destination dallas #4

Ashley's first full week of treatment seemed to go well, even though we ended up not going in on Monday.  On Sunday night, Ashley could not sleep.  She was up with a fever and chills and her intensified POTS symptoms that always increase in intensity when she gets something else on top of POTS.  Since she had such a poor night, I knew that treatment would not be a good idea, and the treatment center agreed with me.

In fact, they were able to help us out by getting Ashley in to an internal medicine doctor in the same building that very afternoon.  Her flu test was negative, but the doctor wanted to check her for mono and also do some basic blood work just to make sure there was not more going on other than the suspected virus.  With lots of rest that day, Ashley seemed better the next morning and well enough for treatment on Tuesday morning.

We met with Andrea, the psychologist, that day.  She explained how Ashley needed to breathe from her stomach, instead of her chest, so that her heart could help evenly distribute her blood throughout her body.  Andrea also explained the biofeedback computer screen in front of Ashley by telling us what each of the numbers and corresponding graphics meant on the screen.

We learned that Ashley's temperature on her hands relates to how well her blood is circulating.  Andrea established 96 degrees as a goal for Ashley to have for that temperature.  She also introduced Ashley to imagery as a way to focus on increasing that temperature.  Ashley, of course, thought about her dog, Sadie, and was able to get her temperature up to 94 degrees that day!  Andrea was impressed with her quick progress.

While Tuesday was a successful treatment day, Wednesday was not as much so.  Ashley was truly tired that day and not able to focus as much on what she needed to do.  She had really pushed herself in treatment the day before, which Andrea said is very typical for patients because they so desperately want to get better.  She encouraged Ashley to think of the treatment sessions as more of a time of relaxation versus a time of training.

Ashley slept very poorly again on Wednesday night, so I e-mailed the treatment center on Thursday morning to see if she could come in for an afternoon appointment instead.  They were able to move her appointment to 3:00 pm that day, which allowed Ashley to sleep in the morning.  She then performed well at treatment that day and worked for the second time with Dr. Townsend, who is the neurofeedback doctor in the office.  Dr. Townsend only works on Tuesdays and Thursdays, so Ashley had met her for the first time on Tuesday.

By Friday, Ashley was spending almost all of the time in treatment without my presence.  She was practicing the techniques she had learned from Andrea and Dr. Townsend and taking breaks during the at least two hour sessions.  Ashley was really wiped out after 5 days in a row of going to the doctor or to the treatment center.  She said that the treatment was much harder than she thought it would be.  She had to concentrate so hard during treatment, and she was so worn out when she her daily sessions were finally completed.

Friday was especially tiring for her due to having a second appointment in the afternoon with a Pediatric GI doctor we were able to see with only 3 days advance notice!  Ashley has been having a lot of abdominal pain since October, and these symptoms are getting worse.  She cannot eat foods she has been eating for two years since going gluten and dairy free.  Some days she can drink smoothies made with soy, and some days she cannot.  We have taken her to the ER at least one time due to extreme pain that caused her to cry out in agony.  As with most of her symptoms, we attribute this discomfort to POTS.  However, since Ashley has some POTS friends using feeding tubes, we are trying to be proactive in getting to the bottom of these issues.

Dr. Brown, the Pediatric GI doctor, was excellent!  Ashley was his last patient of the week, so he spent a lot of time with us and was very thorough.  I had brought 66 pages of previous medical documentation which he appreciated since he places a lot of value on previous medical records.  He had a clear plan of action for figuring out Ashley's GI issues and mentioned several possible diagnoses that we had never heard of (once again)!  We now must decide whether to come back to Dallas to have the testing done or to have it done in San Antonio.  We would like to get two of the tests out of the way before we finally see the pediatric GI doctor in San Antonio that we have had to wait 6 months to see.  The symptoms becoming more severe by the day, and we certainly do not want Ashley to lose any more weight.

So, are you now wondering how you can pray for Ashley?  Pray that she continues to be fully engaged in treatment for her second and final week.  Pray that she leaves Dallas with improved symptoms.  Pray that she clings to hope, no matter what.  Pray for me to be a wise advocate for her at all times.  Pray for David and the boys back home to stay afloat now that school is back in session and now that David has a very full week of work ahead of him.  Finally, pray that we can all show God's love to others even more so as a result of Ashley's health crisis experience.  As she and I have learned these past 12 days by living with families here at the Ronald McDonald House, there is so much heartbreak among these families with chronically ill children.  Specifics to follow in my next blog entry....