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Sophie Update January 2014

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Cleo our dog in our crazy winter weather

It’s been a tough winter here in the Midwest.  With all the crazy weather, getting out and about is more than difficult with someone who doesn’t regulate their temperature well and is in a wheelchair. Sophie is very complex medically, so any improvements are reason to celebrate. With that said, Sophie is in good health which is amazing this time of year.  In past years January you would find her in the hospital, very sick.  We used to joke that our out of pocket for insurance was usually done by the end of January. That doesn’t happen anymore.  But I do feel the walls are closing in on her a bit!  This Mom is thankful that we are returning to our “normal” days as the weather gets better.  

The rest of the family has been dealing with the nasty viral thing that is going around.  But Sophie, who has always had a weak immune system-she’s not been affected (fingers crossed.)  What is so different? Sophie’s the only one in the family consistently on NutriiVeda.  We have done a number of things to keep her healthier, despite the shortages in vitamins, minerals and essential ingredients in her central line nutrition.  These shortages would have been devastating to her a few years ago.  Now that she is on 4 scoops of NutriiVeda, which contains most of the vitamins and minerals for healthy individuals, she appears to be absorbing it.  Why the bold print?  Because she has always had issues with her GI tract not working well (very slow motility) and the suspicion that she is not absorbing nutrients.

Her infusion company, ThriveRx, along with her GI doctor who has known her for many years has been another reason for her continued good health.  ThriveRx and the nutritionist work tirelessly to be sure that Sophie’s medicine, hydration, and IV nutrition are all balanced.  With so many ingredients having shortages, and Sophie relying on these things to survive, it’s a huge thing.  Recently with the shortages on Lipids (the essential fats ) they had to reduce her amount, which in turn caused her to start losing hair.Sophie hair loss EFAs..7-10-13  At least that was the only variable we could account for, nothing else had changed. They quickly raised her amount back up, but I believe we were at a “tipping point” for those essential fats and it started a cascading effect in her body that she is still recovering from.  Fats are one of the only ingredients that is not provided in the NutriiVeda.  Iron is another.  Because of the NutriiVeda working so well and probably helping with her absorption, I recently added in spinach to her “smoothie” she gets by g-tube midday.  I was doing a liquid iron, and we got her numbers into the normal range, but this was pretty tough on her stomach. Currently she gets a small handful of organic baby spinach, and has been tolerating it since November 2013.  Labs will be done next week to see if the iron levels are maintaining with the use of the spinach.

A new twist to the shortages is now there is one for Selenium.  We never know how long some of these shortages will last, but it’s always troubling for someone who does rely on IV nutrition almost exclusively.  Thankfully, NutriiVeda has selenium in it.  We’ll be testing for her level next week also so we know where we are starting from with it not being included in her IV nutrition.  I’m hopeful that her body will be able to maintain its levels with the absorption of the NutriiVeda protein (56)

I’ll keep you posted on her numbers! Fingers crossed!

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