Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Sunday, June 17, 2012

The Adventures of a Traveling Tubie!


Our family has taken long trips several times before (always by car) but this past trip was the longest drive and the longest stay we've taken since Case became a Tubie. We drove about 10 hours and stayed 7 days in North Carolina  with extended family.  We also stayed in VA on the way down making it a total of 8 days. That means 8 feedbags, 8 Farrell bags, 2 right angle extension tubes (for all his feeds), 1 roll of medical tape (to keep tubes in at night), 8  Mickey-Button pads, 24 cans of Compleat Pediatric, 1 can of DuoCal, 2 empty bottles and caps, medications, syringes to flush and dispense meds, 1 emergency back-up Mic-Key button kit, his feeding pump and a large syringe with a straight angle extension- in case (God forbid) Case's only pump breaks, and we have to wait for a new feeding pump to be overnighted from Pittsburgh. Oh, and his Pumpkin Pack. Oy! That's a lot of stuff! And 95% of it can't be just picked up at Wal Mart if we leave it home.;) So, to answer the infamous question, "How do you travel with a Tubie?". You just do. You set aside an extra day (or two) to pack all his crap and you of course pack your patience, too.
  Vacation came and went. It was wonderful and made me even more thankful for Case's terrific nurses that take great care of him and his feeds, meds, etc. for 8 hours at night. I forgot how tiring that can be. It's amazing how as a mom you just adapt to whatever challenges motherhood may bring. There were lots of stares (NC isn't very "feeding tube aware") and TONS of attention for our adorable Tubie. One large family even stopped and talked to me and Case during a feed. Their cousin's daughter had a feeding tube. It was refreshing for someone to know about feeds.;) Any way, I snapped lots of pictures (just in case you are a visual learner like me) to take you through the Adventure of a Super Tubie!


In case you were wondering this is what all those supplies look like all packed up!

I didn't have anything thing to "prime" (when you pump feed you need to fill the long tube with formula so you aren't pushing air into Case) into so I primed out the window.:)

My back seat helper.:) We run 5 feeds a day for about 45 minute through the pump and one continuous feed for 6 hours at night. So, it felt like a lot of the car ride consisted of measuring, adding Duocal, shaking, priming, feeding and of corse...vomit. He retched and vomited 3 times before we even got to Brezewood (about 50 minutes from our home) on the way to the beach. We stopped at a rest stop in Breezewood so I could clean a vomit covered toddler and his poor, stinky car seat.

And the vomit didn't stop with the car rides. It continued in the hotel and once we got to the beach. Poor guy seems almost used to it by now.

Once we got to the hotel the first thing we did was SWIM! Case only swam for 10 minuted bofre it was time for another feed. So, what did I do? Naturally I hooked him up and his daddy held him at the steps. Being tube fed shouldn't mean missing out on life it's just a different way of living!






We didn't have his IV pole so we fed him with his Pumpkin Pack (the adorable monster bag you see) or without.

I even fed him on the beach! I of corse kept his stoma (the hole in Case's body that the Mic-key is plugged into) clean and sand free.

He ate. We ate.

One night the medicine port came open on his tube  (I forgot to tape it closed) and his feed ended up in his bed. Ew.
 Sleeping.
Venting.

Chilling with his oh, so cool crab Tubie Whoobie. They are also on  Facebook.





And that is all for this particular Tubie Adventure. I hope you enjoyed it and remember I am not a doctor just a mom of a tube fed child. I take the advice of some pretty rad doctors and use my maternal instinct when it comes to the medical care of my son. As always, consult your doctor when it come to your tubie's care.:)

2 comments:

  1. I've said it before but you are one of the strongest women I know. We love you guys! We'll need to do another cookout this summer!

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  2. Thanks, Vanessa! You are so sweet!! We definitely need to do another cookout.:) We love you guys so much!

    ReplyDelete