I realize that I stated previously that I would write about some of our Ronald McDonald House families in this next post. However, Ashley has experienced a big setback that needs to be brought to everyone's attention.
On Tuesday, Ashley was becoming even more nauseous than usual. When she awakened on Wednesday morning, the nausea was quite severe. In addition, her color was very pale, and she had a difficult time getting ready to go to the treatment center due to her condition. We arrived at the treatment center ready to do treatment at 10:00 am. However, the day would prove to dramatically change its path while we were there.
When we were at the treatment center, Ashley could only find relief from the nausea and now severe abdominal pain by curling up into a ball. She was not able to engage in the biofeedback sessions, and Dr. Kriprianou called me back to her office, so I could ask her my usual set of questions, while Ashley tried to take a break there in the room with us. The entire time I was talking to the doctor Ashley sat in the curled up ball position and could not participate in the conversation the doctor and I were having. The doctor finally suggested that Ashley try to listen to the relaxation CD that her treatment sessions conclude with each time. The doctor noted that her current condition was not related to POTS and suggested that I contact the GI doctor we had seen on Friday, Dr. Kendall Brown.
Ashley called me when she was attempting to listen to the relaxation CD, as I had relocated to the cozy waiting room during that time. When I arrived in the doctor's office where she was, she immediately said that I needed to take her to the hospital because the abdominal pain had become so unbearable. I knew immediately that her pain must be off the charts for her to ASK me to take her to the ER.
You have to keep in mind that we have come to the point where we avoid the ER if at all possible. We have had so many horrible experiences there because most doctors and nurses have absolutely no idea what POTS is. They dismiss Ashley's current acute symptom that brought us there in the first place, and tell us things like, "She has not experienced much pain in her life yet." Or, "She needs to eat more fiber." In fact, those were the responses we received in December and February when we had taken her to the ER for these same acute abdominal issues.
When Ashley and I were in the car finally, I called Dr. Brown's office to see if they could fit her in that day since we had just seen the doctor 5 days prior and since her pain was now debilitating. Amazingly, again, he had an opening at 2 pm that day. At the time, that seemed like an eternity to Ashley since she was in such a painful state, with no end in sight. I reassured her, continued to stay calm, and said that we would arrive at the doctor early in hopes that she could be seen earlier.
In the meantime, I thought it wise to drop by the Ronald McDonald House to pick up a few essentials, knowing we may very well be at the hospital for awhile. I felt certain that the doctor would send her to the ER or admit her to the hospital once her saw her pathetic condition. Sure enough, once we met with him, that is exactly what he indicated. He said that he still stood by his plan of action and by his possible diagnoses from our Friday appointment with him. And, added to that, "I think she needs to be in the hospital to figure this out."
Due to the lateness in the day, he suggested going to the ER, with the intention of Ashley being admitted for the night. By going through the ER, we would be able to have some of the tests done that very day instead of waiting until the next day. He said he would call ahead to tell them we were coming, and that his partner, Dr. Russo, would be on hospital duty this week. The fact that he called ahead allowed us to skip triage and go directly to an ER room. Furthermore, any tests to be run in the ER were put on STAT.
She first had a CT scan with contrast of her abdomen, followed by an ultrasound of her abdomen. In addition, blood and urine specimens were collected, and she was placed on IV fluids. Unfortunately, two ER nurses were not able to access her port for the IV fluids to be given or for the blood to be taken, which meant that she was once again forced to get an IV, after having her port area poked two times now AND after having the very difficult port surgery 7 weeks ago AND after getting blood drawn at Dr. Sanders office 10 days prior without using the port AND after not being able to use the port for the blood clotting test at the ER visit in February. She was NOT happy that this port was not benefitting her as it was intended to do.
That night, we were admitted to a huge room upstairs on the 6th floor of Medical City Children's Hospital, room 606D to be exact. We would spend the night and find out test results in the morning. I spent the night on the most comfortable couch turned double bed ever imaginable in a hospital room, and I even awoke without any back pain! Ashley slept well for the most part, and Dr. Russo arrived about 7:00 am for his morning rounds.
He indicated that the first two tests were inconclusive and that he needed to do an MRI of her abdomen. This meant she would be in a lot of pain because the MRI would last about 30 minutes, and she would have to have her arms above her head the whole time and have to have a large screen placed on top of her the whole time also. I stayed with her in the MRI room with my earplugs firmly in place and was proud of how well she did, despite her obvious discomfort as evidenced by the tears rolling down her cheeks prior to even entering the MRI machine.
I spent that night at the Ronald McDonald House, took a much needed shower, did a load of laundry, and gathered many items to bring back to the hospital on Friday morning. Ashley was stable and comfortable, and I was at peace leaving her for the night in the good hands of our favorite nurse, Marcella. She did shed some tears when I left, but I assured her that I would return by 7 am to catch Dr. Russo on his rounds and that I would come right back to the hospital in a heartbeat if she called me during the night. I was only 15 minutes away and would have everything packed and ready to go before I went to sleep.
Ashely slept well while I was gone, and when Dr. Russo came in at 7:45 am, he said that he would need to do an endoscopy since no test, blood draw, or urine specimen had told him yet what was causing the acute abdominal pain. This short procedure required the patient to be put under, which is always a concern for Ashley with a high heart rate and low blood pressure due to POTS. I immediately contacted the anesthesiologist, Dr. Furmahn, in San Antonio that had put her under for her port surgery (and her brain MRI two years ago) to find out what drugs he had used in January for her port surgery. He had commented that her blood pressure and heart rate were stable throughout that surgery, and I wanted to know what drugs he had used in order to have the same outcome with the anesthesiologist here.
Upon meeting Dr. King in the GI lab here, I immediately told him that Dr. Furmahn's office would be faxing Ashley's January anesthesia records to him and immediately gave him Dr. Furmahn's pager number. He was grateful to have this information once he learned that Ashley had POTS! While we were all waiting for Dr. Russo to arrive in the GI procedure room, Dr. Furmahn called Dr. King back and shared important information with him. At this point, I was completely reassured that Ashley was well cared for all the way around since Dr. King planned to follow the same drug protocol as Dr. Furmahn had in January. Besides, once Dr. King learned that we had four children, in four years, with the last two being twins, he seemed to have an increased level of compassion for Ashley and me. He said, "Man, I will be praying for y'all."
The endoscopy was quick, and Dr. Russo had me back in the procedure room looking at the computer photos in about 15 minutes! There was thickened tissue with white plaque and small erosions / irritation on parts of her esophagus and parts of her stomach. He took biopsies of the white spots and expected the results back on Tuesday. He said we did not need to remain in the hospital until then, however, and as soon as Ashley was eating solid foods again, she could be released. He was now thinking that she had developed a new food allergy, had reflux, or had developed yeast. She was placed on a clear liquid diet and would transition to solid foods. By this time, she had not had anything to eat or drink in 48 hours, with the exception of minimal amount of water when taking her medications.
I immediately wondered how in the world she would begin to eat solid foods when her stomach could not tolerate liquids. Even water irritated her stomach! She tried drinking apple juice during the day as well as Sprite. Both of these caused pain and could not be digested. She tried eating jello, 3 bites over 30 minutes. The jello caused even more pain. She was off fluids and was to be hydrating herself but could not find anything to hydrate herself with, much less any thing to eat!
As bedtime approached, I had her eat more jello, again 3 bites over 30 minutes time. I knew she would need something in her system to help digest her nighttime medications. All medication by mouth had been difficult to digest the last 2 days, even when she would take one pill at a time. When she finished the jello this time, her pain level increased dramatically. She was then only able to digest two and half pills before she was in the worst pain I have ever seen her in during her entire life. The nurse gave her Tylenol since it was time to do so and said to let her know if the pain increased.
Within five minutes, I was at the nurse's station saying she was in agony. She was screaming in the background and begging everyone for help. The head nurse went to get the morphine she was allowed to have, but had been avoiding at all costs due to side effects, and administered it through her port that a pediatric oncology nurse had thankfully accessed instantly the day before. Two other nurses came in the room with the head nurse and myself. Ashley was crying, screaming, curling up in a ball, passing out constantly, and trying to vomit all at the same time. That hour was an incredibly intense, scary, and draining hour to say the least. When the morphine had finally kicked in and taken her pain level down to a 9 from a 10 plus, she and I were absolutely, positively spent. I had remained calm and reassuring through it all but had done myself in completely as a result.
Needless to say, I stayed the night at the hospital after that! There was no way I was going to sleep at the Ronald McDonald House, and there was no way that Ashley was going to let me out her sight! The morphine allowed her to sleep some during the night, and I appreciated the quiet nurses during the night! We slept as well as could be expected after such a traumatic night. There is no doubt that I will never, ever forget that night as long as I live.
When meeting with Dr. Russo the next morning (Saturday), he was still perplexed as to what was causing this acute abdominal pain. He even asked me what my thoughts were on it all. I responded that Ashley knows her body very well now, that her pain threshold is pretty high, that she was in the most pain ever in her life the night before, and that she definitely has something going on that is hard to diagnose. He decided to repeat some blood and urine tests, run some new blood and urine tests, have a comprehensive abdomen x-ray done, and place Ashley back on Toradol to help her ease off the morphine. (After the endoscopy the day before, he had taken her off the Toradol in case it was causing the GI inflammation, but he felt the risk of that happening was low in comparison to the fact that she needed relief from this acute abdominal pain.)
Ashley slept a good part of the afternoon, and I was able to enjoy visiting with David's brother, Jeff, and his wife, Claudia, during that time. They live in the DFW area and were kind enough to visit us on their way to have dinner with their two daughters and one son-in-law. What a relief it was to see how well Claudia was doing after her own surgery just 10 days ago, and what a joy it was to see the smile on Ashley's face when I presented her with the stuffed animal version of Sadie that Aunt Claudia brought for her!
After sleeping about 4 hours at the Ronald McDonald House, I arrived back at the hospital this morning (Sunday) at 7:45 am. Ashley was awake when I arrived but immediately said that she was having chest pain now. I began to finalize my list of questions for Dr. Russo, and he arrived shortly thereafter. He was disappointed that Ashley had not been able to start the 24 hour urine test because that is the main test he needs to screen for porphyria, which is what he is thinking this is. He also needs the 24 hour urine test to do a full metal screening. He is leaning away from a diagnosis of Superior Mesenteric Artery (SMA) Syndrome based on all of her previous tests, which he carefully reviewed again this morning.
He mentioned that if Ashley could not eat "more than a popsicle" today that she would have to have a feeding tube placed in her nose in the morning. Ashley was surprised to hear that she would be awake when he did this! He also said that if he did not have the 24 hour urine test by noon tomorrow that he would have to use invasive means to acquire that. If she has porphyria, he can start her on medication via her port and would involve a hematologist in her care. Porphyria is a rare blood disorder that can cause many of her symptoms and is caused by a genetic enzyme defect. But, he has to have the actual diagnosis to proceed. In all of my many hours of research the last 10 days, I think she does indeed have acute porphyria.
So, here are the latest prayer requests. Pray that Ashley can tolerate clear liquids and begin to eat things like soy milkshakes today. Pray that she will provide a good 24 hour urine specimen. Pray that invasive measures can be avoided. Pray that she will maintain her weight. And, most of all, pray for QUICK ANSWERS. We want to go home to see the 4 Roper boys and the 2 Roper dogs. We want to be in San Antonio to finalize prom preparations for Saturday's festivities. Yet, we want to continue to glorify God through all of this turmoil, too.
Thank you from the bottom of my heart for the prayers, texts, calls, e-mails, messages, letters, meals, treats, childcare, dog care, and endless support so many of you have provided to our family during this current storm. There is absolutely NO WAY we could be surviving, much less glorifying God, without your help in so many areas along the way.
No comments:
Post a Comment