Another trip to the ER....this time by ambulance :(

Hey friends,

Please pray for me.  It's a long story, but since Saturday, I've been dealing with bad headaches every day and just feeling plain crummy.  I thought maybe I had another bladder infection, so my PCP's office told me to go to urgent care to check Tuesday evening.  Well, it turns out I don't have one, but I think I'd rather have that since it's treatable!  TMI, but I'll just state the facts: they found I have high ketones in my urine (my liver is forming too many ketone bodies and excreting it in my urine).  This is what that means---my GI dr. and the urgent care dr. said my body is basically in a starvation mode and is burning fat (instead of sugar) for energy.  Mitochondrial disease, protein-calorie malnutrition, and failure to thrive (all things I'm dealing with) don't go together. :(

Yesterday, things went downhill.  My weakness got worse, I was so hot from burning so much energy, and the nausea was so bad.  My parents had to call 911.  I thought I was going to pass out! :(  The paramedics had to use a sling to carry me out and put me on a stretcher.  I was taken to OHSU where they gave me a bunch of IV pain/nausea meds and IV fluids with dextrose.  In just 2 weeks, I've been poked a total of 8 times just for blood draws and IVs.

I'm home now because I started perking up after all that they gave me, but I am still so sleepy and weak.

My GI dr. and the nutritionists recommend that I start using tube feeds 24 hours around the clock, so please pray that things will start looking up and that I'll feel better.  I may have mito, but it won't have me!

I have touched the scars upon His hands, 

To see if they were real.

He has walked the road before me, 
He knows just how I feel.
When you feel there is not anyone, 
Who understands your pain, 
Just remember all of Jesus' suffering.

-from one of my favorite songs by Jeremy Camp ("Healing Hand of God")

Another trip to the ER.....

Suffice it to say, I am "ER-ed" out.....I just can't stay away! jk ;)

But first, let me rewind a little bit:

On Thursday, Aug. 7th, I had surgery for a jejunostomy feeding tube placement.  Thankfully, everything went well, but there were still some complications and setbacks.

1. After surgery, my heart rate was way "too high," as the nurses put it.

2. I had a low grade fever, something the team monitored closely in case it turned into Malignant Hyperthermia (which I'm susceptible to based on genetic testing).

3. I had to spend several long hours in the PACU (post-anesthesia care unit) because of breathing problems which continually set the alarm off.  The team ended up having to use my CPAP machine.

4. I had almost a whole LITER of fluid in my bladder!  The doctor was astounded!  I couldn't empty it on my own (because I have a neurogenic bladder), so they ended up having to place a Foley catheter---such a painful procedure! x[

5. During surgery, they wanted to place an arterial line in my arm to continually monitor blood gases....my blood work got so out of whack.

6. Over the course of this hospital stay, I had to be given 6 liters of IV fluids because my potassium kept dropping very low!

7. The dr. said I bled a lot during the surgery, even though this was laparoscopic (minimally-invasive).

Anyways, I got home from the hospital Saturday evening!  I was sent home with a long list of medications to take, including some stronger pain meds because having CRPS makes my nervous system more sensitive than normal.

Monday night, I noticed the J-tube site was bleeding a little bit, but I just tucked some gauze near the area and went to bed.  Well, at 1:30 in the morning, I woke up to wet blood on my sheets and pajamas.  I groaned, knowing where this was going to lead me.  My mom called the GI surgery resident on-call, and he said to go to the ER if I was bleeding at the central part of the J-tube.  So to the ER we went!  As you can imagine, this was unwelcome---here I was sleeping peacefully! ;)

When I arrived at the OHSU ER, they got me right in and even put me in the pediatric side (Doernbecher's) so that I wouldn't have to wait at all.  It's a bad sign when the emergency dr. knows you and is familiar with your case.. ;)

The nurses were concerned about all the blood.  The dr. quickly called Surgery to come.  What followed was very unpleasant and so painful!  The dr. washed and cleaned the area aggressively to try and see where the bleeding was coming from.  She had to use scissors to remove thick blood clots....that part wasn't nice to watch. ;)  The bleeding still kept coming, so she eventually had to suture the place up again.  Thankfully, that did the trick!

I have a follow-up with Surgery on Friday.  They're going to remove these things at the J-tube site called bolsters (which are currently anchoring my small intestine to the wall of my abdomen).  And in a few weeks, I get to have the tube changed to a "low-profile button." :)

Today I started feeds at a very slow rate.  Here are a couple pics:

This is how I put medications through my tube!

I receive high-calorie formula through the feeding tube. :)

Thankful.

On Wednesday, I had a bilateral lumbar sympathetic nerve block, and the best news of all---it was a successful block. =)  I'm so so thankful to the Lord for this pain relief!  Within minutes, my pain went from 8 to 0 on a pain scale of one to ten!  My legs and feet still feel amazing.  Nerve blocks are temporary, but my pain dr. used a combination of meds to try and make the pain relief last as long as possible!

My neuro-ophthalmology and spine follow-ups this past week went well.  As I mentioned before, my left eye can't move to the left at all, but the movement in my right eye is still intact which is great news since that can change quickly..  The spinal curvature is stable as well, so I only need to see my spine dr. on an as-needed basis! :)  The day of my J-tube surgery next Thursday, he wants his assistant to send him an email to remind him that I'm having surgery because he wants to try and visit me on Friday if he has a chunk of free time.  He's so sweet!

I finally figured out why I've been dealing with bad insomnia at night.  The mito specialist started me on a high-dose antioxidant which I'm supposed to take twice a day.  And one of the side effects is insomnia!  So because of that, my sleep dr. is starting me on a "non-habit forming" sleep med.  I hope it helps---not getting enough sleep has been aggravating all my GI symptoms.

I've been losing more muscle in my legs, too.  It's hard to see them getting smaller and smaller....my balance is more affected as well, so my physical therapist is having me start using Neuromuscular Electrical Stimulation (NMES) to try and slow the muscle atrophy.  I'm so blessed to have such dedicated therapists work with me every week.

This coming Tuesday is my pre-op appointment, and Wednesday we'll receive the call when the J-tube surgery is on Thursday (8/7).  The surgery will be laparoscopic with many small incisions.  The surgeons are going to fill my abdomen with co2 to see better...sounds uncomfortable! ;)

Thank you so much for your faithful prayers and support as I start another part of this journey!