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.....