How October Opened Our Eyes
On October 3rd, we had our appointment with a CHP Neurologist, Dr. Safier. Once again, I was in the presence of a doctor who was patient, kind, empathetic, knowledgeable and listened carefully to my concerns and Elizabeth's medical history. Dr. Safier ordered a bunch of tests to help us find answers to help us help Elizabeth. He ordered several blood and urine tests, an MRI of the brain and spinal cord, and an EEG. He wanted us to schedule a follow up in 4 months. So, I scheduled the follow up when I left. Then, I called Heather, and she helped us to schedule the MRIs. Dr. Safier ordered the MRIs to be done under general anesthesia, so that Elizabeth would be comfortable and still during her testing. They were also going to draw all of her lab work while she was asleep. The EEG would have to be scheduled for another day.
Elizabeth had her follow up with Matt Ford a few weeks later. Since Elizabeth was starting to see so many providers, she was also going to be hooked up with the Diagnostic Referral group at CHP in order to help us coordinate her care. So, Heather scheduled the follow up with Cleft and Craniofacial, the Diagnostic Referral Group (DRG) appointment and the EEG to all be done in one day. My mom and Elizabeth's Speech Therapist went with us on that day. It was a long day, but it would prove helpful on the journey for answers.
Our first appointment on October 17th was with Matt Ford and Dr. Jabbour. They were going to weigh in on Elizabeth's swallow study, her recent cleft diagnosis, and how this tied in to the bigger picture. They reviewed her swallow study with us. It was determined that her thickened liquids did not look any better in her swallow study than liquids that were not thickened. Plus, the thickener gave Elizabeth diarrhea. So, it was decided to pull her from using the thickener. The day before this appointment I found out that, after much persistence about that fact that Elizabeth was not feeling well, Elizabeth had a UTI. Dr. Jabbour also diagnosed that she had an ear infection, so it was good that she was on an antibiotic. Dr. Jabbour wanted to do a type of endoscopy that places a scope through the nose into the throat to shed some additional light into Elizabeth's feeding issues. We agreed to have it done. So, I held her in a chair while they did the scope. I have had this done before, and it is not painful, but is uncomfortable. The doctors discovered that she has a condition called "Pharyngomalacia," which means that her pharynx is floppy. This contributes to both her difficulty breathing and difficulty swallowing. They also found 2 clefts in her larynx, which they were surprised about finding during the scope. The doctor's also found, to their surprise, that based on pulsing close to her larynx during the scope that her carotid arteries are misplaced and are very close to her airway, instead of on the outside of her neck. This misplacement of the carotid arteries, they said, is a hallmark sign of a group of genetic disorders called 22q11. He also felt that seeing genetics to rule 22q11 in or out would be a good decision. Dr. Jabbour explained that he wanted to perform surgery on her pharynx and larynx on December 2nd. She will be in the ICU following surgery for at least 24 hours. The goal of the surgery is to attempt to modify the pharynx to make it easier for her to breathe and swallow, as well as to fill in the clefts in her larynx. However, he wanted her to be cleared by Cardiology before he did the surgery.
After the appointment with Matt Ford and Dr. Jabbour, my head was swirling. Dr. Jabbour kept asking me if I was ok, as he explained the surgery. That is one thing that I love about Elizabeth's doctors: they are always concerned not only about her, but for us as well. We are blessed with a great team of doctors. We left the visit and went to Elizabeth's EEG. She screamed and tried her best to resist having the EEG nodes placed on her head. They swaddled her in a blanket, and I held her and sang to her. She loves when I sing "The Irish Lullaby" , and so that is what I sang. In the NICU, I sang that to her all of the time. Elizabeth eventually fell asleep and slept through the EEG as I held her in my arms.
When we left EEG, we were already really late for our next appointment with the Diagnostic Referral Group physician Dr. Amanda Brown. I was anticipating that they would have us reschedule, but they welcomed us into the office. Dr. Brown was waiting for us. I could tell quickly that she was going to be an excellent addition to the team. Dr. Brown's role will be to help us coordinate all of the different doctor's, reports, etc. She is also a hospitalist, and she can help to add another diagnostic opinion to Elizabeth's team. We reviewed Elizabeth's history, the findings from earlier today, discussed the implications of her recent UTI, and made a plan of action that included a Renal Ultrasound and a follow up appointment. Dr. Brown said that she would talk to her other providers regarding some lingering questions and would get back to me.
So, I mentioned Elizabeth having a UTI (Urinary Tract Infection). If there is one thing that I have learned through this experience, it would be the importance of advocating for your child and being persistent, even if the doctor's disagree with you. So far, we have been blessed with a wonderful team of doctors. They listen, are compassionate, and are such incredibly deep sources of knowledge. However, at the beginning of October, Elizabeth started to spike random fevers. They were not super high, and were usually measuring between 101 and 102 degrees. She was fussy, not sleeping well, and my mother's intuition told me that something was wrong. So, we took her to the doctor. The diagnosis was that she had an Upper Respiratory Infection that was likely viral, which would have to run its course. Dr. Vigliotti gave her a maintenance inhaler, due to her cough and chronic respiratory issues, and the fact that we recently found out that she has been aspirating, etc. He wanted us to follow up in a week to check her cough. So, a week later, we went to the appointment. Elizabeth's cough sounded much better, but the fevers were still lingering. It was still deemed to be "just a virus." A week later, Elizabeth was STILL running these bizarre, intermittent fevers. She had developed a cough and runny nose, again. So, I called down and got an appointment at the pediatricians. This time, a Nurse Practitioner looked Elizabeth over, said she was fine, that it was a virus, and to bring her back in a few days if she still was not better. In a few days, you guessed it, we were back down in the office. The same Nurse Practitioner came in to see Elizabeth. She looked her over and again said that she did not see anything wrong with her, and that Elizabeth did not look sick. At this point, I was super frustrated. I realize that I have NO medical training, but I do know my daughter. I knew that she was not feeling well. I also knew that at this point we were on Day 16 of a virus with lingering fevers, which didn't seem likely to me. So, I did something that I have never done before: I refused to leave until I saw a doctor. The Nurse Practitioner was displeased to say the least, but in a few minutes two pediatricians were in the room. After a review of recent symptoms and medical records, they decided to get a urine sample, a blood test, and do a chest x-ray. The next day, I received an apologetic call from the Nurse Practitioner. The x-ray was clear, and her blood work looked OK. However, her urine showed a high amount of the bacteria E-Coli. This meant that she had a UTI, and that she would need to be put on antibiotics. So, my sweet girl had been battling an Ear infection, Yeast Infection (I forgot to mention her worsening diaper rash that was diagnosed as a yeast infection), and the UTI. If you have never had any of those, then consider yourself lucky. All three are miserable in isolation of one another, and I can't imagine how she felt. Within a few days of the antibiotic, I noticed that the fevers disappeared and my sweet girl's disposition was returning to normal as well. Moral of the story: It pays to be persistent.
We met with Cardiology the following week. It was another great appointment with a great provider, Dr. Concetta Lombardo. The Cardiologist ordered an Echocardiogram just to make sure that Elizabeth's heart was structurally normal. They decided to tack the ECHO onto a bunch of testing that she was to have the following week. So, when we left, I called Heather and she added that test to our following week's day of testing.
Elizabeth was scheduled to have a bunch of testing done on Monday, October 27th. She was going to be put under General Anesthesia, so there were feeding restrictions put into place. Much to Elizabeth's dismay, she awoke at 3:30 a.m. on Monday the 27th and was NOT allowed to have milk. So, in protest, she decided to not go back to sleep until we were on our way to the hospital at 6 a.m. The CHP providers took care of her, and they were able to get all of her testing done. She had an MRI of the brain and spinal cord, an Echocardiogram, a Renal Ultrasound, and several blood and urine tests drawn and sent to the lab. The Anesthesiologist carried Elizabeth in his arms to the procedure room, and when we were allowed to see her in recovery he was holding her against his chest and talking to her. People say all of the time how CHP provides world class care. I'm here to tell you that they do, and in fact, they go above and beyond. The Anesthesiologists actions with Elizabeth more than proved that to be true.
On Tuesday, October 28th, I returned to school. It was about mid-morning when my phone rang. It was CHP, so I answered my phone. It was the Neurologist, and my heart sank. It usually isn't good news when a doctor personally calls you after a test. Dr. Safier was his comforting self. He said that her blood work showed that Elizabeth had anemia that was NOT due to an iron deficiency, and that Dr. Brown would be calling me later in the day about the results. He also said that Elizabeth's brain MRI showed that she had a form of brain damage/ injury called "Periventricular Leukomalacia" or PVL. In PVL, the white matter is diminished in the ventricles. This can cause a wide array of symptoms and difficulties. Dr. Safier did note that he has seen this occur in premature babies, but he also urged a visit with genetics. In light of these results, he was going to order a set of genetic blood testing to get the ball rolling on looking at different chromosomal abnormalities and deletions. I thanked him for calling me and for his time. Honestly, at that point, I wanted to run out of the door, get into my car, and go straight to Elizabeth's and Celtan's day care. I wanted to pick them both up and hold them tight. It was a very long day at work that day. It is never easy to hear that something is wrong with your child, but this is especially true when it isn't something with an easy fix or that can't be fixed at all. While I was grateful for an answer, this was another lesson in the fact that the answers we seek are not necessarily the answers we want to hear.
On a positive note, we got a lot of good news about her testing that was done on that day. Her Renal Ultrasound was normal, and it showed no anomalies or issues with her kidneys. Her ECHO was also normal, and they said that her heart looked "perfect." They also cleared her for surgery based on the visit with the cardiologist and the excellent ECHO. Her Spinal MRI was also normal, and many of her labs that were in at that point looked normal. Aside from the Brain MRI results and the blood work showing non-iron deficiency anemia, we did get a lot of good news out of that day. There was still quite a bit of lab work that was pending, so we would have to wait for the rest of the results. In the meantime, the plan for the anemia was to repeat the blood work in 2-3 months. The doctors were suspecting that the anemia was a result of the recent infections that she was having trouble fighting off. We still maintain that whatever this is, we will meet it head on. We have been thrust into this quest for answers, and we will see it to the finish. We still have hope that whatever it is that we are catching it early, thus helping her prognosis. Above all, it can always be worse!!! We have been blessed with this miracle, and although she has her own set of issues, and we don't yet know exactly the cause of these issues, we do know that it could be a lot worse.
October ended with one of my favorite holidays: Halloween. Celtan loves to help me decorate for Halloween. He also loves to dress up in costumes! This year Celtan was Leonardo from the Teenage Mutant Ninja Turtles. Elizabeth had two costumes: Princess Aurora (Sleeping Beauty) and a Strawberry. We attended the Halloween Party at our church, and I took Celtan Trick or Treating on Halloween Night. Aunt Holly and Uncle Jake watched Elizabeth, and she helped them pass out candy. It was very cold and rainy, so I did not want to take Elizabeth out in the rain. I also did not want to deprive Celtan of Trick or Treating, which he was very excited about. He was thrilled when the Butler Township Fire Truck stopped and the Fireman gave him a treat from the truck. Jason had a football game, so it was nice to have help from family. They have been such a huge help and support to us throughout our life, but they have been exceptionally helpful to us during our recent journey with Elizabeth. We are eternally grateful to our family for their love and support. We love all of you.
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We are also very blessed by our support system at work. Jason and I are both teachers at Karns City High School. In fact, we teach down the hall from each other. Jason teaches 7th Grade Geography and is a football and track coach at KC. I teach 8th grade English and am the advisor for the school's newspaper and TV station. Our colleagues at work are like a second family. They are so kind and caring, and they have done so much to support Jason and I on this journey with Elizabeth. We simply cannot thank them enough for their kindness and support. The staff and administration at KC are truly wonderful people, and we are blessed to be a part of this extended family. We have some pretty awesome students at KC, as well! My eighth graders have been super understanding about my being out of school so much for appointments. They are always asking how Elizabeth is doing and if we are finding anything out. Recently, the KC Gremlinettes gave Elizabeth a purple and silver pom-pom. She LOVES it, and it is very useful, especially for her Vision Therapy.
After the appointment with Matt Ford and Dr. Jabbour, my head was swirling. Dr. Jabbour kept asking me if I was ok, as he explained the surgery. That is one thing that I love about Elizabeth's doctors: they are always concerned not only about her, but for us as well. We are blessed with a great team of doctors. We left the visit and went to Elizabeth's EEG. She screamed and tried her best to resist having the EEG nodes placed on her head. They swaddled her in a blanket, and I held her and sang to her. She loves when I sing "The Irish Lullaby" , and so that is what I sang. In the NICU, I sang that to her all of the time. Elizabeth eventually fell asleep and slept through the EEG as I held her in my arms.
When we left EEG, we were already really late for our next appointment with the Diagnostic Referral Group physician Dr. Amanda Brown. I was anticipating that they would have us reschedule, but they welcomed us into the office. Dr. Brown was waiting for us. I could tell quickly that she was going to be an excellent addition to the team. Dr. Brown's role will be to help us coordinate all of the different doctor's, reports, etc. She is also a hospitalist, and she can help to add another diagnostic opinion to Elizabeth's team. We reviewed Elizabeth's history, the findings from earlier today, discussed the implications of her recent UTI, and made a plan of action that included a Renal Ultrasound and a follow up appointment. Dr. Brown said that she would talk to her other providers regarding some lingering questions and would get back to me.
So, I mentioned Elizabeth having a UTI (Urinary Tract Infection). If there is one thing that I have learned through this experience, it would be the importance of advocating for your child and being persistent, even if the doctor's disagree with you. So far, we have been blessed with a wonderful team of doctors. They listen, are compassionate, and are such incredibly deep sources of knowledge. However, at the beginning of October, Elizabeth started to spike random fevers. They were not super high, and were usually measuring between 101 and 102 degrees. She was fussy, not sleeping well, and my mother's intuition told me that something was wrong. So, we took her to the doctor. The diagnosis was that she had an Upper Respiratory Infection that was likely viral, which would have to run its course. Dr. Vigliotti gave her a maintenance inhaler, due to her cough and chronic respiratory issues, and the fact that we recently found out that she has been aspirating, etc. He wanted us to follow up in a week to check her cough. So, a week later, we went to the appointment. Elizabeth's cough sounded much better, but the fevers were still lingering. It was still deemed to be "just a virus." A week later, Elizabeth was STILL running these bizarre, intermittent fevers. She had developed a cough and runny nose, again. So, I called down and got an appointment at the pediatricians. This time, a Nurse Practitioner looked Elizabeth over, said she was fine, that it was a virus, and to bring her back in a few days if she still was not better. In a few days, you guessed it, we were back down in the office. The same Nurse Practitioner came in to see Elizabeth. She looked her over and again said that she did not see anything wrong with her, and that Elizabeth did not look sick. At this point, I was super frustrated. I realize that I have NO medical training, but I do know my daughter. I knew that she was not feeling well. I also knew that at this point we were on Day 16 of a virus with lingering fevers, which didn't seem likely to me. So, I did something that I have never done before: I refused to leave until I saw a doctor. The Nurse Practitioner was displeased to say the least, but in a few minutes two pediatricians were in the room. After a review of recent symptoms and medical records, they decided to get a urine sample, a blood test, and do a chest x-ray. The next day, I received an apologetic call from the Nurse Practitioner. The x-ray was clear, and her blood work looked OK. However, her urine showed a high amount of the bacteria E-Coli. This meant that she had a UTI, and that she would need to be put on antibiotics. So, my sweet girl had been battling an Ear infection, Yeast Infection (I forgot to mention her worsening diaper rash that was diagnosed as a yeast infection), and the UTI. If you have never had any of those, then consider yourself lucky. All three are miserable in isolation of one another, and I can't imagine how she felt. Within a few days of the antibiotic, I noticed that the fevers disappeared and my sweet girl's disposition was returning to normal as well. Moral of the story: It pays to be persistent.
We met with Cardiology the following week. It was another great appointment with a great provider, Dr. Concetta Lombardo. The Cardiologist ordered an Echocardiogram just to make sure that Elizabeth's heart was structurally normal. They decided to tack the ECHO onto a bunch of testing that she was to have the following week. So, when we left, I called Heather and she added that test to our following week's day of testing.
Elizabeth was scheduled to have a bunch of testing done on Monday, October 27th. She was going to be put under General Anesthesia, so there were feeding restrictions put into place. Much to Elizabeth's dismay, she awoke at 3:30 a.m. on Monday the 27th and was NOT allowed to have milk. So, in protest, she decided to not go back to sleep until we were on our way to the hospital at 6 a.m. The CHP providers took care of her, and they were able to get all of her testing done. She had an MRI of the brain and spinal cord, an Echocardiogram, a Renal Ultrasound, and several blood and urine tests drawn and sent to the lab. The Anesthesiologist carried Elizabeth in his arms to the procedure room, and when we were allowed to see her in recovery he was holding her against his chest and talking to her. People say all of the time how CHP provides world class care. I'm here to tell you that they do, and in fact, they go above and beyond. The Anesthesiologists actions with Elizabeth more than proved that to be true.
On Tuesday, October 28th, I returned to school. It was about mid-morning when my phone rang. It was CHP, so I answered my phone. It was the Neurologist, and my heart sank. It usually isn't good news when a doctor personally calls you after a test. Dr. Safier was his comforting self. He said that her blood work showed that Elizabeth had anemia that was NOT due to an iron deficiency, and that Dr. Brown would be calling me later in the day about the results. He also said that Elizabeth's brain MRI showed that she had a form of brain damage/ injury called "Periventricular Leukomalacia" or PVL. In PVL, the white matter is diminished in the ventricles. This can cause a wide array of symptoms and difficulties. Dr. Safier did note that he has seen this occur in premature babies, but he also urged a visit with genetics. In light of these results, he was going to order a set of genetic blood testing to get the ball rolling on looking at different chromosomal abnormalities and deletions. I thanked him for calling me and for his time. Honestly, at that point, I wanted to run out of the door, get into my car, and go straight to Elizabeth's and Celtan's day care. I wanted to pick them both up and hold them tight. It was a very long day at work that day. It is never easy to hear that something is wrong with your child, but this is especially true when it isn't something with an easy fix or that can't be fixed at all. While I was grateful for an answer, this was another lesson in the fact that the answers we seek are not necessarily the answers we want to hear.
On a positive note, we got a lot of good news about her testing that was done on that day. Her Renal Ultrasound was normal, and it showed no anomalies or issues with her kidneys. Her ECHO was also normal, and they said that her heart looked "perfect." They also cleared her for surgery based on the visit with the cardiologist and the excellent ECHO. Her Spinal MRI was also normal, and many of her labs that were in at that point looked normal. Aside from the Brain MRI results and the blood work showing non-iron deficiency anemia, we did get a lot of good news out of that day. There was still quite a bit of lab work that was pending, so we would have to wait for the rest of the results. In the meantime, the plan for the anemia was to repeat the blood work in 2-3 months. The doctors were suspecting that the anemia was a result of the recent infections that she was having trouble fighting off. We still maintain that whatever this is, we will meet it head on. We have been thrust into this quest for answers, and we will see it to the finish. We still have hope that whatever it is that we are catching it early, thus helping her prognosis. Above all, it can always be worse!!! We have been blessed with this miracle, and although she has her own set of issues, and we don't yet know exactly the cause of these issues, we do know that it could be a lot worse.
October ended with one of my favorite holidays: Halloween. Celtan loves to help me decorate for Halloween. He also loves to dress up in costumes! This year Celtan was Leonardo from the Teenage Mutant Ninja Turtles. Elizabeth had two costumes: Princess Aurora (Sleeping Beauty) and a Strawberry. We attended the Halloween Party at our church, and I took Celtan Trick or Treating on Halloween Night. Aunt Holly and Uncle Jake watched Elizabeth, and she helped them pass out candy. It was very cold and rainy, so I did not want to take Elizabeth out in the rain. I also did not want to deprive Celtan of Trick or Treating, which he was very excited about. He was thrilled when the Butler Township Fire Truck stopped and the Fireman gave him a treat from the truck. Jason had a football game, so it was nice to have help from family. They have been such a huge help and support to us throughout our life, but they have been exceptionally helpful to us during our recent journey with Elizabeth. We are eternally grateful to our family for their love and support. We love all of you.
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