Getting a feeding tube

Hey friends,

Just a short update!  I had appointments with GI and Nutrition this past Tuesday, and it's not great news---my weight's still steadily dropping..  So my GI dr. has to put in a nasojejunal feeding tube which will bypass my stomach and go directly into the small intestine.  I'm not getting enough nutrition because my stomach isn't moving food well, and that's making all my symptoms worse.  This NJ tube placement will be done in the OR on May 16th!  It's kind of a big step, but I'm past a medication stand-point and I'm losing weight too fast.  When I see the mito specialist June 17th, we'll see if he thinks I need a permanent feeding tube.

*54 DAYS!*

;)

I read this beautiful quote a while back from a small book that one of my friends let me borrow, and I wanted to share it with you.  I hope it's an encouragement to you. :)

"If God had told me some time ago that He was about to make me as happy as I could be in this world, and then had told me that He should begin by crippling me in arm or limb, and removing me from all my usual sources of enjoyment, I should have thought it a very strange mode of accomplishing His purpose.  And yet, how is His wisdom manifest even in this!  For if you should see a man shut up in a closed room, idolizing a set of lamps and rejoicing in their light, and you wished to make him truly happy, you would begin by blowing out all his lamps; and then throw open the shutters to let in the light of heaven."

~Samuel Rutherford

It's Official!

Wonderful news! :)  My appointment with the mitochondrial disease specialist at UCSD Medical Center is set in stone for June 17th!  My parents, sis, and I will be there at least a week since the muscle biopsy is scheduled for Friday, June 20th as well.  And after I see the dr. that Tuesday, we'll know more then if he will order any additional tests, etc.

this is what the hospital looks like!

*2 MORE MONTHS*

:)

Yesterday, I had physical therapy and also saw my pain dr.  The CRPS pain in my feet has still been really bad.  And this past Friday, my pinky finger and side of my right hand (my good hand!) accidentally got cut, and now the CRPS has been flaring up in that area. :/  That's how bad this pain syndrome is---the smallest cut can set a limb "on fire."  So Dr. S is changing one of my meds and switching it to a stronger one.  He also ordered some labs---one is to check my lactic acid level (at the request of the mito specialist in San Diego).  The last time I had it checked a year ago, the results were elevated..

This coming Tuesday, I have appointments with GI and Nutrition.  Unfortunately, the new medication I started a couple weeks ago hasn't been helping, and I still can't eat much.  I'm steadily losing more weight. :(

P.S. Please continue to keep Justina Pelletier and her family in your prayers.  Her health is getting worse by the week, she's losing her hair, and she's swollen all over.  This is a great article (written just today) by someone from MitoAction about the difference between medical child abuse and mitochondrial disease: http://www.mitoaction.org/blog/why-mitochondrial-disease-looks-nothing-medical-child-abuse  It also includes an update on Justina.  If you can't finish the whole article, read paragraphs 3 and 4.  We need to get her home!

Latest update!

I mentioned in my last post that I've been dealing with severe vertigo and a bunch of new, ongoing GI issues (nausea, weight loss, decreased appetite, stomach pain).  Well, my GI dr. and neurologist quickly got me in this week, and I'm so glad I was able to see them.  They're wonderful!

On to the not-so-good news:
I am down to about 79 lbs.  And I can hardly eat without getting terrible stomach pain and nausea.  It's most likely that I'm dealing with delayed gastric emptying which is dysmotility of the stomach..  This is common with mitochondrial disease.  See how mito can affect basically any part of the body? :(  It especially affects organs that demand a lot of energy like the brain, heart, muscles, GI system, etc.

Because of this, I have to be on a mainly soft food/liquid diet for now, and that's not good news since I'll probably lose even more weight.  Dr. P couldn't even hear any abdominal sounds with his stethoscope---this means the food isn't moving well out of my stomach.  He's putting me on a proton pump inhibitor drug and a compounded medication that will hopefully help this dysmotility issue..  I see him again and the nutrition therapist in less than 3 weeks!

My neurologist has come to the conclusion that the vertigo I've been experiencing for a whole month now is from an inner ear disorder (which usually happens after whiplash or concussions!).  I've never had either of those, but you know me. ;)  I'm not the typical patient!  At the appointment, Dr. G induced vertigo by doing these different maneuvers, and it wasn't fun at all!  She put in an order for me to have intense vestibular rehab.  She also prescribed a vestibular suppressant for bedtime to see if it will help me sleep better.  As you can imagine, it's very hard to get restful sleep with vertigo.

The CRPS pain has been ramping up again, too---my feet get really discolored, and the burning pain is just horrible.  I sent a message to my pain dr., and he told me he needs to see me for a visit.  I called to schedule an appointment, and he is booked until May 8th!  But do you want to hear an answer to prayer? :)  He has a cancellation in 11 days!

These symptoms on top of everything else has been challenging to manage all at the same time, but I thank and praise God for His mercies that are new every morning!

I just want to close with a quote a dear friend shared with me.  The last sentence that I highlighted gives me chills! :)
 

And so, perhaps in your life, you say, "I do not understand why God let my dear one be taken.  I do not understand why affliction has been permitted to smite me.  I do not understand the devious paths by which the Lord is leading me.  I do not understand why plans and purposes that seemed good to my eyes should be baffled.  I do not understand why blessings I so much need are so long delayed."  Friend, you do not have to understand all God's ways with you.  God does not expect you to understand them.  You do not expect your child to understand, only believe.  Some day you will see the glory of God in the things which you do not understand.

~~J. H. McC