Nerve Pain is a Very Tough Thing

This is David, Ashley's dad. I want to give everyone an update on Ashley.  I'll try to be brief but it covers over 8 weeks of significant events so ... it'll take some time.

Ashley's been having stomach (GI) issues for 7 months.  One night before bed she had severe stomach pain for over an hour requiring us to take her to the hospital. They ran a few tests and couldn't find anything so they gave her some painkillers and sent us home, telling us to call a Pediatric GI which we did.  Unfortunately, there are only TWO (yes two) pediatric GI's in all of San Antonio ... and the next available appt was 6 MONTHS away (and our Adult GI doc would not see her since she was underage).  So we waited. 

And 3 ER visits for the same severe pain and many stomach issues later, my intelligent wife scheduled an appt w a Pediatric GI doc in Dallas while she and Ashley were scheduled to be at a 2-week outpatient POTS Treatment Center in Dallas over Spring Break. Two days after the appt Ashley once again had severe stomach pains. The doc admitted them to Medical City Hospital in Dallas in order to run tests more quickly.  They took Ash off of all food for 5 days to give her stomach a "break" and see if that helped.  Then they started her on TPN (basically liquid food that goes directly into her bloodstream via her IV port which she had surgically installed in January (with a VERY lengthy and painful recovery, I might add). After running several tests over 10 days, the doctors had not uncovered what was causing her severe stomach pain and recommended she simply go to a pain management program at Children's Medical Center Hospital in Dallas.  Angie, Ash and I felt that they hadn't fully searched for the "cause" of her pain and didn't want to simply cover up the pain with pain meds so, after they waited around in Dallas for 10 more days trying to get a doctor in SA to take over management of her TPN (we still hadn't seen a GI doc in SA), we brought her back home to SA in the hopes of finding the cause.

Ash was going downhill by the time she arrived at the SA airport and I took her straight to Methodist Hospital.  After 11 hours in their ER we finally were admitted to a room and started the search for the cause of her pain.  At this point, she hadn't eaten food in 27 days.  Methodist Children's was a frustrating experience.

There was a new attending pediatric doctor every 3-4 days with some taking a more (and others less) interested role in figuring out this complex case.  The good news was ... we finally got to see the 2 pediatric GI doctors in SA!  (Unfortunately, we alternated days in which we saw 1 and then the other.)  The communication from doc to doc was often a challenge, with one pediatrician in particular taking a cavalier approach, stopping ALL of Ashley's meds the first morning she was on the case (the meds, mind you, that took her POTS doctor 2 years to figure out what works and to properly titrate), then never determined what she was going to do, so Ashley didn't get her evening meds either!  Finally, after I raised complete hell, she got her meds at 2:30-4:30 am.  (Oh, and the doctor admitted around 10:30 pm that she hadn't really read her file fully yet.)  This same doc changed the Pediatric GI docs meds multiple times only to have the GI doc change them back.  All of this while Ashley was in extreme pain to the point of having to take morphine just to swallow her dozen pills twice a day b/c water and the pills made her stomach go into severe stabbing pain.  Angie spent every day at the hospital staying on top of the doctors and I spent every night there. It was a daily experience of following up on tests, making sure nurses weren't messing anything up (BASIC things like wearing gloves when they touched her IV port ... the slightest infection from germs on her port would have gone straight to her heart and caused the port to have to be removed and replaced ... it took 6 weeks for her to heal from it last time with extreme pain!  That's when she started taking morphine in the first place.)  It was so exhausting fighting with doctors and nurses on a daily basis.  While we liked our main GI doc, we had NO confidence in the hospital as a treatment "team".

Regardless, the SA docs ran virtually every conceivable test ... and still couldn't ascertain the cause of her pain.  In a nutshell, though, they determined that all of her "plumbing" (GI tract) seemed to be working relatively well.  Hence, the cause for her extreme pain must be that her autonomic nervous system (nerves in her belly) are hyper-sensitive and wildly overworking.  For example, a stomach pain that might be "5" or "6" to you and me is sending signals to her brain that it is a "9" or a "10".

We requested a hospital-to-hospital transfer twice from Methodist Hospital to Houston's nationally renowned TX Children's Hospital ... and were turned down both times reportedly because they felt she needed "pain management" which they apparently don't have.  They recommended Children's Medical Center (CMC) in Dallas.  After much deliberation, Ashley and I headed to Dallas' CMC while Angie spent some much needed time at home with our 3 boys.  (She had been gone with Angie in Dallas for 6 weeks followed by 2 1/2 more weeks of intense hospitalization time in SA.) 

CMC so far has been pretty amazing.  The first day here we were visiting by a never-ending parade of experts ... pain management, GI, psychologist, psychiatrist, nursing supervisor, physical therapist, music therapist, child life/art therapist, school director, quality assurance director, insurance/discharge ... not to mention the attending pediatrician, the resident pediatrician, and the senior resident. 

They clearly had a plan from the get-go as all of the medical experts had a relatively similar game plan in mind: no more tests trying to figure out what was causing the pain; instead they were going to treat the pain and get her back to living as soon as possible.  Their professionalism, confidence, and teamwork earned my and Ashley's "buy in". 

Step 1: No more morphine (the only drug that had brought some relief to Ashley's serious pain for 7 weeks multiple times a day.)  Morphine is bad for the stomach though and seriously addictive so none of us especially Ashley wanted to remain on it for any longer. 

Step 2: Stop having a "passive" approach (waiting for the doctors to deliver the next med, the next treatment idea, hoping to get better) and start having an "active" approach to life (deal with the pain and get back to life).

Following an extraordinarily painful first night (intense pain for over 5 hours, some meds but minimal, extreme anxiety in Ash and me as I tried to help her get through this), we learned what that "active" approach meant.  When the pain doc arrived early the next morning, I asked him what he was going to do medically for her pain and he said calmly and confidently, "Pain management is not about pain meds. It's about taking charge of your life. No pill we give you will take away all of her pain. It can help and it will, although it will take 1-3 weeks to build up in her system.  In the meantime, it's more important that she focus on what is in her power. Pain management is about Ashley learning how to tell her brain to tell her pain receptors "we're not paying attention to your pain signals any more" through distracters, mental imagery, guided imagery, deep breathing, etc. and eventually the pain signals will go away." 

Wow! After 2 1/2 years of Ashley steadily going downhill with POTS (more time in bed, getting out less, in wheelchair more, muscles deteriorating) and 2 1/2 weeks of scheduling meds on a daily basis with the doctors and nurses in the SA hospital so that she would be in the least amount of pain, this was a completely revolutionary way of looking at things.  He and the rest of this team essentially says, "The pain is real and it's intense. So what are you gonna do about it? Take charge of it. Don't let it stop you from living. Deal with it mentally (and as medically as much as possible) and eventually it'll go away (or at least lessen)."

When Ashley gets in intense pain now (it's chronic so she's in pain all day every day but it's also acute pain about 8-12 times a day), I've gone from running to the docs & nurses for pain meds for Ashley to saying, "OK, I know you're in pain. What are you gonna do about it?" and she often responds, "I'm gonna color as a distracter (or use deep breathing to calm her stress, or talk with me about her dog Sadie to distract her from the pain)."  She still gets pain meds but they are not anywhere near as strong as morphine. 

She has started eating again.  They took her off of the liquid food "TPN" in her bloodstream b/c it has a very high risk of infection and is potentially very bad for her liver.  She is being fed via an "NG tube" into her stomach (which was both painful going in and very painful as they started expanding her stomach from a very shrunken state back to it's normal size in a few days ... very painful.)

And, very exciting, two days ago she took her first bite of solid food in 7 weeks ... a slice of banana ... and her stomach was in intense pain for at least an hour.  It was hard to watch. I had to use "deep breathing" myself to calm my own stress while helping her cope with the pain.

Ashley's days are exhausting (physically, mentally, and emotionally). In addition to having to learn and use multiple coping techniques, she is also having to exercise a lot in order to re-condition her body.  On the first day, she was only able to walk to the bathroom with assistance. She is now walking part way down the hallway with assistance.  Due to her POTS, she passes out a lot.  (Today she passed out 20 times while walking 40 feet.  And her right leg and left hip tingled a lot.)

They still don't know exactly why her nerves are causing the extreme pain. They explained that our organs have been studied for hundreds and hundreds of years but our brain and nervous system have just recently been studied and we are in our infancy of understanding how they work. They just know that her nerves are over firing in her stomach.  One doctor called it AmplifiedMusculoskeletal Pain Syndrome (also known as ReflexNeurovascular Dystrophy) which, in essence, is a catch-all diagnosis (which includes fibromyalgia which Ashley has) in which the nerves over-fire for some unknown reason.

There is hope though.  The docs said they hope that they will be able to help Ashley reduce her pain from a 9-10 level down to a 5.  And that she will further train her brain to ignore the pain signals and get it down to a pain-free life.  That is our hope.

The one bright spot in Ashley's days lately has been her puppy, Miss Sadie!  Sadie has made frequent visits to see her via a friend of mine who lives in Dallas.  LeeAnn Young volunteered in my youth ministry at church for several years and is a big time dog lover!  She had facebooked me the day we were leaving for Dallas and said, "If there's anything I can do to help, please let me know.  I looked down and saw Sadie and thought, "This is a CRAZY idea ... but couldn't Sadie come with us if she had a place to stay?!"  So "Nurse Sadie" makes regular visits to Ash in the garden area of the hospital to cheer her up. And when Ash is going through bouts of pain, she looks at the frequent pictures of Sadie that LeeAnn sends throughout the day to help distract her from the pain.

Thank you, one and all, for your prayers!!  Your thoughts, prayers, and support has been incredible.  That has truly been an amazing part of this whole difficult journey ... that we have SO MANY PEOPLE who love and care about us!!

If you want to do something to cheer Ashley up, here are a few ways:

- Send her a text, email, facebook message, or card to our house (Just please don't expect her to write back as she has very limited time and energy to do so)

- Send her flowers (sunflowers & peonies are her favorites)

If you'd like to support her medical care, you certainly can do so via Ashley's medical fund at Chase Bank (210-494-2201) or via a GoFundMe.com account (search "Ashley Roper's Medical Fund" on that website).  Some friends of Ashley's at Churchill High School have also set up a 5K "Run for Roper" fun run on Sat, May 31.  Ash is determined to be healthy enough to be there for it!  If you'd like to learn more, click here.

So many of you have been amazingly supportive of Ashley and our family ... from yard work to helping drive our boys, to bringing meals, to sending us gift certificates while we're running to/from hospitals and doctor appts, to keeping Sadie while we're in Dallas ... INCREDIBLE LOVE.

THANK YOU!!!

May God richly bless you and yours, and may He heal Ashley soon,

David, Angela and family