destination dallas

You may find that this blog post sounds differently than ones written previously.  You see, I am writing Ashley's blog entries while we are in Dallas for two weeks attending the POTS Treatment Center.  When we met with the doctor for the first time on Thursday, she asked that I be the one to update others on Ashley's progress.  She also advised Ashley to only communicate with a few friends.  She wants her to be as relaxed as possible while having treatment, in order for her to be as engaged as possible, so that the treatment can work most effectively.  Although Ashley was not at all thrilled with these requests, I am proud to say that she has been following doctor's orders well.

We left San Antonio on Wednesday, March 5 around 4:00 pm.  We stopped in San Marcos, so Ashley could see her college friends at Texas State - Hayden, Austin, and Colton.  They enjoyed dinner at Chipotle near campus while I ventured to the outlet malls and purchased a much needed new purse, wallet, and cosmetic bag.  From there, we continued north on I - 35, stopping on the North side of Waco for gas.  There was then a little construction traffic, and we found ourselves arriving in Dallas at 11:30 pm.

Even though there was a room available at the most impressive Ronald McDonald House that night, we arrived knowing that we would need to stay that night at the Holiday Inn instead due to the late hour we arrived.  After bringing most of our luggage up to the fourth floor room, we collapsed into bed.  By that point, I had been awake for 32 hours straight.

As we were turning out the lights, Ashley mentioned that she had been bit by some bugs and that the bites were bothering her.  After a few minutes, she mentioned that the bites were keeping her from falling asleep.  I gave her a small dose of melatonin to help her drop off to sleep before dropping off myself.  After about an hour, however, Ashley woke me up because she was itching so badly all over
her body she was unable to sleep.  I was in a very deep sleep by then, and waking up to comprehend
all that she was experiencing was difficult.  After seeing the extent of the rash as well as some swelling on her body, I decided to call David.  Of course, he was in a deep sleep also, but between our two sleepy brains, we agreed I needed to call Ashley's POTS doctor in San Antonio.

He returned my call immediately and suggested I give Ashley a teaspoon of Benadryl.  We are always so hesitant to give her Benadryl because it makes her sleepy for about 5 days.  I did not want her to be sleepy for the beginning of treatment but knew I had to give it to her because of how fast the rash was spreading up her body.  Dr. Patel said that if the rash began to go up to her to her eyes, face, and neck that I needed to take her to the ER.

As luck would have it, we did not have any Benadryl on hand, despite packing the kitchen sink!  So, I loaded Ashley and her wheelchair back in to the car and headed out to a 24 hour pharmacy.  David
was on speaker phone in the car directing us through the dark streets of beautiful Highland Park while Ashley was itching like crazy next to me, and I ran numerous red lights!  The plan was to go the drive thru lane and ask for Benadryl so that I would not have to take time getting Ashley out of the car and into her wheelchair to get into the pharmacy.

Of course, the drive thru was closed at that hour, and I ended up leaving Ashley on speaker phone with David while I raced in to find the Benadryl.  I opened it at the register and left my credit card with the cashier before racing out to give the medicine to Ashley.  The observant clerk even said, " So you have an emergency?"  Yet, when I returned to retrieve my credit card, the same clerk asked me if I had a CVS rewards card to use.  Really?

As we drove back to the hotel, which was only a few blocks from the Dallas Children's Hospital, Ashley's rash was not responding at all to the Benadryl.  I went to the ER entrance, only to find out that I had to park down a hill, take out her wheelchair, and push her up the hill and then a ramp to get
into the ER.  What happened to the concept of  pulling into the ER driveway and having a nurse with a gurney come out to greet you?

After getting checked into the ER, we came in contact with a nurse, a resident, and a pharmacist.  Of course, none of them had any idea what POTS is, which is typical of every ER trip!  After taking Atarax by mouth so that her port would not have to be accessed, the ER kept an eye on her to make sure she did not have an allergic reaction to the medication that was treating her allergic reaction.  A supervising doctor came in the room at one point, and she had actually heard of POTS because a physician friend of hers came down with it after giving birth to her second child.

We were discharged from the hospital at 7:00 am and drove back to our hotel.  I promptly put Ashley back to bed, so she could get some sleep before her initial meeting with Dr. Kriprianou at the POTS Treatment Center.  I, however, was off to locate a 24 hour pharmacy that was closer than the one we had driven to in the middle of the night to buy Benadryl.  Thanks to Siri, I found one close by but would have to wait over an hour for the Atarax to be filled.  The only way I was going to stay slightly awake at this point was to go to Starbucks, which just happened to be a block from the pharmacy.  I ultimatley decided to stay up that morning and thoroughly dissect Ashley's mounds of medical records in order to be even more prepared to meet with the doctor that afternoon.

The Ronald McDonald House called with an available room again for that night, so after taking Ashley to the doctor for a couple of hours that afternoon and returning to the Holiday Inn for a complimentary very late check out, we drove a half mile to the Ronald McDonald House, our home for the next two weeks.

The facility is only 4 years old and truly amazing.  There are 60 rooms, each with 2 queen beds and a private bath.  There are family rooms with tv's, DVD players, and computers on each of the four wings.  There is a craft room, a play room, a game room, a teen room, a study room, a library with movies and books for all ages as well as a computer with a printer, a chapel, a large great room, an outdoor playground, a basketball court, a large dining room, a huge commercial kitchen, two family
kitchens, four laundry rooms (free of charge with detergent provided), two elevators, and 6 apartments in the transplant wing where patients and their families can live following a transplant or during chemotherapy.

The house offers 3 home cooked meals a day and has a family activity every night after dinner. Various volunteer groups sign up online to serve the meals 365 days a year.  They are responsible for buying the groceries, preparing the meal ahead of time, serving the meal, and cleaning up the kitchen afterwards. Volunteers will even deliver food to patients and residents living in the transplant wing so that those people are not exposed to others when coming to meals.

The Ronald McDonald House is my new charity of choice since Ashley and I have benefitted from their services while at the Mayo Clinic for 11 days and now at this house for over 2 weeks.  Their philosophy is that sick children heal more quickly when they are with their families and when the families can interact with other families also experiencing a medical crisis.  They realize how difficult a medical crisis is on the entire family and believe that families should not have to worry about a place to stay and their next meal to eat so that they can better focus on their child healing and on their family being together for the ill child.  We are so blessed to be here, and we are so grateful to have a
quiet and comfortable room while Ashley receives treatment for these two weeks.

In my next post, I will talk about our first meeting with the doctor as well as our second day at the
treatment center.  In the meantime, pray that Ashley is engaged and "healthy" during the treatment process.  Pray that I am attentive to her needs and that I get the rest I need to do so.  Pray for David and the boys back home in San Antonio to stay afloat with work, school, homework, activities, and care of our family dog Grace and Ashley's beloved dog Sadie.  We miss them so much already and wish we did not have to be separated.

Until next time....  Angela on behalf of Ashley