THIS IS MY STORY . . .

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Dec 5, 2017

“Instead of a river, God often gives us a brook which may be running today and dried up tomorrow.  Why?  To teach us not to rest in our blessings, but in the blesser Himself.” -AW Pink

 

Hey friends,

 

I’m so sorry that I haven’t blogged since October!! 🙁  November was a pretty busy month with Thanksgiving and other things going on, and I was waiting and waiting to hear “the plan” from my surgeon..

 

Well, I finally heard confirmation from my surgeon, and the big news is, my major bladder/abdominal surgery has been postponed!  I wrote in my previous blog post that my surgery date was scheduled for December 13th.  Long story short, at the beginning of November, my surgeon told me how she wants my prealbumin level to be above 20 so that I heal well after such a big surgery.  It was hanging around 18-20, so my GI dr. added an additional 10 more grams of IV protein to my daily TPN (I now receive 54 grams total of IV protein per day).  A few days after that change was made to my TPN, I had my regular weekly blood draw, and we found out that my prealbumin level dropped down to 15 (which is pretty low as the “normal” range goes up to 32).  We were all confused, so my GI dr. said he might need to look into things if my level continues to stay low.  The following week, I had the level drawn again, and it didn’t move a budge! 🙁  My GI dr. told us several reasons that cause prealbumin to drop….namely, inflammation, infection, malnutrition, kidney issues, etc.  But none of those things seemed to be going on..

 

Well, at the end of that week, I started feeling a little “off” with a low grade fever.  Then, more and more things started going on like no appetite, weight loss, nystagmus, more fevers, and I almost threw up during the middle of the night this past weekend.

 

And still, my prealbumin continues to remain low.  Something seems to be brewing, and we’re not sure what….whether it’s a “mito crash” or the start of a central line blood infection.  So my surgeon agrees that we shouldn’t have the surgery right now because I need to be as healthiest as possible and this prealbumin level NEEDS to go up!  She does want to see me again for a follow-up to discuss the new plan going forward..

 

In the middle of November, I had my 6th sleep study to adjust the levels for my new adaptive servo ventilator for my bad central sleep apnea.  Right now, I’m using a loaner machine, waiting to get my own new device as soon as insurance approves it..

 

I still need to get used to this ventilator….it’s weird….if I hold my breath, the machine “breathes” for me! :O

 

On top of all that has happened lately, I also had to make an unexpected trip to the ER last week because my jejunostomy feeding tube accidentally got pulled out completely! :’(  And it was so extremely painful to try and insert back in..  I was upset that this happened a second time, and I just hate to think that this may happen a third time….even though I try to prevent these things from occurring by using a feeding tube clip on my shirt.

 

But, I’m continuing to take it one day at a time, knowing that God gives His unending grace to me for each hard day..  He is so faithful and patient and kind to me.

 

If I don’t blog again until after Christmas, I hope all of you have a very special Christmas with your families!! 🙂

 

Post written byKerissa

Check out my previous posts below

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Past Few Months. ...
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Mitochondrial Disease Awareness Week 2 ...
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2019 Mitochondrial disease appointment ...

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