Fall Season Update

Ashley started her senior year at the end of August.  It is hard to believe she is a senior and that her brother Christopher is at the same school this year.  She is taking 6 credits to graduate and is working with two Homebound teachers.  The dedicated Debby Villers is one of those teachers, who continues to help her with math.  She actually did not need a math course to graduate but wanted to take a math class to keep up her skills.  Short term memory loss and brain fog are two of the symptoms of POTS, so she is hoping to alleviate some of that with a continuation of her math skills.  Definitely a sign of her determination as math is not her favorite subject and many other electives would have been easier to take instead!!!

About three weeks into the school year, Ashley woke up on a Monday morning and said that she felt as bad as she did when she first had POTS.  I knew that meant she felt REALLY poorly and called the White Glove nurse practitioner to come to our home.  That exam did not reveal anything of significance, but Ashley woke up later with a very high fever of 103.7.  I knew that indicated something more serious and when her fever continued to stay high, David took her to the urgent care that night.  As soon as the doctor there realized how high her fever was and that she had a port, she sent them directly to the ER.

At the hospital, she was immediately placed on IV antibiotics and given fluids while blood tests were performed.  They were admitted to a room for Ashley's 5th inpatient hospital stay since March.  The timing of this stay was particularly poor as Ashley and I were scheduled to fly to Rhode Island for my brother Matthew's wedding on Wednesday!  We were determined we would still be able to go, and Ashley made it very clear to every doctor she saw that she would be at that wedding!

As the week progressed, however, that trip did not materialize.  We traded the excitement of the trip for tears of disappointment.  Blood tests revealed that there was a staph infection in her port, which led to pneumonia.  This meant that she would be treated for at least 14 days by IV antibiotics since the line from the port went directly to her heart.  This also meant that the port would have to be removed.

So, instead of being at the fairytale wedding, Ashley was scheduled for surgery during the time the wedding was taking place in Rhode Island.  Even though David and I had discussed the idea that I would make the trip anyway, I ultimately decided I could not do that and feel comfortable enough being away from Ashley given her condition.  We both truly hated to miss the wedding but are grateful for the beautiful photos!

Ashley responded well to all of the antibiotics, thankfully, but the hospital stay seemed to last forever.    She was inpatient for 21 days and also had to begin eating by mouth again since the TPN feedings had been via the port and since her GI tract was shutting down since it had not been used for so long now.  She also had her fourth feeding tube placed and started using formula feedings to supplement eating by mouth.

Once we were finally home, she focused on her school work and college applications, which she had amazingly kept up with to some degree while hospitalized.  She even managed to finish the first quarter on time due to her hard work AND found out that she was accepted to Baylor University for next fall.  That news was definitely the highlight of the fall as she has worked so hard to achieve that goal despite feeling poorly for 3 years.  Her dad and I are so proud of her!

We continue to search for answers for the constant severe abdominal pain that is made worse by eating or taking medications.  Prior to the hospitalization, Ashley and I had traveled to Kentucky to see a doctor there that places gastric pacemakers.  The doctor felt like Ashley would benefit from having one but would place a temporary one with a scope before doing surgery to place a permanent one.  While this option may eventually be used, we are trying some less invasive techniques first.

There is discussion of Ashley having her gall bladder out and/or getting a permanent feeding tube in her stomach.  She is now on her 5th feeding tube since the 4th one placed during the hospital stay became lodged against her stomach wall, and she claims this one is her last.  The side effects of having a tube in her nose are becoming more than bothersome, and now that we have finally found a formula she can tolerate, the stomach tube may be possible.

Today, she is receiving a PICC line in her arm in order to get hydration therapy and have blood draws.  Her veins are so very difficult to find and cannot hold in an IV for any length of time.  She benefits so very much from the extra fluids but is not yet far enough out from the infection to receive another port.  The three days straight of fluids at a time should alleviate the excessive passing out spells.

She has a few more colleges she wants to apply to even though Baylor has been her top choice for a while.  Her senior year has not been what she has hoped for thus far, but we pray every day for the next day to be better and for answers to be revealed.  There seems to be something else going on in addition to the POTS so finding out what that is remains on our minds.

Thank you so much for continuing to pray for Ashley's healing and continued comfort.  We all need strength and peace to get through each day and choose to always be hopeful that her health will be improved sooner rather than later.