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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....