We were home with Ashley for about a month prior to making our fourth hospital stop in Texas since Spring Break. Our time there was filled with the end of school madness that always comes with four kids but was made more intense by Ashley's increased pain, fatigue, and malnourishment, coupled with the fact that she was very far behind in school and desperately wanted to finish on time in order to have somewhat of a summer.
Her pain increased due to the feeding tube formulas not being tolerated by her digestive system and especially by having the NG feeding tube replaced by the NJ feeding tube. (The NJ tube goes through her stomach and into her lower intestine, thus, bypassing her stomach.) She had weaned herself down to a low dose of the pain medicine that was necessary after the NG was pulled out of her stomach and the NJ was placed in below her stomach. On Thursday morning, June 12, however, she woke up with an extreme, unexplained abdominal pain and immediately needed a higher dosage of pain medicine.
Since she had begun the fourth formula the day prior, we surmised that the pain must be due to an adverse reaction to that formula. We stopped that formula and began to run Pedialyte through the NJ. By Sunday, though, the pain was increasing day by day, and David and I decided that I should drive her to Houston to the ER at Texas Children's Hospital. We arrived there at 7:00 pm and were promptly given a bed in an ER room since Ashley passed out in the triage room. After checking the placement of her NJ via an x-ray, starting her on fluids, and making her pain more tolerable, the attending ER doctor said that Ashley would be admitted overnight. We arrived in our room upstairs at 3:00 am.
The next morning began with a pediatric hospitalist resident doctor coming in to assess Ashley at 6:45 am. The resident doctor reported to her team led by the attending doctor, Dr. Han, and they all came by later that morning. They were interested in finding out what previous tests Ashley had received in San Antonio, and we expressed an interest in having certain specialists on the medical team, based on what doctors in San Antonio had recently recommended. This process seemed to move slowly the next couple of days, while Ashley's pain increased and lack of nutrition continued. David realized how helpful it would be to come to Houston very early on Thursday morning, so he dropped everything else, got our three boys squared away with neighbors and friends, and came to Houston to be with his girls.
He arrived early Thursday morning, and we were thrilled to see him! Before he arrived, our previous night had been a long one due to Ashley's pain and due to her port leaking and having to be deaccessed and then reaccessed. The neurology team examined Ashley later on Thursday morning and met with us with recommendations.
The attending neurologist, Dr. Wolf, said that Ashley was a candidate for receiving IVIG treatment, in order to give Ashley some new, healthy antibodies in her blood to overpower remaining old, unhealthy antibodies in her blood, to better fight infection. We also learned that Ashley would have some GI testing on Friday and GI motility testing on Monday. Overall, that day ended, leaving us all feeling more hopeful than we had felt in many, many months.
All that hope was erased the next day, however. Dr. Wolf had discussed Ashley's case with another neurologist here at TCH. That doctor said that he had followed the 4 patients on a long term basis that Dr. Wolf had given IVIG treatment to on an inpatient short term basis, as well as 9 other patients from the Mayo Clinic, and found that those 13 patients had not experienced much improvement in their quality of life. However, Dr. Wolf indicated that she was still willing to give the IVIG treatment to Ashley and even said that she would give the treatment to her daughter if she was in the same state as Ashley.
We also met with Dr. Chimpintazi, a pediatric GI doctor that specializes in motility issues. He indicated that Ashley was not in fact a candidate for the scheduled motility testing on Monday. He said this because the motility testing is basically a two day test that requires an uncomfortable endoscopy and colonoscopy on one day and then a painful six hour motility test the next day.
He was concerned that the pain would be so great during those two days that Ashley would not be able to survive without getting pain medicines that can skew the results of the motility testing. In addition, he said the fact that Ashley is malnourished may skew the motility test results. Finally, he mentioned that since we were considering IVIG treatment for Ashley's POTS, that we may put Ashley through unnecessary pain with the motility testing, if in fact the IVIG treatment worked for her. He said that he would not have his own daughter undergo the motility testing in such a situation.
So, despite the fact that Ashley had a painful repeat GI test on Friday that may have yielded some new information, we began the weekend feeling very defeated and even more discouraged. Ashley's pain continues to increase on a daily basis, and we still don't have answers as to what is causing her abdominal pain.
In the meantime, we have pushed for Ashley to have a couple of tests run for something called Mastocytosis. These tests have to be sent off site, out of state, so a week is a minimum time frame for results. We also are waiting on the hospital here to find out if the IVIG treatment will be covered by our insurance. The treatments cost any where from $20, 000 to $40, 000 per treatment (that is not a typo) and are usually done once a month, for perhaps several months, if positive results are seen after the first treatment. We must also find out if Ashley can continue to receive these treatments in San Antonio.
Obviously, your prayers are still needed. Pray for Ashley to be comfortable and pain free. Pray for the doctors here to keep searching for answers. Pray for David and me to be rested, strong, and discerning during this most stressful and completely draining time. Pray for our three boys, who are often living without their parents present and who are often living with distracted parents when we are present. Pray for God to be with all of us and for this never-ending storm to end, once and for all.
And, at the risk of sounding like a broken record, tightly hug your children and fully treasure each and every moment with them. Enjoy watching them compete in the sport they love, enjoy listening to them play their instrument of choice, enjoy watching them hop in a carload of friends to go out and have a night of fun, enjoy taking them to the vacation destination of their dreams, enjoy treating them to their favorite restaurant in honor of their birthday, enjoy traveling around the country to visit their preferred colleges, and enjoy the carefree life that comes with having healthy children. David and I would give anything, and I mean ANYTHING, to have those moments once again with Ashley....
