, counting fat, taking MCT oil, monitoring exercise; was a norm.  Christopher came back after playing cards with Luke Saturday afternoon and said, “It’s cool to have LCHADD!”  The door was open for him not to feel alone in this journey, and I still tear up thinking about it.

Luke took time to hang with Christopher during one of the adult sessions!

The conference plays an important role for every family who has a child with an FOD.  It creates space for clinicians to disperse new information, while inviting families to ask questions and seek understanding.  There is a tremendous feeling of support as you share your stories and listen to others.  These stories are also helpful for the clinicians to hear because when you deal with rare inherited conditions sometimes overlap of symptoms are noticed for the first time in environments like these. 

Thank you to Deb Gould and all of the volunteers that help organize this conference! And thank you to the clinicians and families that take the time to come!  Conferences like these are extremely expensive to put on!  Ryan and I are running a Half Marathon on November 10^th at Chickamauga Battlefield in North GA to raise awareness about FODs and money for our next conference.  Please consider donating!!!  There are two ways to give.  You can either donate on-line: https://fodsupport.networkforgood.com/projects/44599-fod-fundraising-2018 (select amount, then “Chickamauga Battlefield”) or you can donate via check: Payable to: “FOD” and put in memo “Race donation/General Trust.  All checks should be mailed to: Deb Gould, PO Box 54, Okemos, MI 48805-0054 .  All donations are tax deductible!

Will He Get Tired of Cooking?

      “Will he get tired of cooking…tired of eating…as he gets older?  How will this affect him?  Will this lead to him being off diet?”   This thought, or worry, goes through my head on occasion.  Typically it is after a long day when I myself am exhausted and the last thing I want to do is cook.  On those days I think about Christopher.  What will it be like for him when he is 20 and comes back from a long day of classes and doesn’t feel like getting something to eat?  How will we teach him to push through in those moments and do the right thing?  How do you prevent burnout from cooking?

            I have brought Christopher into the kitchen with me from a very young age, trying to encourage a love of food and “the process” that is cooking.  He used to love being in the kitchen flipping pancakes with me, but on an average night, after a long day of school he is much more interested in playing; which I totally understand!  Yet, I still try and create these moments, where I can teach him skills.  And for the now, this is enough.

            I am fully aware though, of how much time food prep takes for my little guy.  I easily spend three hours a day cooking and preparing food…And that doesn’t include dishes (thanks Ryan!).  So how will he carve out that time into his own schedule as he gets older?  How do I support him as a young adult?

Trying to make food fun for football game!

I am hoping to glean tips along the way from older parents, and the FOD Conferences.  One mom shared that she makes a couple of meals that her son can freeze and take with him to college.  Another mom and her daughter worked hard with the college cafeteria to make sure there was always food available for her.  I tuck these ideas in the back of my brain.  But what else?