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When David ended his post titled "Nerve Pain Is A Very Tough Thing", it seemed that Ashley's stomach pain was related to her nerves.  His time here in Dallas was ending after being here with Ashley for 9 days, and my time here in Dallas was beginning for 11 days.  There was one day in between when he left and I arrived that we transitioned the medical care duties from one parent to other.  There is so much information to be learned and shared after one of us has spent an extended period of time with Ashley that it really does take at least one full day to pass all of that information along to the next parent to successfully stay with her.

Before he went back to San Antonio, David and I also toured another medical facility in Dallas that offered more long term care vs. the acute care that she is receiving at CMC.  She was to work on getting stronger physically in order to transfer to that facility after about another week at the acute facility.  She would need to sit for about 10 hours each day for that program in order to be the most successful, so CMC would begin to push her even harder physically.

However, the more they pushed her in that regard, the more her body would rebel.  Four days after David had departed, she had a 5 hour episode.  Her longest one ever!  She was also continuing to pass out and was even doing so more frequently.  The day after her marathon episode, she passed out 21 times, all at different points throughout the day.  Walking to the restroom, standing up from a sitting position, sitting in a chair, working on homework, being pushed in a wheelchair, sitting in the bathtub, working hard at PT, screaming out in pain, etc.  The increased physical activity seemed to make the episodes and passing out even worse than they were previously.

When it became clear that Ashley was not going to be able to progress fast enough physically in order to attend the long term facility here, David and I discussed the possibility of bringing her back to San Antonio.  We decided it was in her best interest for her to go back home for awhile to regain her physical strength.  She would also be expected to do more for herself since we had decided to temporarily move her bedroom downstairs off the kitchen.

The stairs on our home had limited her self-care skills drastically, since she had the port surgery in Jan. especially.  For instance, because she had so much pain since the surgery, she was not able to come downstairs hardly at all.  We would have to bring her water and food often since the only way she could get down the stairs was if David carried her.  Add the pain from the surgery with the frequent and unpredictable passing out and one can see why having her on the stairs is just a terrible accident waiting to happen.

So, Ashley, Sadie, and I are scheduled to drive back to SA today.  We are waiting to be discharged from CMC in Dallas and plan to be on the road by 4 pm.  Our family will be reunited once again after many separations the last couple of months.  Ashley will be included in more family activities and family time because she will be downstairs where the rest of us are the majority of the time.  She will be able to get outside more often without the stairs being a barrier to that.  She will be able to go more places since she will only need to walk a short distance to get in the car from the front door to the car on the driveway.

However, she will have to be VERY disciplined about continuing to build her physical strength after becoming so de-conditioned.    She will be having PT and OT daily in the home.  She will continue to be fed through her NG tube that goes through her nose to her stomach while we continue to search for why she cannot eat solid food without incredible pain.  She will have to use her pain management coping strategies to survive her three hardest times of the day.  She will use these when it takes her an hour and a half to take her morning medications because of the pain.  She will also use them to help her endure the intense pain caused for the next hour and a half when she eats three bites of mashed up banana.  She will definitely have to use them at night when she tackles 2 hours of extreme pain when she takes her bedtime medications.  And, she will also have to wrap up school work as her junior year is quickly coming to a close.

As a result of all the things that she has to work on and she has to cope with, she will be limited to how much she can socialize with her friends.  This will be a hard restriction for us to enforce and for her to accept since she has not seen much of her friends the last couple of months and since she is such a social creature.  However, it is in her best interest to limit these times, so she can continue to become stronger and so she can focus on doing all that is being expected of her in order to be discharged by the doctors from CMC.  She will, therefore, look forward to seeing so many of you at Run for Roper on May 31.  She is so very excited for that day and for reuniting with everyone!

David, Ashley, and I will also develop a plan of action to continue to search for the reason WHY she cannot put anything (pills, banana, formula, pedialyte) in her stomach without extreme pain.  The doctors at CMC never investigated that and instead focused on her accepting her pain and managing that pain.  The three of us cannot accept that we still do not know WHY this is happening.  We will continue to search for answers, continue to search for doctors to help us, and continue to remain hopeful that she will be 100% healed.

We will also continue to thank all of you for your continued support, love, and prayers during our time adjusting back home, where Ashley's brothers will now see how she has to cope with the pain and where David and I will have to adjust to juggling Ashley's needs with meeting the boys' needs, especially at the end of the insanely busy school year.  We know it won't be at all easy, but we will be together as a family and will have God and the rest of you right by our side....

destination dallas #10

THIS POST IS OUT OF ORDER BECAUSE IT CONTAINS INFORMATION FROM AFTER THE POST "destination dallas #9" BUT BEFORE THE POST "Nerve Pain Is A Very Tough Thing".

As a postscript to my last post, I want to add a couple of important items.  We had two important events with doctors prior to our departure from Dallas on Saturday, April 12.  The first was with Dr. Brown, the first pediatric GI doctor we saw in the four person group and the one that admitted Ashley to the doctor at Medical City Children's for ten days.  The second was with an ER doctor at the same hospital.

When Ashley and I flew back to Dallas on Sunday night after prom, we had a follow up appointment with Dr. Brown the next day, Monday.  The appointment was a huge disappointment to us both because he was not willing to run any more tests to see why she was unable to eat because all of her tests in the hospital did not show anything of concern and because she is a complex patient due to POTS. Since her continued symptoms didn't match her test results thus far, he concluded she was exaggerating her pain.  Ashley also had an acute pain incident when we were with the doctor, but since her heart rate did not skyrocket during this time, he did not view the incident as very real, even though I reminded him that she is on medication to control her heart rate and her blood pressure.

Nothing, I mean nothing, is worse for a patient with chronic illness to hear such words and such doubt, especially from a medical professional that you expect to help you and to offer hope.  She does not want to live like this!  She wants to be able to eat.  She wants to be able to be at home with her family and with her dogs.  She wants to do things with her friends.  She wants to be able to keep up with her school work.  She does not want to be hooked up to liquid feedings.  She does not want to only be able to drink chick-fil-a lemonade and diluted chicken broth.  She does not want this lifestyle.  Why in the world would she make this her lifestyle?

Even though the doctor knew she could only control her pain with small dosages of the morphine, he refused to give her a prescription for it.  When she asked if he would admit her to the hospital again, he said no.  His opinion was that if one needed morphine for pain that he/she should be in the hospital.  He indicated that he would manage her TPN feedings by writing weekly presciptions for it until we were able to have our appointment with Dr. Brigman in SA on April 23.  He also recommended a pain management clinic in Dallas where several different specialists would be working together on her complex case.  That clinic, however, needed Ashley's medical records to review before the patient would know if he/she were eligible for an appointment.  Appointments were then being made for July!

Needless to say, we left the appointment feeling defeated and lost.  We truly felt that the doctors in Dallas would keep digging in order to find out why her body was not able to tolerate any food other than diluted chicken broth and Chick-fil-A lemonade after taking pain medication beforehand.  We knew there were other tests that could be performed.  We now knew that they were unwilling to do those tests and that they felt her case was too complex due to her POTS and due to the fact that her continued pain did not make sense based on the tests that were run.  Of course, Ashley turned to me for comfort and direction, but I needed a few hours to process what had just occurred and to figure out our next steps.  We scheduled a follow up appointment with Dr. Brown for April 17, Thursday, as he had requested.

I decided to make an appointment with Dr. Patel here in SA in hopes that he would manage Ashley's TPN until we could get in with Dr. Brigman on April 23.  Managing TPN is almost always a GI doctor's job, but given Dr. Patel's brilliance and ability to work locally with Dr. Brigman, I thought he may take on the task if I could explain our last few weeks in Dallas with him during an appointment.  When I first called his office, though, his receptionist said she could not give us an appointment until May 1st!  When I explained the situation to her, she said she would ask him at that moment about managing the TPN feedings  His response to her was that he would need to see Ashley's medical files from Dallas in order to decide that.

I called him again the next day after having Dr. Brown's office fax over those records to him and to the Dallas pain management clinic.  This time I had to beg two receptionists to fit Ashley in on April 14, Monday.  She was finally given an appointment with Dr. Patel on that day at 2:45 pm, which would coordinate well with our flights to SA on April 12 in honor of the twins' birthdays.  Until that time, we would rest Ashley's very tired POTS body, continue monitoring her TPN feedings, and begin to transition home health care while she attempted to work on school work.

By the time April 12 rolled around, Ashley's abdominal pain had increased and she felt like her body was "shutting down", and she did not think she could make it to her appointment with Dr. Patel on April 14.  When our plane landed at around 9:00 am that Saturday morning, she was in so much pain that she asked David to immediately take her to Methodist Children's ER.  At this point in the story, Ashley's dad's post titled, "Nerve Pain Is A Very Tough Thing", continues where this post left off.  So sorry the posts are a little out of order.....

run for roper

Hi everyone!  This is Ashley.  I just wanted to say "thank you" to all of you who are praying for me and helping our family.  You all have been an amazing blessing and I am so thankful for you.

A couple of months ago some friends of mine came up with this neat idea to do a 5K Fun Run in my honor.  (I have some GREAT friends!!)  So I want to support their efforts and help spread the word.  If you're interested, here's the scoop & the link:        

Join us 9AM, Saturday, May 31st at Walker Ranch Park for our first Run For Roper 5k Run/Walk! There will be music, food, fun activities, and you can bring all of your friends and family too!

            Run For Roper is taking place to raise funds for a very loved member of the community, Ashley Roper. Ashley is a student at Churchill High School and is one in a family of six. Ashley Roper suffers from Postural Orthostatic Tachycardia Syndrome (POTS). POTS can be very debilitating and some of the symptoms include fainting, extreme fatigue, nausea, and muscle weakness. It mainly affects the hearts ability to pump blood throught your body, specifically when standing up. Because of this it can cause almost any daily task to become very dificult. Ashley is no longer able to attend school anymore, and spends a lot of time in hospitals. The hospital bills can add up fairly quickly, and all earnings of the event will go straight to the Roper family. They will then decide how it gets distributed to both Ashleys hospital bills, as well as POTS research or local charities. 

We're asking you to help us support the family of Ashley Roper and come out to run, walk, jog,  skip, or even hop this 5k with us! Your support and participation can make a HUGE impact on a very deserving family! 

Event schedule and times

Parking will be limited, so additional parking will be at Embassy Movie Theaters and we will have shuttles for transportation provided by Mercedes Benz of Boerne. The race is scheduled to start at 9am but we ask you to come an hour prior for check-in and packet pick up (shirts, bibs, and additional merchandise)! 

There will be late registration at the event for $40.00 so bring a friend!

Wear proper clothes and shoes for walking/running and bring some extra money to purchase raffle tickets, merchandise, and for our donation buckets!

Any extra donations will be accepted both at the event and online at http://runforroper.myevent.com/ All donations are accepted and are supporting a great cause.

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