destination dallas #8

When I finished writing my previous post, the time was approximately 1:30 am on Wednesday morning.  At 2:00 am that same morning, Ashley called me from the hospital.  She was crying hysterically and in extreme pain.  Being the thoughtful one that she is, even in such dire straits, she said I did not need to come to the hospital.  I told her that I was coming!  I instructed her to call her night nurse, Rachael, and ask for the morphine and ask that Rachael stay in the room with her until I arrived there.  I continued to talk to her as I drove to the hospital and made it by her side within 30 minutes of her calling.  After the incredibly scary experience she had with the unbearable pain on Friday night, she becomes understandably frightened anytime the pain begins to shoot up quickly beyond a level 9.

I have to add that when I walked into the hospital I turned to look at the room of the 9 year old patient that went to be with Jesus when I left the hospital just a few hours earlier.  My heart sank and my tears began as I noticed that the snacks on the counter in the hallway had disappeared, that the emotional family and friends in the hallway had departed, and that the room was empty with the exception of a cleaning service diligently working.

I could not have gone to sleep for the 30 minutes I did before Ashley called and needed me at the hospital if I had not written about that experience in this blog.  I still cannot walk past room 617D without thinking of the heartbreak and agony I so vividly witnessed of the patient's friends and family, especially those of the parent and sibling.  Ashley and I have asked the nurses where we can make a donation in honor of that young angel, and the nurses are gathering that information for us.  I will keep you posted in case you want to make a donation as well.

I slept by Ashley's bedside from 3:30 to 7:30 am until Dr. Russo arrived.  As if the difficult night Ashley had and the trauma of the cancer patient's death were not enough, our visit with the doctor continued the day's downward spiral.  In a nutshell, he inferred that since Ashley's symptoms did not yet have a cause based on the tests that had been run, that what she was experiencing must instead be the result of the continued stress POTS places on her body.  I could see the devastated look on her face as he explained his thinking process. I knew for a fact that the pain she was feeling was not due to stress from POTS.

I had been with her in this state of pain for the past week, and I knew something was clearly and seriously wrong. She knew this, too, but that did not change the fact that his words were very upsetting to her and to me (and to her dad when he was later informed).  We felt as if he was not going to look further for a cause of her pain, but instead was giving up on finding an answer.  To us, though, her difficult case that was not yielding any clear answers, meant that he and the three of us should keep persevering until a clear answer was found.

The rest of the day was full of lots of emotions and plenty of tears.  Ashley was mad that an answer had not been found for the pain yet.  She mentioned that she was more scared of NOT having a diagnosis than she was of having one.  She would cry because she felt like the doctor believed in her initially, but now since her symptoms did not match any test results thus far, he seemed to discount what she was feeling.  I knew as the day progressed that I would need to sleep at the hospital that night and was grateful for Uncle Jeff coming to sit with Ashley while I went back to the RMHD to shower, etc.  The two of them enjoyed sharing Roper stories, and there are PLENTY of them since the family is gigantic!

As I was laying in bed with Ashley that night as she cried herself to sleep, it became clear to me that somehow, someway, with the grace of God, I had to see that she was home long enough for prom on Saturday night.  I began devising an elaborate plan in my head of how to make that happen, knowing that if I had the plan in place and that if I had informed David of the plan, that she would feel at peace with what I had schemed.

Once again, I called on Uncle Jeff for assistance in obtaining flights using mileage points from Dallas to San Antonio.  I located a salon across the street from the hospital that would take care of shaping Ashley's eyebrows to her liking.  Amazingly, it was so close that I would be able to wheel her there in her wheelchair! I confirmed with folks in San Antonio about certain prom details that still needed to be worked out.  In my head, I outlined exactly what needed to be done each day in order for Ashley to attend the most important event of her high school years thus far, the Churchill prom.

The next day immediately began on a good start after a better night's sleep and after meeting with the new doctor in the practice, Dr. Whitney.  Each doctor in the group takes a turn of having hospital duty for one week at a time, staring on Thursday of each week.  Dr. Whitney was very knowledgeable when answering the growing list of questions I had.  The most important thing she said that day, though, was that Ashley should stop trying to drink clear liquids in addition to the TPN feedings.  She made the point that Ashley's stomach was obviously very irritated right now and that giving it a rest from what was causing the irritation was needed.

By receiving the TPN feedings, Ashley is getting 100 % of the nutrition that was needed.  The feedings are adjusted each day based on how well she tolerates them and based on her morning blood work.  Orders for her next TPN feeding are submitted by 11:00 am following the 6:00 am lab results.  Vitamins, electrolytes, blood sugar, etc. are taken into account, and the new feeding is delivered at 6:00 pm, once the hospital pharmacist has developed the liquid contents.

Ashley felt better throughout the day since she was not trying to push the clear liquids.  Her previous feeding had ended at 5:00 pm, so we enjoyed the freedom of not having the large and heavy IV pole in tow when we went across the street to the salon.  However, after her eyebrows' session ended, her stomach began to grumble due to hunger.  We both felt it was wise to try drinking some lemonade and gluten-free chicken broth for dinner.  There had been about 3 nights previously that Ashley could not sleep because her stomach grumbled so much because she was hungry, but unable to eat.  Keep in mind, though, that she was still unable to drink clear liquids or to take her oral medications unless she first took pain medication.

I slept at the Ronald McDonald House that night and took a lot of things home from the hospital that had accumulated over 9 days time.  Dr. Whitney was willing to release Ashley on Friday sometime in order to fly to SA on Saturday morning to attend prom that night.  However, there was a great deal to be done by then in order for her discharge to successfully happen.  Easing Ashley's fears of leaving the hospital without doctors and nurses to manage her pain with medication was at the top of the list.  With the pain on Friday night having been at an unimaginable level and with the pain having been close to that scary level a few other times, this task would not be an easy one!  I was at peace with the plan I had devised, however, and kept telling her that, which seemed to help. 

The other big issue was getting all of the home health care details worked out on such short notice. Again, this was not an easy task since we would be needing those services in Dallas on Friday night, then needing those services in San Antonio on Saturday and Sunday, and finally needing them in Dallas on Sunday night before going back to the doctor for a follow-up appointment on Monday at 2:00 pm.  The social worker at the hospital was able to get the ball rolling on this on Thursday, which allowed me to meet with the home health care personnel on Friday before Ashley was discharged.

One should realize that Ashley has reached a higher level of medical care with the addition of home health care for her TPN feedings.  She must be unhooked from her feedings at 5:00 pm each day and then hooked up to her new feedings at 9:00 pm each day.  The home health care nurses are much faster at doing this than David and I will be for a long time! Careful attention to detail must also be taken during both of these processes since the line from her port is directly linked to her heart.  Any infection to the line or the port itself could be very serious, so the unhooking and new hooking processes include meticulous hygiene and a solid focus from all those involved.

I arrived at the hospital Friday morning at the usual 6:00 am time, after my typical 4 hours of sleep prior.  Dr. Whitney stopped by about 8:00 am and indicated she would proceed with the discharge instructions.  My main question for her was if she would request that the 24 hour urine test results be expedited.  The specimen was shipped to another state on Tuesday, and from one of the young nurses, we learned that those results would not be back for 6 to 8 days.

With our follow-up appointment with Dr. Brown (the doctor in the group that had seen Ashley twice prior to admitting her to the hospital) being on Monday at 2:00 pm, I knew information from that test would be critical for him to know how to proceed.  Dr. Whitney said that those tests can often take up to 6 weeks, so she did not see anyway that the results would be available sooner than the 6 to 8 days time frame.  

I spent the day gathering 10 days of medical records from the hospital in order to have them readily available when we were back in San Antonio under Dr. Patel's care once again.  I also met with the hospital's social worker and had two meetings with home health care professionals.  Once Ashley was unhooked from her feeding at 5:00 pm, nurse Jenn helped me load up the car with Ashley riding shotgun!

Ashley was very scared to leave the hospital without knowing what was wrong with her stomach and was extremely worried about being so far way from the place that provided the relief from her intense pain.  I quickly diverted her attention away from these feelings, though, when I drove her across the street to yet another salon for a manicure and pedicure for prom.  The timing could not have been more perfect as her tears turned into smiles when she began to realize she was officially getting ready to go to prom!

The rest of the night was spent unloading the car, sorting through it all, and then packing our bags for our 8:00 am flight to SA on Saturday morning.  The home health care nurse also came by to hook up Ashley to her TPN feeding.  Prior to her arrival, two large boxes were delivered to our room.  One was a heavy box of her liquid feedings for 4 days that arrived in a styrofoam cooler with dry ice. The other was a box full of medical supplies - alcohol swabs, rubber gloves, tubing, needles, syringes, a pump, a backpack, and even batteries.  We now had  everything that was needed for the next 4 days for Ashley to be fed.

After 5 brief hours of sleep, we woke up at 5:00 am to catch out flight out of DFW.  We knew the drive there was about 40 minutes, and we knew it would take awhile for me to push Ashley through the enormous airport with one hand while pulling a suitcase and cooler and carrying two purses and a tote bag.   Fortunately, Uncle Jeff's suggestion to utilize the valet parking for a slight fee made this process easier.

Getting through security, however, proved to be more of a hassle.  All of our bags had to be hand checked due to the medical supplies and the liquid feedings.  Ashley had to have a pat down since she can not quietly walk through the screening sensors without them making a lot of noise!  We even had to provide medical documentation from the doctor stating that the liquid nutrition was needed to sustain Ashley's life.  Crazy!  All in all, we spent 45 minutes getting through security.

After being wheeled to her airplane seat in the airplane transfer wheelchair, the American Airlines plane departed on time.  Ashley and I became so excited!  We could not wait to be home after all this time, and she could not wait to go to prom!  She was still in a lot of pain despite the medications, but her happiness was overriding the pain at the moment!  This happiness continued throughout the weekend, and she said she felt like attending prom was a dream come true. At times, she had to pinch herself because she could not believe that being there was really happening!

David and Chris met us at the airport with Sadie in a shopping bag!  They placed her on Ashley's lap, and she immediately remembered Ashley and started giving her kisses.  Chris had grown so much that I thought he was David when they were both turned around. and Ashley and I initially saw them from a distance.  From there, David loaded Ashley, Sadie, and our luggage in his mid life crisis car, so they could begin their day of prom preparations.  Chris and I headed to the rental car site via shuttle, and he thoroughly enjoyed being the one to pick out the specific car!  

David first drove Ashley home to drop off Sadie and our luggage.  They then went to have Ashley's hair fixed.  The best part of this time for Ashley was getting her hair washed.  This is something that is quite a challenge these days with her port being accessed and hooked up 20 hours of each day.  The port can under no circumstances get wet, which means that I must help bathe Ashley and tha she has to have her very long hair washed at a beauty parlor.

Next, Ashley took a 20 minute nap at home while sitting upright on the couch with her knees in a ball to fight off abdominal pain.  They then went to the mall for Ashley to have her-up make done.  Once they were home after that, Ashley began getting dressed for prom.  Not an easy task since she was hooked up to the TPN feeding still!  David drove Ashley to Casey's house and then to Kelsey's house for pictures before picking up Ashley's date Austin at his house.  The home health care nurse met them at Austin's house, so her TPN feeding could be unhooked.

From there, the three them drove to Landa Library for group pictures with the other 28 people on the prom shuttle bus.  All of the kids looked so beautiful or handsome, and Ashley was beaming for being able to be a part of it all.  She had previously hired her brother Chris to be her photographer.  Following an hour of pictures, the chartered bus departed for Brio restaurant at La Cantera.  David followed the shuttle from pictures to the dance, where the home health care nurse named Tony met up with Ashley, David, and Austin.  Tony hooked Ashley back up to her TPN feeding in the mid-life crisis car while David and Austin waited nearby and chatted.  This process took about 45 minutes and meant that Ashley would have her backpack with the feeding inside with her as she went into the dance.  Since her port is under her left breast, she decided to have the tubing come up towards her neck and then exiting under her armpit.  Amazingly, you can only see a minimal amount of the tubing in some of the prom photos.

When the prom was over, the shuttle bus took the 15 couples back to one of the girl's homes.  Most of the kids would hang out there for a prom after party, but Ashley chose instead to come home with Austin to watch some March Madness!  Her friend Taylor, who was in town from Cal Poly, and her friend Colton, who attends Texas State with Austin, came over to join them.  David ended up going to bed before the guys headed home, so Taylor carried Ashley upstairs to bed at about 2:00 am before they all departed. 

And,, the night came to an end.  A night where Ashley was able to be a typical teenager and enjoy prom with her peers.  A night where she was able to look and feel like a princess.  A night where she was catered to by her date Austin and her dad, too.  A night where, all too briefly, she was able to forget that she still cannot eat table food.  A night where she still had to use her wheelchair and still had to have help walking short distances and standing up at times. A night where she was a beautiful princess.  A night where she was  so happy and so stunning.  A night she will always remember.

On Sunday, David had to work until about 2:00 pm, and I had some more time with the boys.  We went to Super Target and picked up some much needed groceries and other items they needed such as lead for their pencils at school.  We enjoyed a nice lunch out on the patio at Mooyah and discussed Josh and Ryan's upcoming 12th birthday on April 11.   We stopped at Academy on the way home so that the twins could show me some birthday gift ideas.  I then dropped Chris and Josh at home to unload and put away the groceries while I took Ryan to baseball practice.  David arrived home at some point and awakened Ashley to do homework before she and I departed for the airport.

We left San Antonio on a 7:00 pm flight and looked at prom pictures during the entire 1 hour flight!  Our car was waiting for us at the valet station outside terminal D, and I was so thankful for that service since we had departed from terminal A!  Riding the DFW skylink while pushing a wheelchair with 2 extra bags on the bag of it, pulling a suitcase with a cooler on top of it, and carrying my heavy purse would have been more than cumbersome when I was already running on fumes!

We thought a home health care nurse would be meeting us at the RMHD at 9:30 pm to hook up Ashley's new feeding, but the nurse instead talked us through the intricate process over the phone.  This took about an hour, and we then upacked and collapsed in bed more tired than ever!  Before going to sleep, Ashley looked at more prom pictures and again thanked me for somehow getting her to prom.  I was quick to remind her that God and so many others helped make it happen, too.  The fact that she attended was truly by the grace of God and truly a miracle.  Thank you to all of you, especially Debby Villers, for making that magical night happen for our precious princess.

We both needed a lot of rest before seeing Dr. Brown Monday afternoon.  I could feel my body ache from exhaustion throughout the day, and Ashley needed a lot of sleep to recover from the marathon prom day and the travel as well.  We met with Dr. Brown and learned the 24 hour urine test results were still not available.  Bummer!  We need those results to know how to proceed.  Although it is unlikely she has porphyria because it is so incredibly rare and because she is not of Dutch or African-American lineage, we need to rule it out before testing for other things.  The results are expected before the end of the week and even if they are positive, Dr. Brown and his group would not be able to treat it, as she would need a different type of specialist. 

The chances of her having been exposed to metal are also incredibly rare because of where we have always lived, but should that turn out to be positive, she would also need to be treated by a different specialist.  Should both of those tests be negative, Dr. Brown recommended that she attend a pain management clinic with a multidisciplinary approach.  There is one here in Dallas at Children's Medical Center, which we would like to get her in to if we can for an initial evaluation.  In the meantime, Dr. Brown is going to manage Ashley's TPN feedings since she has to be fed and still cannot tolerate clear liquids.  He wrote the orders for the next week of feedings and those should arrive at the RMHD on Tuesday.  She will continue to be on a 20 hour feed but will be given more calories to hopefully replenish the 3 pounds she lost over the last two weeks.

Our next steps are not yet clear, and David, Ashley, and I have a lot of reflection and discussion to do.  We have a follow up with Dr. Brown in 2 weeks to see how she is tolerating the increased calories he added to the TPN feedings.  We do have an appointment on April 23 with the pediatric GI doctor in San Antonio we have waited 6 months to see, despite multiple efforts by her POTS doctor to fit Ashley in sooner.  This doctor could very well be our second opinion doctor.  And, most importantly, we still do not have a diagnosis of what is causing the severe abdominal pain that can only be slightly alleviated with pain medication prior to drinking clear liquids and taking medication.

So, this is where we need your prayers.  Pray for the three of us to have clear direction.  Pray for answers to be found somehow, MUCH sooner rather than later.  Pray for the TPN feedings to be as temporary as possible since the long term side effects could be damaging to her liver.  Pray for our family of 6 to be sustained despite still being in 2 cities at the moment.  Pray for David and me to have much needed rest as we are continually making critical medical decisions, with Ashley's input of course, about her care.

As I wrap up this novel of a post, I again want to thank each and every one of you for your prayers, love, and support.  There are so many people doing things for David and the boys, so many things of which I know I am not even aware.  There is my wonderful boss, Janet Scott, at UTSA that is stepping in for me while I am away.  There are people driving the boys to practices and games when David cannot do so.  There are people making donations to the Fundable account established for Ashley's medical costs.  There are people texting, calling, e-mailing, messaging, sending Ashley mail and packages, and reading this blog because they care so much about Ashley and our family.  There is just no way for me to sufficiently express how much this means to all of us, so I hope you all will always know we are truly grateful, from the bottom of our hearts.

At the same time, I realize that it may be rather frustrating to you if we cannot return your phone call, if we cannot write a proper thank you note for a gift, if we cannot respond to your text, or if you feel out of the loop about this complex medical situation.  However, we are doing the best that we can with all that we have to juggle.  We must prioritize each and everyday what is most important, and some days that is simply taking care of Ashley and taking care of the three boys.

Ashley, in particular, needs a lot of rest and cannot text, tweet, etc. very often.  Keep in mind, too, she is still trying to stay on top of her school work in the midst of this storm.  So, while we truly NEED your prayers, love, and support to weather this most difficult storm and while we definitely appreciate these more than we can ever fully convey to you all, we also pray that you will understand the critical need for Ashley's medical care and for our family's well being to be of utmost priority. . 

Until next time....