Today was a fairly uneventful day in room 606D at Medical City Children's Hospital. In fact, Ashley and I both commented that the day seemed to go by slowly for some reason. Maybe it is because we have settled in to our hospital routine, our hospital home. We know several of the nurses very well now and have our favorites - Rachael, Marcella, and Ashley! I know how to go down any elevator and know where I am and how to easily make it back to the room. I think, though, that the day went slowly mostly because we are still just waiting, waiting for answers, answers that may not still be available for a few more days.
Ashley finished her first TPN feeding and noticed a different type of stomach pain with it. This does not make sense to the doctor or the dietician, though, because with TPN feedings, the nutrition bypasses your stomach and filters through your bloodstream via a central line. She is currently on a 24 hour feed, so she received her next round this evening. She was happy to see that the large bag is clear and not yellow. While walking outside today, she felt like people probably thought the bag contents were something else! Her second feed has less vitamins but more fat, so it will be interesting to see how her body tolerates it.
Dr. Russo's main concern with the TPN feedings is what they could do to her liver. Therefore, her blood is drawn before 6 am each morning with results available before the next feed order is placed before 11 am. He indicated that TPN feedings are a temporary solution for that reason. That is why it is so important to have her continue to digest clear liquids, which is still difficult without a round of morphine beforehand. She ate 1/2 of a popsicle, drank about 16 oz. of lemonade, ate some diluted chicken broth, and drank water throughout the day. Amazingly, she has only lost 3 pounds despite not having any solid food for a week now.
Other goals for Ashley according to the doctor are that she begin to sit in a chair and eventually attempt walking. She sits up when we go on wheelchair walks obviously and sat up more in bed today. She still requires the help of her wheelchair when going to the bathroom due to being light-headed from POTS and due to having increased abdominal pain when she moves around.
The highlight of our day was a face time session with the 4 Roper boys and 2 Roper dogs. Josh was in rare form and had Ashley and I laughing a lot. Chris was wishing he could enjoy dessert with the others, but he gave up sweets for Lent. Ryan was on the quiet side but had plenty to say about the breakfast menu today. Apparently, David decided to use his new juicer to make random fruit and vegetable smoothie type things for the boys today. For boys who eat a large breakfast every morning, this did not cut it. Josh said he was so hungry in 3rd period he could not concentrate to do his work! Grace and Sadie were up to their usual tricks of looking for droppings from dinner under the table and around the kitchen area.
Ashley and I have talked a great deal about how this experience makes you appreciate the small things in life, things we all often take for granted. Fresh air. Sunshine. Taking a bath. Having clean hair. Being outside. Solid sleep. Eating. Drinking. Family. Friends. And so much more. I think we both thought of how important it is to slow down even more by taking the time to stop and smell the flowers because of what was going on today on the 6th floor.
Our wing houses a lot of pediatric cancer patients. There are some patients that have been there for a very long time as evidenced by how much their larger rooms are decorated. There are some patients who come for a couple of days for chemo and then go back home. All of the cancer patients have multiple signs on their doors about checking in with the nurses' station before entering the room. The patients have ranged in age from toddlers that are be pulled around in red wagons to teenagers that wander around on their own. All of them have their IV poles with several chemo drugs attached in tow. Many of them are without hair. The youngest ones are usually sad or irritable. The parents and grandparents looking after them often look exhausted.
Today, however, there were parents and many other children, teenagers, and adults openly weeping and hugging each other in the hallway around the corner from Ashley's room. I noticed them right away when I exited the elevator in the afternoon, and I immediately knew why they were so upset. My heart instantly ached, and I felt my stomach twist into a tight knot. I immediately began to cry as I was out of their sight.
I saw how much emotion was on their faces and in their teary eyes. I noticed how they were not trying to hide their emotions. I wondered how in the world does a parent survive such a tragic event in life of watching a young, innocent child slip away to our Father's loving arms because of cancer. I wondered if the food that others had brought to be shared among those grieving would still be there tomorrow. Would this suffering child continue to suffer?
As I close this entry tonight, I ask that you pray for this family of a 9 year old boy. I ask that you pray they will feel God's peace and comfort during this time. I ask that you pray for a cure for childhood cancer and all the other terminal illnesses that have no cure. I ask that your prayers lead you to do something for someone that is hurting so deeply that he/she does not know how he/she can face the next day. And, while I ask that you still pray for Ashley to be able to eat without feeling stomach pain and that you pray the doctors will aid us in finding answers sooner rather than later, I can't help but think this family needs your prayers even more.
This poor family has lost their son and will not be able to enjoy the small things with him here on Earth any longer. For those of you reading this, remember that you are fortunate enough to still enjoy the small things in life with those you love. The family of the 9 year old boy, however, must now wait to enjoy those moments in Heaven. And, to them I have no doubt that feels like an eternity....
Tuesday, March 25, 2014
Monday, March 24, 2014
destination dallas #6
I arrived at the hospital before 6 am since Dr. Russo said he would be here early today. Ashley had not slept well because her stomach hurt so frequently and so intensely from hunger. She mentioned that she had come close to calling me several times during the night to come back to the hospital. As soon as the nurse finished helping her back in bed from a restroom visit, she fortunately fell back to sleep.
Dr. Russo finally came in the room after 8:00 am. I was honestly not looking forward to seeing him. His arrival would mean the beginning of what could possibly be a very long and truly hard day for me and especially for Ashley. Since she had still not been able to eat more than 1/2 of a popsicle at a time over the last 24 hours, I was certain the NG tube (feeding tube through one of her nostrils) placement was coming.
Ashley and I first visited with him briefly in the room while the new day nurse, Kelsey, administered Ashley's morning medications. Ashley must now have the morphine prior to eating 1/2 of a popsicle and then having her morning and bedtime medications. If she does not have the morphine, then eating and taking the pain medications makes her abdominal pain skyrocket to an unbearable level. She can manage and push through the pain as long as she can keep it under 9.5 (out of a 10) level. We have even discontinued her vitamins and supplements since she has been on IV fluids and since she has so much pain with every pill that goes down.
I then asked Dr. Russo to visit with me outside the room, so I could find out more about the procedure. I had in my typical fashion, of course, researched the procedure more in the past 24 hours and wanted to make sure that some particulars were definitely included in the procedure. For instance, I wanted Ashley to have ice water at hand to drink prior to the tube being placed and while the tube was being put down. At some point in the conversation, I became emotional and starting crying. I somehow, by the grace of God, had avoided crying these past 3 weeks, until yesterday. That is when the lack of sleep began to finally catch up with me.
I first cried when I talked to Ryan on the phone in the afternoon on Sunday. He just sounded so terribly sad, and I just hated hearing that in his voice. (Josh had sounded sad when I had talked to him one day last week, but I was more rested and therefore not at an emotional breaking point then.) You realize that when you can't be with those you love that you miss the little things you do together. For instance, I have usually been the one to take Ryan to his baseball tournament games on the weekends over the years since David always works on Sundays and often works on Saturdays as well. Ryan and I always stop for ranch flavored sunflower seeds and a gatorade prior to his day of games. The ritual is just our routine, and we both desire routine.
When I began to cry while talking to Dr. Russo, however, it was due to the fact that I knew how much Ashley wanted to get home to see her dad, her brothers, her dogs, her friends, AND to attend prom on Saturday. I wanted him to know how much she was missing what home entailed and how much I wanted to get her home for the weekend, even if it meant having to come back to Dallas next week. At some point following my tears, we revisited the NG tube particulars, and I was asking if her port would play a part in any of that process. He asked if her port was unable to be accessed, and I said no.
You see, when Ashley first met Dr. Russo on Thursday, after she was admitted on Wednesday afternoon, two ER nurses had not been able to access the port. Yet, after his hospital rounds on Thursday, one of the pediatric oncology nurses accessed the port right away. Upon noticing his reaction to this important piece of information, I then asked if we could try feedings through her port instead. To my amazement, he said that he could try TPN (Total Parenteral Nutrition) feedings through her port, even though it is not an ideal option. As with most medical situations, there are risks to TPN feedings and extra care will have to still be taken to keep her port line very clean.
Since Ashley had also been able to finally start the successful 24 hour urine process, Dr. Russo was willing to let her continue with that and not have to insert a catheter to gather the much needed specimen. I thought he might give up the catheter idea when I initially arrived at the hospital this morning and found the nurse helping Ashley with her bathroom visit. However, I never in a million years expected him to modify his plan for feeding her. I knew she would be so relieved when I walked back in room 606D and told her the amazing news. Sure enough, she was....
The rest of the day involved meeting with the dietician, Lisa, and learning more about how the TPN feedings work exactly and how she determines precisely how much of what (fats, etc.) to put in them. Ashley and I were comforted by the fact that she has had two other POTS patients with difficult feeding issues. She was very surprised that Ashley could not even digest water without having stomach pain and that Ashley was also wheat and dairy free, making her transition from TPN to liquid foods to solid foods even more challenging. Lisa's intentions were to instruct her intern to research Ashley's possible diagnoses, especially the porphyria.
We also made time to take Ashley down to the on site hair salon to have her hair washed. We had applied the waterless shampoo a few days ago, but that was a very temporary fix. The bathtub in the hospital room is too low for her to get in and out of without a lot of pain. The girl feels like a new woman with clean, soft, and fresh hair now! Getting out of the room and going somewhere else, anywhere else, is always good for her! And, I am quite a site maneuvering her wheelchair with one hand and her IV pole with another! I think I have found the secret to having males of all ages hold doors and elevators open for me now....
Obviously, your prayers are working as evidenced by the fact that Ashley was able to be placed on TPN feedings instead of NG feedings AND by the fact that she avoided the catheter all together! Here are the new requests, however. Pray that she can begin to tolerate the TPN feedings well as evidenced by her soon to be daily blood draws. Pray that she can add other clear liquids to her diet. Pray that test results come back as soon as possible. Pray that we can depart for San Antonio and prom weekend no later that Friday.
Many of you have asked how you can help our family. Feeding the 4 hungry Roper boy (especially ravenous Chris) is always helpful. One less thing that David and the boys have to worry about, and one more thing that I know is taken care of in San Antonio. Debby Villers is organizing meals for them, I believe. Decorating the hospital room has become a favorite pastime for us, so mailing cards or little kid pictures or just anything to us, would be great! You can send them to: Ashley Roper, Ronald McDonald House, 4707 Bengal Street, Room 214, Dallas, TX 75235-8007. They will forward them to us in San Antonio should we leave town. Again, thank you again for the love, support, concern, and most of all, PRAYERS!
Dr. Russo finally came in the room after 8:00 am. I was honestly not looking forward to seeing him. His arrival would mean the beginning of what could possibly be a very long and truly hard day for me and especially for Ashley. Since she had still not been able to eat more than 1/2 of a popsicle at a time over the last 24 hours, I was certain the NG tube (feeding tube through one of her nostrils) placement was coming.
Ashley and I first visited with him briefly in the room while the new day nurse, Kelsey, administered Ashley's morning medications. Ashley must now have the morphine prior to eating 1/2 of a popsicle and then having her morning and bedtime medications. If she does not have the morphine, then eating and taking the pain medications makes her abdominal pain skyrocket to an unbearable level. She can manage and push through the pain as long as she can keep it under 9.5 (out of a 10) level. We have even discontinued her vitamins and supplements since she has been on IV fluids and since she has so much pain with every pill that goes down.
I then asked Dr. Russo to visit with me outside the room, so I could find out more about the procedure. I had in my typical fashion, of course, researched the procedure more in the past 24 hours and wanted to make sure that some particulars were definitely included in the procedure. For instance, I wanted Ashley to have ice water at hand to drink prior to the tube being placed and while the tube was being put down. At some point in the conversation, I became emotional and starting crying. I somehow, by the grace of God, had avoided crying these past 3 weeks, until yesterday. That is when the lack of sleep began to finally catch up with me.
I first cried when I talked to Ryan on the phone in the afternoon on Sunday. He just sounded so terribly sad, and I just hated hearing that in his voice. (Josh had sounded sad when I had talked to him one day last week, but I was more rested and therefore not at an emotional breaking point then.) You realize that when you can't be with those you love that you miss the little things you do together. For instance, I have usually been the one to take Ryan to his baseball tournament games on the weekends over the years since David always works on Sundays and often works on Saturdays as well. Ryan and I always stop for ranch flavored sunflower seeds and a gatorade prior to his day of games. The ritual is just our routine, and we both desire routine.
When I began to cry while talking to Dr. Russo, however, it was due to the fact that I knew how much Ashley wanted to get home to see her dad, her brothers, her dogs, her friends, AND to attend prom on Saturday. I wanted him to know how much she was missing what home entailed and how much I wanted to get her home for the weekend, even if it meant having to come back to Dallas next week. At some point following my tears, we revisited the NG tube particulars, and I was asking if her port would play a part in any of that process. He asked if her port was unable to be accessed, and I said no.
You see, when Ashley first met Dr. Russo on Thursday, after she was admitted on Wednesday afternoon, two ER nurses had not been able to access the port. Yet, after his hospital rounds on Thursday, one of the pediatric oncology nurses accessed the port right away. Upon noticing his reaction to this important piece of information, I then asked if we could try feedings through her port instead. To my amazement, he said that he could try TPN (Total Parenteral Nutrition) feedings through her port, even though it is not an ideal option. As with most medical situations, there are risks to TPN feedings and extra care will have to still be taken to keep her port line very clean.
Since Ashley had also been able to finally start the successful 24 hour urine process, Dr. Russo was willing to let her continue with that and not have to insert a catheter to gather the much needed specimen. I thought he might give up the catheter idea when I initially arrived at the hospital this morning and found the nurse helping Ashley with her bathroom visit. However, I never in a million years expected him to modify his plan for feeding her. I knew she would be so relieved when I walked back in room 606D and told her the amazing news. Sure enough, she was....
The rest of the day involved meeting with the dietician, Lisa, and learning more about how the TPN feedings work exactly and how she determines precisely how much of what (fats, etc.) to put in them. Ashley and I were comforted by the fact that she has had two other POTS patients with difficult feeding issues. She was very surprised that Ashley could not even digest water without having stomach pain and that Ashley was also wheat and dairy free, making her transition from TPN to liquid foods to solid foods even more challenging. Lisa's intentions were to instruct her intern to research Ashley's possible diagnoses, especially the porphyria.
We also made time to take Ashley down to the on site hair salon to have her hair washed. We had applied the waterless shampoo a few days ago, but that was a very temporary fix. The bathtub in the hospital room is too low for her to get in and out of without a lot of pain. The girl feels like a new woman with clean, soft, and fresh hair now! Getting out of the room and going somewhere else, anywhere else, is always good for her! And, I am quite a site maneuvering her wheelchair with one hand and her IV pole with another! I think I have found the secret to having males of all ages hold doors and elevators open for me now....
Obviously, your prayers are working as evidenced by the fact that Ashley was able to be placed on TPN feedings instead of NG feedings AND by the fact that she avoided the catheter all together! Here are the new requests, however. Pray that she can begin to tolerate the TPN feedings well as evidenced by her soon to be daily blood draws. Pray that she can add other clear liquids to her diet. Pray that test results come back as soon as possible. Pray that we can depart for San Antonio and prom weekend no later that Friday.
Many of you have asked how you can help our family. Feeding the 4 hungry Roper boy (especially ravenous Chris) is always helpful. One less thing that David and the boys have to worry about, and one more thing that I know is taken care of in San Antonio. Debby Villers is organizing meals for them, I believe. Decorating the hospital room has become a favorite pastime for us, so mailing cards or little kid pictures or just anything to us, would be great! You can send them to: Ashley Roper, Ronald McDonald House, 4707 Bengal Street, Room 214, Dallas, TX 75235-8007. They will forward them to us in San Antonio should we leave town. Again, thank you again for the love, support, concern, and most of all, PRAYERS!
Sunday, March 23, 2014
destination dallas #5
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.
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.
Wednesday, March 19, 2014
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....
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....
Saturday, March 15, 2014
destination dallas #3
Our first weekend in Dallas was very fun because David and the boys came up from San Antonio to visit. They stayed at the La Quinta in Mansfield on Friday night so that they could all see David's parents Friday night and Saturday morning before driving into Dallas to see us. Grandma and Papa are both 89 and live in a beautiful assisted living home in a two bedroom, two bath apartment. Josh had seen them in December when he came up with David for a weekend visit. Chris and Ryan, however, had not seen them in over a year. They are unable to travel now, and traveling is hard on Ashley, too. So, the best option has been for David to come up for visits with one of the kids.
On Saturday at noon, Ashley and I met David and the boys near SMU campus, and Chris and Josh hopped in the car with Ashley and me, while David took Ryan up to north Dallas for the first of his two baseball games. We headed right back to the Ronald McDonald House because Chris and Josh wanted to eat the usual delicious lunch here and then have a tour. Ashley and I were so happy to see them after just being apart for 3 days! They all add so much laughter to our lives, especially Josh!
After allowing Ashley some time to nap, the four of us headed to Allen to watch Ryan's second baseball game. The weather was absolutely miserable, so we parked behind left field and sat in the car, turning on the heat and seat warmers frequently! With the windchill, it felt like 32 degrees, and it was rainy, too. Ryan said he used 16 hand warmers during the game, and at some point, David joined us in the car, too! Definitely not spring baseball weather....
The boys stayed at the baseball team's hotel choice in Allen that night, so Ashley was happy to watch the Duke and North Carolina basketball game there while we feasted on Cane's chicken for dinner. Ashley and I drove back to the RMHD for the night with plans to see the boys the next day. Ryan would have a game at 10:00 am, and the team was expected to do well since they were the number one seed after run ruling both teams the day before.
As baseball fans are well aware, though, anything can happen in baseball, and his team lost the first game on Sunday by a score of 3 to 1. So, David and the boys checked out of the hotel and made it to RMHD just in time for noon dessert - yum yum cake! We enjoyed a nice family day outside on the basketball court and then went to browse some shops in Highland Park to soak up the sunshine. David and the twins spent most of their time in the Apple store getting David's phone repaired, but the other three of us enjoyed the shops, people watching, and especially dog watching!
As we said our goodbyes that afternoon, I realized it would be almost 2 weeks before I saw the twins again and over two weeks before I saw David and the Chris again. Ashley and I are due to return home on Friday, March 21, but by the time we arrive home, David and Chris will have already departed for Confirmation Retreat for the weekend. Ashley, of course, hugged her dad extra tight, and I got a good chuckle from Chris' parting words. He said, "Hurry home, mom. I am not sure how we will survive school without you." To which Ryan replied, "Dad just does not know the routine!" To which I replied, "Well, you will just have to teach him then."
So, now it has been a week since we have seen them. The girls miss the boys, and the boys miss the girls. Ashley and I miss them even more when we call to talk to them. One day we called, and Josh answered the phone, while he was inside on a break from working in the yard. I noticed he sounded congested, and he described his allergy symptoms. Ashley and I then spent 20 minutes on the phone with him helping him find some sudafed in the house. You see, he did not want to ask his dad or brothers where it was because then they would want him to come back outside for more yard work! :)
At times like this, you realize the importance of family and how much they add to your life, especially during the stormy times, such as a medical crisis. I miss their humor, their hugs, their laughter, and just their presence. I guess it really is true that absence does make the heart grow
fonder....
On Saturday at noon, Ashley and I met David and the boys near SMU campus, and Chris and Josh hopped in the car with Ashley and me, while David took Ryan up to north Dallas for the first of his two baseball games. We headed right back to the Ronald McDonald House because Chris and Josh wanted to eat the usual delicious lunch here and then have a tour. Ashley and I were so happy to see them after just being apart for 3 days! They all add so much laughter to our lives, especially Josh!
After allowing Ashley some time to nap, the four of us headed to Allen to watch Ryan's second baseball game. The weather was absolutely miserable, so we parked behind left field and sat in the car, turning on the heat and seat warmers frequently! With the windchill, it felt like 32 degrees, and it was rainy, too. Ryan said he used 16 hand warmers during the game, and at some point, David joined us in the car, too! Definitely not spring baseball weather....
The boys stayed at the baseball team's hotel choice in Allen that night, so Ashley was happy to watch the Duke and North Carolina basketball game there while we feasted on Cane's chicken for dinner. Ashley and I drove back to the RMHD for the night with plans to see the boys the next day. Ryan would have a game at 10:00 am, and the team was expected to do well since they were the number one seed after run ruling both teams the day before.
As baseball fans are well aware, though, anything can happen in baseball, and his team lost the first game on Sunday by a score of 3 to 1. So, David and the boys checked out of the hotel and made it to RMHD just in time for noon dessert - yum yum cake! We enjoyed a nice family day outside on the basketball court and then went to browse some shops in Highland Park to soak up the sunshine. David and the twins spent most of their time in the Apple store getting David's phone repaired, but the other three of us enjoyed the shops, people watching, and especially dog watching!
As we said our goodbyes that afternoon, I realized it would be almost 2 weeks before I saw the twins again and over two weeks before I saw David and the Chris again. Ashley and I are due to return home on Friday, March 21, but by the time we arrive home, David and Chris will have already departed for Confirmation Retreat for the weekend. Ashley, of course, hugged her dad extra tight, and I got a good chuckle from Chris' parting words. He said, "Hurry home, mom. I am not sure how we will survive school without you." To which Ryan replied, "Dad just does not know the routine!" To which I replied, "Well, you will just have to teach him then."
So, now it has been a week since we have seen them. The girls miss the boys, and the boys miss the girls. Ashley and I miss them even more when we call to talk to them. One day we called, and Josh answered the phone, while he was inside on a break from working in the yard. I noticed he sounded congested, and he described his allergy symptoms. Ashley and I then spent 20 minutes on the phone with him helping him find some sudafed in the house. You see, he did not want to ask his dad or brothers where it was because then they would want him to come back outside for more yard work! :)
At times like this, you realize the importance of family and how much they add to your life, especially during the stormy times, such as a medical crisis. I miss their humor, their hugs, their laughter, and just their presence. I guess it really is true that absence does make the heart grow
fonder....
Thursday, March 13, 2014
destination dallas #2
When we first met with Dr. Kriprianou on March 6, she asked Ashley about all of her symptoms and then requested that Ashley rate each symptom on a scale of 1 to 10. Each day following treatment, Ashley will be expected to rate those symptoms again so that improvement can be noted. The doctor also went into detail about the nervous system and its two divisions - the parasympathetic and the sympathetic.
Basically, the body uses the parasympathetic mode to rest and digest and turn off the adrenaline the body has, whereas the body uses the sympathetic mode to fight or flight when the body is stressed. For example, when in the sympathetic mode, the body's heart accelerates and its blood vessels constrict, thus causing tachycardia or a fast heart rate. By contrast, when the parasympathetic division is "winning" in the body, the body's heart is inhibited and its blood vessels dilate, thus causing a normal heart rate. As you can guess, Ashley's body is mostly in the sympathetic mode of fight or flight with her POTS. The goal of the treatment program here is to have her body learn to be in the parasympathetic mode, but accomplishing this goal will be like a tug of war within her body while she learns to retrain her autonomic nervous system.
The doctor also provided many recommendations for Ashley including "no stress". She wanted Ashley to avoid working on homework, but upon seeing Ashley's reaction to those words, the doctor asked her if it would cause more stress for Ashley if her homework was tabled for these two weeks. Ashley responded that not doing any homework would make her more stressed because she would fall behind, so the doctor then said Ashley could work on 30 minutes of homework in the morning and 30 minutes of homework in the evening.
We enjoyed meeting Dr. Kriprianou and her helpful and welcoming staff that day but were definitely
in zombie like states due to the crazy night at the ER, just a few hours prior to the initial appointment.
After leaving her office and transferring our two week's worth of luggage from the hotel to the Ronald McDonald House, we were totally ready to go to bed for the night at 6 pm! By then, I had been awake for a solid 36 hours, other than the one hour I slept at the hotel, before Ashley awakened me due to her allergic reaction to the Lyrica medication. Prior to crashing for the night at 8 pm, however, we enjoyed our first delicious, hot meal at the Ronald McDonald House. The meatloaf, mashed potatoes, green beans, salad, rolls, dessert, and iced tea could not have come at a more welcome time! When I woke up the next morning, I felt like a completely person and was ready to conquer the world!
Our second appointment on Friday was with Andrea, the psychologist at the treatment center. She introduced Ashley to some of the biofeedback equipment she would be using starting on Monday and spent some time getting to know Ashley. For this appointment, I waited in the waiting room and enjoyed reading a binder full of thank you letters from Dr. Kriprianou's former patients. There were
letters from patients that had conquered debilitating migraines, patients that had overcome severe
anxiety, patients that had lost a significant amount of weight, patients that had beat years of chronic pain, and patients that had greatly improved their POTS symptoms. The letters all shared two themes. One, the patients were all grateful for the doctor and her staff giving them their lives back. Two, the patients were all grateful for the kind, compassionate, and knowledgable doctor and her wonderful staff.
And that, dear loved ones, is exactly what David and I are looking for on behalf of our most precious daughter, Ashley. For her to get her life back. For her to be free of chronic pain. For her to be able to eat a large meal. For her to be a teenager. For her to be able to go back to school. For her to be able to go away to college. For her to be able to learn how to drive. For her to avoid multiple fainting episodes a day. For her to go out to a Churchill football game without using a wheelchair. For her to be active again doing whatever sport she loves. For her to attend church again. For her to be able to join her family at the dinner table. For her to be able to go out more often with her friends. For her
to be able to go to her brothers' games and concerts. For her to not just exist. For her to truly live
again.
So, with the help of the kind, compassionate, and knowledgable Dr. Kriprianou, and her equally
impressive staff, and with the help of your continued prayers of healing, comfort, and love, we are hopeful that we have found just that for our very special daughter. To have life once again.....
Basically, the body uses the parasympathetic mode to rest and digest and turn off the adrenaline the body has, whereas the body uses the sympathetic mode to fight or flight when the body is stressed. For example, when in the sympathetic mode, the body's heart accelerates and its blood vessels constrict, thus causing tachycardia or a fast heart rate. By contrast, when the parasympathetic division is "winning" in the body, the body's heart is inhibited and its blood vessels dilate, thus causing a normal heart rate. As you can guess, Ashley's body is mostly in the sympathetic mode of fight or flight with her POTS. The goal of the treatment program here is to have her body learn to be in the parasympathetic mode, but accomplishing this goal will be like a tug of war within her body while she learns to retrain her autonomic nervous system.
The doctor also provided many recommendations for Ashley including "no stress". She wanted Ashley to avoid working on homework, but upon seeing Ashley's reaction to those words, the doctor asked her if it would cause more stress for Ashley if her homework was tabled for these two weeks. Ashley responded that not doing any homework would make her more stressed because she would fall behind, so the doctor then said Ashley could work on 30 minutes of homework in the morning and 30 minutes of homework in the evening.
We enjoyed meeting Dr. Kriprianou and her helpful and welcoming staff that day but were definitely
in zombie like states due to the crazy night at the ER, just a few hours prior to the initial appointment.
After leaving her office and transferring our two week's worth of luggage from the hotel to the Ronald McDonald House, we were totally ready to go to bed for the night at 6 pm! By then, I had been awake for a solid 36 hours, other than the one hour I slept at the hotel, before Ashley awakened me due to her allergic reaction to the Lyrica medication. Prior to crashing for the night at 8 pm, however, we enjoyed our first delicious, hot meal at the Ronald McDonald House. The meatloaf, mashed potatoes, green beans, salad, rolls, dessert, and iced tea could not have come at a more welcome time! When I woke up the next morning, I felt like a completely person and was ready to conquer the world!
Our second appointment on Friday was with Andrea, the psychologist at the treatment center. She introduced Ashley to some of the biofeedback equipment she would be using starting on Monday and spent some time getting to know Ashley. For this appointment, I waited in the waiting room and enjoyed reading a binder full of thank you letters from Dr. Kriprianou's former patients. There were
letters from patients that had conquered debilitating migraines, patients that had overcome severe
anxiety, patients that had lost a significant amount of weight, patients that had beat years of chronic pain, and patients that had greatly improved their POTS symptoms. The letters all shared two themes. One, the patients were all grateful for the doctor and her staff giving them their lives back. Two, the patients were all grateful for the kind, compassionate, and knowledgable doctor and her wonderful staff.
And that, dear loved ones, is exactly what David and I are looking for on behalf of our most precious daughter, Ashley. For her to get her life back. For her to be free of chronic pain. For her to be able to eat a large meal. For her to be a teenager. For her to be able to go back to school. For her to be able to go away to college. For her to be able to learn how to drive. For her to avoid multiple fainting episodes a day. For her to go out to a Churchill football game without using a wheelchair. For her to be active again doing whatever sport she loves. For her to attend church again. For her to be able to join her family at the dinner table. For her to be able to go out more often with her friends. For her
to be able to go to her brothers' games and concerts. For her to not just exist. For her to truly live
again.
So, with the help of the kind, compassionate, and knowledgable Dr. Kriprianou, and her equally
impressive staff, and with the help of your continued prayers of healing, comfort, and love, we are hopeful that we have found just that for our very special daughter. To have life once again.....
Tuesday, March 11, 2014
destination dallas
You may find that this blog post sounds differently than ones written previously. You see, I am writing Ashley's blog entries while we are in Dallas for two weeks attending the POTS Treatment Center. When we met with the doctor for the first time on Thursday, she asked that I be the one to update others on Ashley's progress. She also advised Ashley to only communicate with a few friends. She wants her to be as relaxed as possible while having treatment, in order for her to be as engaged as possible, so that the treatment can work most effectively. Although Ashley was not at all thrilled with these requests, I am proud to say that she has been following doctor's orders well.
We left San Antonio on Wednesday, March 5 around 4:00 pm. We stopped in San Marcos, so Ashley could see her college friends at Texas State - Hayden, Austin, and Colton. They enjoyed dinner at Chipotle near campus while I ventured to the outlet malls and purchased a much needed new purse, wallet, and cosmetic bag. From there, we continued north on I - 35, stopping on the North side of Waco for gas. There was then a little construction traffic, and we found ourselves arriving in Dallas at 11:30 pm.
Even though there was a room available at the most impressive Ronald McDonald House that night, we arrived knowing that we would need to stay that night at the Holiday Inn instead due to the late hour we arrived. After bringing most of our luggage up to the fourth floor room, we collapsed into bed. By that point, I had been awake for 32 hours straight.
As we were turning out the lights, Ashley mentioned that she had been bit by some bugs and that the bites were bothering her. After a few minutes, she mentioned that the bites were keeping her from falling asleep. I gave her a small dose of melatonin to help her drop off to sleep before dropping off myself. After about an hour, however, Ashley woke me up because she was itching so badly all over
her body she was unable to sleep. I was in a very deep sleep by then, and waking up to comprehend
all that she was experiencing was difficult. After seeing the extent of the rash as well as some swelling on her body, I decided to call David. Of course, he was in a deep sleep also, but between our two sleepy brains, we agreed I needed to call Ashley's POTS doctor in San Antonio.
He returned my call immediately and suggested I give Ashley a teaspoon of Benadryl. We are always so hesitant to give her Benadryl because it makes her sleepy for about 5 days. I did not want her to be sleepy for the beginning of treatment but knew I had to give it to her because of how fast the rash was spreading up her body. Dr. Patel said that if the rash began to go up to her to her eyes, face, and neck that I needed to take her to the ER.
As luck would have it, we did not have any Benadryl on hand, despite packing the kitchen sink! So, I loaded Ashley and her wheelchair back in to the car and headed out to a 24 hour pharmacy. David
was on speaker phone in the car directing us through the dark streets of beautiful Highland Park while Ashley was itching like crazy next to me, and I ran numerous red lights! The plan was to go the drive thru lane and ask for Benadryl so that I would not have to take time getting Ashley out of the car and into her wheelchair to get into the pharmacy.
Of course, the drive thru was closed at that hour, and I ended up leaving Ashley on speaker phone with David while I raced in to find the Benadryl. I opened it at the register and left my credit card with the cashier before racing out to give the medicine to Ashley. The observant clerk even said, " So you have an emergency?" Yet, when I returned to retrieve my credit card, the same clerk asked me if I had a CVS rewards card to use. Really?
As we drove back to the hotel, which was only a few blocks from the Dallas Children's Hospital, Ashley's rash was not responding at all to the Benadryl. I went to the ER entrance, only to find out that I had to park down a hill, take out her wheelchair, and push her up the hill and then a ramp to get
into the ER. What happened to the concept of pulling into the ER driveway and having a nurse with a gurney come out to greet you?
After getting checked into the ER, we came in contact with a nurse, a resident, and a pharmacist. Of course, none of them had any idea what POTS is, which is typical of every ER trip! After taking Atarax by mouth so that her port would not have to be accessed, the ER kept an eye on her to make sure she did not have an allergic reaction to the medication that was treating her allergic reaction. A supervising doctor came in the room at one point, and she had actually heard of POTS because a physician friend of hers came down with it after giving birth to her second child.
We were discharged from the hospital at 7:00 am and drove back to our hotel. I promptly put Ashley back to bed, so she could get some sleep before her initial meeting with Dr. Kriprianou at the POTS Treatment Center. I, however, was off to locate a 24 hour pharmacy that was closer than the one we had driven to in the middle of the night to buy Benadryl. Thanks to Siri, I found one close by but would have to wait over an hour for the Atarax to be filled. The only way I was going to stay slightly awake at this point was to go to Starbucks, which just happened to be a block from the pharmacy. I ultimatley decided to stay up that morning and thoroughly dissect Ashley's mounds of medical records in order to be even more prepared to meet with the doctor that afternoon.
The Ronald McDonald House called with an available room again for that night, so after taking Ashley to the doctor for a couple of hours that afternoon and returning to the Holiday Inn for a complimentary very late check out, we drove a half mile to the Ronald McDonald House, our home for the next two weeks.
The facility is only 4 years old and truly amazing. There are 60 rooms, each with 2 queen beds and a private bath. There are family rooms with tv's, DVD players, and computers on each of the four wings. There is a craft room, a play room, a game room, a teen room, a study room, a library with movies and books for all ages as well as a computer with a printer, a chapel, a large great room, an outdoor playground, a basketball court, a large dining room, a huge commercial kitchen, two family
kitchens, four laundry rooms (free of charge with detergent provided), two elevators, and 6 apartments in the transplant wing where patients and their families can live following a transplant or during chemotherapy.
The house offers 3 home cooked meals a day and has a family activity every night after dinner. Various volunteer groups sign up online to serve the meals 365 days a year. They are responsible for buying the groceries, preparing the meal ahead of time, serving the meal, and cleaning up the kitchen afterwards. Volunteers will even deliver food to patients and residents living in the transplant wing so that those people are not exposed to others when coming to meals.
The Ronald McDonald House is my new charity of choice since Ashley and I have benefitted from their services while at the Mayo Clinic for 11 days and now at this house for over 2 weeks. Their philosophy is that sick children heal more quickly when they are with their families and when the families can interact with other families also experiencing a medical crisis. They realize how difficult a medical crisis is on the entire family and believe that families should not have to worry about a place to stay and their next meal to eat so that they can better focus on their child healing and on their family being together for the ill child. We are so blessed to be here, and we are so grateful to have a
quiet and comfortable room while Ashley receives treatment for these two weeks.
In my next post, I will talk about our first meeting with the doctor as well as our second day at the
treatment center. In the meantime, pray that Ashley is engaged and "healthy" during the treatment process. Pray that I am attentive to her needs and that I get the rest I need to do so. Pray for David and the boys back home in San Antonio to stay afloat with work, school, homework, activities, and care of our family dog Grace and Ashley's beloved dog Sadie. We miss them so much already and wish we did not have to be separated.
Until next time.... Angela on behalf of Ashley
We left San Antonio on Wednesday, March 5 around 4:00 pm. We stopped in San Marcos, so Ashley could see her college friends at Texas State - Hayden, Austin, and Colton. They enjoyed dinner at Chipotle near campus while I ventured to the outlet malls and purchased a much needed new purse, wallet, and cosmetic bag. From there, we continued north on I - 35, stopping on the North side of Waco for gas. There was then a little construction traffic, and we found ourselves arriving in Dallas at 11:30 pm.
Even though there was a room available at the most impressive Ronald McDonald House that night, we arrived knowing that we would need to stay that night at the Holiday Inn instead due to the late hour we arrived. After bringing most of our luggage up to the fourth floor room, we collapsed into bed. By that point, I had been awake for 32 hours straight.
As we were turning out the lights, Ashley mentioned that she had been bit by some bugs and that the bites were bothering her. After a few minutes, she mentioned that the bites were keeping her from falling asleep. I gave her a small dose of melatonin to help her drop off to sleep before dropping off myself. After about an hour, however, Ashley woke me up because she was itching so badly all over
her body she was unable to sleep. I was in a very deep sleep by then, and waking up to comprehend
all that she was experiencing was difficult. After seeing the extent of the rash as well as some swelling on her body, I decided to call David. Of course, he was in a deep sleep also, but between our two sleepy brains, we agreed I needed to call Ashley's POTS doctor in San Antonio.
He returned my call immediately and suggested I give Ashley a teaspoon of Benadryl. We are always so hesitant to give her Benadryl because it makes her sleepy for about 5 days. I did not want her to be sleepy for the beginning of treatment but knew I had to give it to her because of how fast the rash was spreading up her body. Dr. Patel said that if the rash began to go up to her to her eyes, face, and neck that I needed to take her to the ER.
As luck would have it, we did not have any Benadryl on hand, despite packing the kitchen sink! So, I loaded Ashley and her wheelchair back in to the car and headed out to a 24 hour pharmacy. David
was on speaker phone in the car directing us through the dark streets of beautiful Highland Park while Ashley was itching like crazy next to me, and I ran numerous red lights! The plan was to go the drive thru lane and ask for Benadryl so that I would not have to take time getting Ashley out of the car and into her wheelchair to get into the pharmacy.
Of course, the drive thru was closed at that hour, and I ended up leaving Ashley on speaker phone with David while I raced in to find the Benadryl. I opened it at the register and left my credit card with the cashier before racing out to give the medicine to Ashley. The observant clerk even said, " So you have an emergency?" Yet, when I returned to retrieve my credit card, the same clerk asked me if I had a CVS rewards card to use. Really?
As we drove back to the hotel, which was only a few blocks from the Dallas Children's Hospital, Ashley's rash was not responding at all to the Benadryl. I went to the ER entrance, only to find out that I had to park down a hill, take out her wheelchair, and push her up the hill and then a ramp to get
into the ER. What happened to the concept of pulling into the ER driveway and having a nurse with a gurney come out to greet you?
After getting checked into the ER, we came in contact with a nurse, a resident, and a pharmacist. Of course, none of them had any idea what POTS is, which is typical of every ER trip! After taking Atarax by mouth so that her port would not have to be accessed, the ER kept an eye on her to make sure she did not have an allergic reaction to the medication that was treating her allergic reaction. A supervising doctor came in the room at one point, and she had actually heard of POTS because a physician friend of hers came down with it after giving birth to her second child.
We were discharged from the hospital at 7:00 am and drove back to our hotel. I promptly put Ashley back to bed, so she could get some sleep before her initial meeting with Dr. Kriprianou at the POTS Treatment Center. I, however, was off to locate a 24 hour pharmacy that was closer than the one we had driven to in the middle of the night to buy Benadryl. Thanks to Siri, I found one close by but would have to wait over an hour for the Atarax to be filled. The only way I was going to stay slightly awake at this point was to go to Starbucks, which just happened to be a block from the pharmacy. I ultimatley decided to stay up that morning and thoroughly dissect Ashley's mounds of medical records in order to be even more prepared to meet with the doctor that afternoon.
The Ronald McDonald House called with an available room again for that night, so after taking Ashley to the doctor for a couple of hours that afternoon and returning to the Holiday Inn for a complimentary very late check out, we drove a half mile to the Ronald McDonald House, our home for the next two weeks.
The facility is only 4 years old and truly amazing. There are 60 rooms, each with 2 queen beds and a private bath. There are family rooms with tv's, DVD players, and computers on each of the four wings. There is a craft room, a play room, a game room, a teen room, a study room, a library with movies and books for all ages as well as a computer with a printer, a chapel, a large great room, an outdoor playground, a basketball court, a large dining room, a huge commercial kitchen, two family
kitchens, four laundry rooms (free of charge with detergent provided), two elevators, and 6 apartments in the transplant wing where patients and their families can live following a transplant or during chemotherapy.
The house offers 3 home cooked meals a day and has a family activity every night after dinner. Various volunteer groups sign up online to serve the meals 365 days a year. They are responsible for buying the groceries, preparing the meal ahead of time, serving the meal, and cleaning up the kitchen afterwards. Volunteers will even deliver food to patients and residents living in the transplant wing so that those people are not exposed to others when coming to meals.
The Ronald McDonald House is my new charity of choice since Ashley and I have benefitted from their services while at the Mayo Clinic for 11 days and now at this house for over 2 weeks. Their philosophy is that sick children heal more quickly when they are with their families and when the families can interact with other families also experiencing a medical crisis. They realize how difficult a medical crisis is on the entire family and believe that families should not have to worry about a place to stay and their next meal to eat so that they can better focus on their child healing and on their family being together for the ill child. We are so blessed to be here, and we are so grateful to have a
quiet and comfortable room while Ashley receives treatment for these two weeks.
In my next post, I will talk about our first meeting with the doctor as well as our second day at the
treatment center. In the meantime, pray that Ashley is engaged and "healthy" during the treatment process. Pray that I am attentive to her needs and that I get the rest I need to do so. Pray for David and the boys back home in San Antonio to stay afloat with work, school, homework, activities, and care of our family dog Grace and Ashley's beloved dog Sadie. We miss them so much already and wish we did not have to be separated.
Until next time.... Angela on behalf of Ashley
Sunday, March 2, 2014
see ya 210
Welcome back to my blog, and thanks again for visiting. In this post, I hope to update ya'll on what's gone on in the past week as well as inform ya'll on an exciting out of town treatment oppurtunity that my family and I are taking advantage of.
On Tuesday, we went back to Dr. Patel's. Even though I was still in pain, he said it was time to begin decreasing the morphine before I became addicted. Dr. Patel said that my site looked great and the scars were healing well, the recovery is most likely taking so darn long because of my fibromyalgia. Downside was he had to move my port (yes, you read that right-move my port) to make sure the pain was under the skin and not above it. Holy ow. He urged me to walk as upright as possible as soon as possible for the fear of not only back problems, but pneumonia (he said if I walk hunched over long enough my lungs will begin collapsing and I'll get pneumonia-yeah we don't want that). My port was also accessed for the first time as he started me on IV medication for three days. One bright spot in this horrible port recovery is how easy accessing my port was! It hurt a good amount when they put the needle in but everyone who I've spoken to who has a port said it hurts the most the first time. There was no searching for veins, wiggling of needles or excess poking-one needle poke and it was in! I had the IV for three days and my oh my how much more convenient it is having it in your port than your arm! I was able to use both of my arms, able to change my t shirt with minimal help and didn't have to consistently worry about the catheter falling out. What a blessing.
On Tuesday night, a lovely 40 degree weather change-with rain-came in. Between the weather change (which means I don't sleep well and my body's conditions worsens), the doctor's appointment the day before, the IV and the continued pain Wednesday was already off to a rough start. On Wednesday I also began my ACT with the writing section, which was 45 minutes long. Writing and reading are my strongest subjects so I felt as if I did okay, although I knew I could do much better if I was feeling up to it and was healthy, which is always a demoralizing and self esteem lowering experience-you want to know you did the best you could. Once I finished the section and my test supervisor had left, I began a five hour episode. Yes, five hour episode. (That set a new record for my longest episode, previous record was two hours.) It was if my body was saying that it had simply had enough. Not only are these episodes exhausting for me, they're hard on my parents as well as they're constantly having to make decisions about what to do, who to call/if to call, etc while watching their child suffer. Once it finally ended, we were all exhausted and I felt miserable. I tried to sleep but once again didn't sleep well as the weather went back up 40 degrees that night and my salt level continued to drop.
I have continued to take a section of the ACT every day from Wednesday until today, when I finally finished, alleluia. Taking that darn test has exhausted me and beaten me up. When I get over tired I also get over emotional which means my family has listened to me cry for a large part of the week. The problem with test taking weeks and time periods is that it limits my ability to work on other school work so I have now fallen behind. I'm going to have to work ridiculously hard these next few days in order to catch up and meet my goal of finishing the nine weeks on time. By Friday I finished my morphine (may or may not have shed a tear when I took my last dose...) and we returned to Patel. He took the IV out, stopped the IV pain meds and started me on Lyrica.
On Saturday, for the first time since my surgery four and a half weeks ago I tried to go "out" to a social event-to a surprise birthday party for my best friend Devon. I didn't feel up to it and the Lyrica wasn't helping my pain level at all, but I thought maybe going out and seeing friends would be the emotional break through I needed and being out would boost my spirits and encourage me to leave the house more. Instead, it did the opposite. Getting there was so much work in itself-my mom bathing me, leaving my hair down, putting on simple make up for the first time in forever (I legitimately forgot how to apply eye liner, I need help learning how to again), putting on clothes other than pajama pants and a t shirt, putting on jewelry, etc. Even with my mom helping me significantly with every single one of these tasks and while laying down while preforming them, by the time I was just done getting ready I was exhausted and in a large amount of pain. Next was getting down the stairs, getting into the car, driving there, getting out of the car and then getting into her house-all tiring and painful tasks. I arrived a few minutes before the other guests so I could settle in and only stayed for about 45 minutes but it was awful, the whole entire time I was fighting back tears and trying not to cry because of the large amount of pain I was in. I couldn't focus on the conversations I was having or the fun I was supposed to be having because I was just trying not to cry. Friends would ask how I was doing and I would say "okay" when in reality I just wanted to cry. Once I said my goodbyes and left, I bawled outside for ten minutes out of sheer pain before my mom could even transport me into the car. I cried the whole car ride home and for a while once I was home. I was so hopeful that this would be my emotional break through, that my depression would ease, and that I would have so much fun I would be encouraged to get out more. Instead, I left in so much pain I never wanted to leave the house again.
That night around 2am I began having trouble breathing. After I took two puffs of my rescue inhaler, my parents contemplated calling Dr. Patel, taking me to the hospital or calling an ambulance. What they ultimately decided to do was to call our neighbor, Mr. Jackson, who is a paramedic. He helped slow down my breathing, but not before it turned into a two hour episode. It was an exhausting night for my parents and I. We are thankful to have Mr. Jackson down the street and are grateful for his help. Upon calling my doctor this morning, he believes it could've been anxiety, exhaustion, an allergic reaction to the new med or a withdrawal from the narcotic, or a combination of any of those things. Because of that, I haven't taken Lyrica or any form of pain meds and am having a tough time managing the pain, to say the least. Consistently fighting back screaming and crying all day isn't very fun. We're calling Dr. Patel again tomorrow to see what his next idea is.
Now for the exciting news! On Wednesday my mom and I will be leaving for a little over two weeks for the POTS Treatment Center in Dallas. The treatment center focuses on biofeedback, which is simply put, retraining your brain. It is noninvasive, Dr. Patel was supportive of our decision to go and we have heard many great testimonies of people feeling better after going there, so we are hopeful that they will be able to help me as well. We know it is not a cure all, but rather perhaps another component-like eating extra salt or drinking lots of water-in my life long battle with managing POTS. I will be in treatment for 3-4 hours a day for two weeks and then there is a machine that I will take home so I can continue to do the biofeedback treatment every day once I get home.
I am hopeful for the possibility of getting better, (my parents and I figure it's worth to go simply because any improvement is improvement from where my health is now) but I'm sad to leave my house, family, friends and puppies for two weeks. Part of the reason we chose this time to go is because it's over my Spring Break, so therefore I would only have one week of tutoring to make up once I get back and it's at the beginning of the quarter which is when typically my work is just getting into me. However, I'm bummed with being gone over Spring Break because it means I won't be able to go to typical fun Spring Break places such as the beach or the lake. Also, a large majority of my closest friends are in college and I was looking forward to seeing them as I haven't seen most of them since Christmas. However, I'm trying to look at the situation as maybe if I get better because of me missing this Spring Break I'll be able to fully enjoy the Spring Break's to come. It's hard being a high schooler though and knowing this is how I'm going to be spending my Spring Break while all my peers are off doing fun things and my sweet college friends are home. We have hotel reservations, but will call the Ronald McDonald House upon our arrival (that's how the system works) to see if any rooms are avaliable. Hopefully we're able to get in soon as it would ease with the cost (the huge treatment center bill is enough in itself!) as well as provide a more "home-y" atmosphere. Ronald McDonald House is a great organization, we stayed in one in Rochester, Minnestoa when we were there for the Mayo Clinic and liked it very much. We are looking for fun things to do in Dallas since I'll be in treatment 3-4 hours a day and then working on homework as well, but I'll still have time to do other things. We plan on seeing family and touring TCU, but other suggestions would be welcome. We are going to be there a while!
I am a total Daddy's girl and am sad to have to be away from my dad for two weeks as well as my brothers, since they add so much joy and humor to our life. We will stay in contact with them through texting and FaceTime (isn't technology neat?) but it won't be the same. Truthfully, the hardest person for me to leave isn't a person, it's my dog Sadie (a 10 month old daschuand mix). Sadie Lou (as we have nicknamed her) is my constant companion who I treat as my child and my best friend. She snuggles with me each night in bed and hangs out in my room during the day with our other dog (a two year old black lab) Grace. She always makes me smile and laugh and she makes my hardest days better. (I know I must sound crazy and weird but trust me when you're home most of your life it's really nice to have a constant companion.) I've been away for her for a night or two but never for a time period this long. I feel like I'll have an especially hard time being away from her since I already know I'll be very lonely while I'm in Dallas. Having my friends visit me won't even be an option since I'll be five hours away and I won't have Sadie Lou to provide me with company.
In conclusion, how can you pray for me? One, for eased pain and a pain med that isn't a narcotic that works for me. Two, for safe travels to Dallas. The drive in itself is enough to wipe me out pretty darn good. We thought about flying since a 45 minute flight is better than a five hour drive for me but we wanted to have our car while we were there and didn't want to pay to rent one. Three, for the treatment to work in some way. Even if it's only a little bit, we are okay with that. Any help is better than none at all. Four, for me to have the energy and ability to finish my school work on time and reach my goal of finishing the quarter on time. Five, for my parents, especially my mom. Being the primary care giver of me while still raising three boys is exhausting on her and it wears her out in every sense. Six, for me to feel comforted, not depressed and lonely, while I'm in Dallas for two weeks. I'm thankful that we at least have an option to try, here's to lots of prayers hoping it works. I'll try to write an update later this week once we're in Dallas.
On Tuesday, we went back to Dr. Patel's. Even though I was still in pain, he said it was time to begin decreasing the morphine before I became addicted. Dr. Patel said that my site looked great and the scars were healing well, the recovery is most likely taking so darn long because of my fibromyalgia. Downside was he had to move my port (yes, you read that right-move my port) to make sure the pain was under the skin and not above it. Holy ow. He urged me to walk as upright as possible as soon as possible for the fear of not only back problems, but pneumonia (he said if I walk hunched over long enough my lungs will begin collapsing and I'll get pneumonia-yeah we don't want that). My port was also accessed for the first time as he started me on IV medication for three days. One bright spot in this horrible port recovery is how easy accessing my port was! It hurt a good amount when they put the needle in but everyone who I've spoken to who has a port said it hurts the most the first time. There was no searching for veins, wiggling of needles or excess poking-one needle poke and it was in! I had the IV for three days and my oh my how much more convenient it is having it in your port than your arm! I was able to use both of my arms, able to change my t shirt with minimal help and didn't have to consistently worry about the catheter falling out. What a blessing.
On Tuesday night, a lovely 40 degree weather change-with rain-came in. Between the weather change (which means I don't sleep well and my body's conditions worsens), the doctor's appointment the day before, the IV and the continued pain Wednesday was already off to a rough start. On Wednesday I also began my ACT with the writing section, which was 45 minutes long. Writing and reading are my strongest subjects so I felt as if I did okay, although I knew I could do much better if I was feeling up to it and was healthy, which is always a demoralizing and self esteem lowering experience-you want to know you did the best you could. Once I finished the section and my test supervisor had left, I began a five hour episode. Yes, five hour episode. (That set a new record for my longest episode, previous record was two hours.) It was if my body was saying that it had simply had enough. Not only are these episodes exhausting for me, they're hard on my parents as well as they're constantly having to make decisions about what to do, who to call/if to call, etc while watching their child suffer. Once it finally ended, we were all exhausted and I felt miserable. I tried to sleep but once again didn't sleep well as the weather went back up 40 degrees that night and my salt level continued to drop.
I have continued to take a section of the ACT every day from Wednesday until today, when I finally finished, alleluia. Taking that darn test has exhausted me and beaten me up. When I get over tired I also get over emotional which means my family has listened to me cry for a large part of the week. The problem with test taking weeks and time periods is that it limits my ability to work on other school work so I have now fallen behind. I'm going to have to work ridiculously hard these next few days in order to catch up and meet my goal of finishing the nine weeks on time. By Friday I finished my morphine (may or may not have shed a tear when I took my last dose...) and we returned to Patel. He took the IV out, stopped the IV pain meds and started me on Lyrica.
On Saturday, for the first time since my surgery four and a half weeks ago I tried to go "out" to a social event-to a surprise birthday party for my best friend Devon. I didn't feel up to it and the Lyrica wasn't helping my pain level at all, but I thought maybe going out and seeing friends would be the emotional break through I needed and being out would boost my spirits and encourage me to leave the house more. Instead, it did the opposite. Getting there was so much work in itself-my mom bathing me, leaving my hair down, putting on simple make up for the first time in forever (I legitimately forgot how to apply eye liner, I need help learning how to again), putting on clothes other than pajama pants and a t shirt, putting on jewelry, etc. Even with my mom helping me significantly with every single one of these tasks and while laying down while preforming them, by the time I was just done getting ready I was exhausted and in a large amount of pain. Next was getting down the stairs, getting into the car, driving there, getting out of the car and then getting into her house-all tiring and painful tasks. I arrived a few minutes before the other guests so I could settle in and only stayed for about 45 minutes but it was awful, the whole entire time I was fighting back tears and trying not to cry because of the large amount of pain I was in. I couldn't focus on the conversations I was having or the fun I was supposed to be having because I was just trying not to cry. Friends would ask how I was doing and I would say "okay" when in reality I just wanted to cry. Once I said my goodbyes and left, I bawled outside for ten minutes out of sheer pain before my mom could even transport me into the car. I cried the whole car ride home and for a while once I was home. I was so hopeful that this would be my emotional break through, that my depression would ease, and that I would have so much fun I would be encouraged to get out more. Instead, I left in so much pain I never wanted to leave the house again.
That night around 2am I began having trouble breathing. After I took two puffs of my rescue inhaler, my parents contemplated calling Dr. Patel, taking me to the hospital or calling an ambulance. What they ultimately decided to do was to call our neighbor, Mr. Jackson, who is a paramedic. He helped slow down my breathing, but not before it turned into a two hour episode. It was an exhausting night for my parents and I. We are thankful to have Mr. Jackson down the street and are grateful for his help. Upon calling my doctor this morning, he believes it could've been anxiety, exhaustion, an allergic reaction to the new med or a withdrawal from the narcotic, or a combination of any of those things. Because of that, I haven't taken Lyrica or any form of pain meds and am having a tough time managing the pain, to say the least. Consistently fighting back screaming and crying all day isn't very fun. We're calling Dr. Patel again tomorrow to see what his next idea is.
Now for the exciting news! On Wednesday my mom and I will be leaving for a little over two weeks for the POTS Treatment Center in Dallas. The treatment center focuses on biofeedback, which is simply put, retraining your brain. It is noninvasive, Dr. Patel was supportive of our decision to go and we have heard many great testimonies of people feeling better after going there, so we are hopeful that they will be able to help me as well. We know it is not a cure all, but rather perhaps another component-like eating extra salt or drinking lots of water-in my life long battle with managing POTS. I will be in treatment for 3-4 hours a day for two weeks and then there is a machine that I will take home so I can continue to do the biofeedback treatment every day once I get home.
I am hopeful for the possibility of getting better, (my parents and I figure it's worth to go simply because any improvement is improvement from where my health is now) but I'm sad to leave my house, family, friends and puppies for two weeks. Part of the reason we chose this time to go is because it's over my Spring Break, so therefore I would only have one week of tutoring to make up once I get back and it's at the beginning of the quarter which is when typically my work is just getting into me. However, I'm bummed with being gone over Spring Break because it means I won't be able to go to typical fun Spring Break places such as the beach or the lake. Also, a large majority of my closest friends are in college and I was looking forward to seeing them as I haven't seen most of them since Christmas. However, I'm trying to look at the situation as maybe if I get better because of me missing this Spring Break I'll be able to fully enjoy the Spring Break's to come. It's hard being a high schooler though and knowing this is how I'm going to be spending my Spring Break while all my peers are off doing fun things and my sweet college friends are home. We have hotel reservations, but will call the Ronald McDonald House upon our arrival (that's how the system works) to see if any rooms are avaliable. Hopefully we're able to get in soon as it would ease with the cost (the huge treatment center bill is enough in itself!) as well as provide a more "home-y" atmosphere. Ronald McDonald House is a great organization, we stayed in one in Rochester, Minnestoa when we were there for the Mayo Clinic and liked it very much. We are looking for fun things to do in Dallas since I'll be in treatment 3-4 hours a day and then working on homework as well, but I'll still have time to do other things. We plan on seeing family and touring TCU, but other suggestions would be welcome. We are going to be there a while!
I am a total Daddy's girl and am sad to have to be away from my dad for two weeks as well as my brothers, since they add so much joy and humor to our life. We will stay in contact with them through texting and FaceTime (isn't technology neat?) but it won't be the same. Truthfully, the hardest person for me to leave isn't a person, it's my dog Sadie (a 10 month old daschuand mix). Sadie Lou (as we have nicknamed her) is my constant companion who I treat as my child and my best friend. She snuggles with me each night in bed and hangs out in my room during the day with our other dog (a two year old black lab) Grace. She always makes me smile and laugh and she makes my hardest days better. (I know I must sound crazy and weird but trust me when you're home most of your life it's really nice to have a constant companion.) I've been away for her for a night or two but never for a time period this long. I feel like I'll have an especially hard time being away from her since I already know I'll be very lonely while I'm in Dallas. Having my friends visit me won't even be an option since I'll be five hours away and I won't have Sadie Lou to provide me with company.
In conclusion, how can you pray for me? One, for eased pain and a pain med that isn't a narcotic that works for me. Two, for safe travels to Dallas. The drive in itself is enough to wipe me out pretty darn good. We thought about flying since a 45 minute flight is better than a five hour drive for me but we wanted to have our car while we were there and didn't want to pay to rent one. Three, for the treatment to work in some way. Even if it's only a little bit, we are okay with that. Any help is better than none at all. Four, for me to have the energy and ability to finish my school work on time and reach my goal of finishing the quarter on time. Five, for my parents, especially my mom. Being the primary care giver of me while still raising three boys is exhausting on her and it wears her out in every sense. Six, for me to feel comforted, not depressed and lonely, while I'm in Dallas for two weeks. I'm thankful that we at least have an option to try, here's to lots of prayers hoping it works. I'll try to write an update later this week once we're in Dallas.
"But I keep on trusting You, even when I am afraid." -Psalm 56:3
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