Friday, October 19, 2012

Special Needs Spotlight: Jackson





Hi.  My name is Amanda and I am married to my best friend Neil.   We have 2 wonderful little boys.  Carter is 4 and Jackson is 17 months old.  After having 90% of his small intestine removed on day 1, Jackson is left with a condition called Short Bowel Syndrome… AKA Short Gut.  There is no cure, no fix.  We don’t know exactly what the future holds for our little boy but we do know that he a fighter.  He is my hero. 
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Miggy:  Can you take me back to the day you knew your son Jackson would have special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Amanda:  That day was devastating for me as I learned of exactly what this condition meant, everything he would lose because of it.  I had never heard of this condition and to this day I am still learning about it. I felt so alone and overwhelmed.  One of my first thoughts (I’m kind of embarrassed to say) was “Will I be able to bond with a child with special needs?”  And my second thought was “Can I ever truly be happy again?”  The answer to both these questions is YES YES YES!!  Our lives are completely different than they were 17 months ago but we are learning to embrace our new normal and we are still happy!  And I am so in love with my son! 




Miggy:  Explain how Jackson's specific special need affects your day-to-day life?  

Amanda:  One of the main side effects of short gut is diarrhea. With so little intestine remaining he has and most likely will, have diarrhea for the rest of his life.  We are talking sometimes 15-20 times a day.  And this isn’t your normal baby “blowout.”  More often than not, it cannot even begin to be contained in a diaper.  This produces about 5-6 loads of laundry a day.  Not to mention the beating that my poor carpet takes each day.  I have some fantastic carpet cleaner if you need some tips!  :)  Luckily we have made great strides and he is down to 5-6 dirty diapers a day.  Poop really controls his life.  He is often awaken several times in the night because of dirty diapers and naps are cut short by it as well.

This makes it really hard to go many places or want to go many places.  Just last week at church he had a particularly bad blowout and I tried to sneak out of Primary without anyone noticing until the diaper began to overflow on to the floor and my diaper bag.  It was very embarrassing and I ended up leaving church early in tears.  He will be able to be potty trained someday and hopefully these episodes can be contained to a toilet but until then, it truly controls most of our lives.  Diarrhea is not only a bit gross but can cause many medical problems for him such as dehydration, and very quickly.  He has been rushed to the hospital before for severe dehydration and spent many nights in the hospital because of it. 

Aside from the diarrhea issues my son has a central line.  A line they inserted in his neck and runs to his heart.  He receives TPN 4 nights a week because his body is unable to absorb enough of the nutrients and calories by eating.  TPN goes right into the veins and bypasses the intestines so it can be absorbed.  The TPN and central line save his life because without it he would slowly starve to death.  A central line requires a lot of care.  It must be kept dry and clean at all times (which is really hard with constant diarrhea).  Having a line makes him susceptible to horrible infections.  Infections that can and almost have taken his life.  These infections can come from outside bacteria entering the line or from his gut leaking bacteria.  Jackson spent the first 6 months of his life in and out of the hospital (mostly in) fighting these infections.  There were multiple times I thought we might lose him.  Currently we are 1 year infection free!  And praying it stays that way.  Any time he has a fever he has to be taken directly to the Emergency Room for blood work and observation since a fever is the first sign on infection and it can go from bad to REAL bad in minutes with these infections.  TPN requires a ton of supplies so going anywhere requires bags and bags of supplies.  At least I’m not the heaviest packer anymore!

Another daily struggle we have is with weight gain.  It is a struggle to get him to gain weight and keep that weight.  Jackson still has to drink formula as he is also allergic to milk, eggs, wheat, oats, fish, peanuts and tree nuts.  Aside from the allergies his body cannot digest/handle all fruits, most veggies, foods high in fats, or too many carbs.  He can have no sugar.  He mostly eats meats of all kinds sprinkled with a little rice, potatoes, green beans and squash.  It is very stressful making sure he is getting enough calories without getting too much food to overwhelm his gut.  Jackson currently drinks about 45 ounces a day of formula along with table food and he still cannot gain weight without the help of TPN.  We hope that someday his gut will be able to adapt enough to absorb the calories and nutrients he needs without TPN.  Jackson started his life on 100% TPN 24 hours a day, 7 days a week.  Now he is down to 36 hours a week.  He is making progress.  Slowly but surely.  If he ever can survive without a central line he will need to consume an insane amount of calories.  He already eats 3 times as many calories as a normal 1 year old.  We even have to wake him twice during his 12 hour nights to make sure he’s getting enough calories.  I’ve had several people comment that they wish “they could eat whatever they’d like and not ever gain weight.”  But I promise you, you don’t really mean that.  It is frightening to worry and wonder if your baby is slowing starving and knowing that no matter how much you feed him, it may never be enough.  Our hope is that he will someday be TPN free and able to eat a fairly normal diet and have fairly normal bathroom habits. 



Miggy:  What are the biggest worries you face for Jackson? 

Amanda:  I worry about Jackson in social situations.  Food is such a social thing and he may never be able to eat birthday cake or pizza like the other kids.  I worry about him being excluded from birthday parties, Halloween, Easter, or Christmas activities since they are largely based around food.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Amanda:  Oh wow!  Where to start!  The loud farts in quiet church….down to my 4 year old asking at each diaper change:  “Was it a shart or a blowout Mom?!?”  It’s always one of the two!


Miggy:  How can people best approach or respond to Jackson? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Amanda:  I wish people knew it was ok to ask me about him and his condition.  When you come over and he is connected to his tubes/pumps of TPN it’s ok to ask what those are instead of pretending they aren’t there.  You won’t offend me.  J  And bless the sweet lady who helped me clean up his mess last week at church without saying anything.  He is a regular little boy who loves books and trucks and cries when he doesn’t get his way!


Miggy:  What is the biggest lesson you’ve learned since becoming Jackson's mom?  

Amanda:  That I can’t fix everything and that’s ok.  A good attitude goes a long way.  I decided on day 1 that I could either be bitter about the situation or I could look for all the positives in our lives and all the miracles.  If I were bitter I would have missed all the miracles we have been blessed with. 


Miggy:  If you could say something to the mom who is just starting on this journey, what would you say?   What would you say to yourself if you could go back in time?   

Amanda:   I would tell her that you can still be happy.  Happier than ever, but at the same time it is okay to cry.  If I could go back in time I would tell myself that I am stronger than I give myself credit for and that tears aren’t a sign of weakness.  

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A huge thank you to Amanda for this incredible spotlight.  This spotlight was so educational as I had never heard of short gut and had NO idea how serious and life altering this could be.  Just one of the many reasons I continue to be grateful for this series...I really learn so much each time.  And I love what you said at the end, that you can be "happier than ever, but it's still OK to cry....tears aren't a sign of weakness."  Amen sister!   You're amazing Amanda... and that Jackson is a dreamboat!  :)   Love him.

As always if you or anyone you know would like to participate in my special needs spotlight series please email me at thislittlemiggy at gmail dot com.  And if you've emailed me and haven't heard back (or it's been a while since I last responded) please be patient!  I'm getting there!

Have a great weekend! 

8 comments:

  1. I love these spotlights you do! I was hoping you would get to the part about why he had to have 90% of his intestines removed?

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  2. Sorry i forgot to mention that part. The main artery that should have supplied blood flow to the intestines was weak. The surgeon said his small bowel looked like a big chain of sausage links. Since there was little to no blood supply to the bowel they were basically dead and had to be removed.

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    1. Wow. Very inspiring story. I have never heard of that condition before too. It sounds hard, but seeing Ms. Amanda's positive attitude now, I can see everything will be alright. Just by looking at Jackson, you can already tell that he's a wonder child. You're right Amanda, we can't fix everything. But we can accept them, right? I salute you!

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  3. My nephew has Eosinophilic Enteritis with less than 10 foods he's allowed to eat at this point in time (hopefully more as they discover what his body can take) so he also does not have the typical social experiences associated with food. It feels good to know that there are others who understand and other little boys who learn to celebrate birthdays differently, but happily :) I admire your daily hard work and positive attitude- thanks for uplifting me and teaching us about short bowel syndrome.

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  4. What an adorable little boy he is! And his big brother is a cutie, too. My brother recently had a feeding tube inserted and can't take anything by mouth, possibly never. We never realized how much life can revolve around food until now. I'll sure be praying for sweet Jackson's steady progress!

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  5. What a sweetheart! And what a blessing. I had heard of short gut, but never really understood all that the day-to-day life entailed. You and your family are amazing. Thanks for sharing.

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  6. I really do love and appreciate this series. Last week I was at a coffee shop and a little girl came in and sat down next to my son. I invited the mom to sit by me as there wasn't much space. Her daughter had devices hooked up to the back of her head and was using hearing devices as well. Because of this series, I knew it would be okay to ask this mother about her daughter, what her circumstances were. It was an amazing experience and I could tell the mother was grateful for the chance to talk about her beautiful daughter and explain what their lives were like. I would never have had the courage to have asked before and my son might have missed out on an opportunity to play with this sweet girl. Thank you, thank you, thank you!

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  7. Jackson is adorable. It is so nice to read about another mom with a situation similar to mine. My 16-month-old daughter (our fifth child) lost most of her terminal ilium on the day she was born due to a duplication cyst on her small intestine. After three months on TPN in the NICU, and four surgeries later, she was able to come home. We have never been on the charts for weight (sigh), and see a GI specialist regularly, but we are grateful for the progress she has made. She is active, happy, and smart, and I have to remind myself that amidst all the diarrhea and food struggles, we are in a good place. Were you at Primary's? Maybe we overlapped. :) Best wishes to you and your cute family!

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