Roanans Rebellion Against CF
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Our journey with Cystic Fibrosis began with a knock on the door two weeks after my perfect son Roanan was born. A lady from the state was standing on my porch in the cold at 8am. She told us Roanan's newborn screening came back irregular, to be more specific, his IRT levels was 202.12. Concern and fear instantly filled mine and Seths heart. We had no clue what a high IRT level meant, but we felt certain it wasn't good. Immediately after she left, we jumped on Google and did as much research as we could before we had to get ready and get him retested at noon... Our search quickly told us that a high IRT, immunoreactive trypsinogen, from the newborn screening was Cystic Fibrosis. Tears filled my eyes, my face, and the carpet. How could something be wrong with my child? He seemed perfect. he has zero symptoms. He wasn't underweight, he wasn't coughing or wheezing, his poop didn't smell weird, and he didn't taste like the ocean. Then we read about how often the newborn screening reflects a "false positive" due to a bad sample of blood, and we relaxed a little. Neither of our family's had any known history of CF or lung issues so we felt relatively certain that Roanan just had a bad test.
At noon, he got his heel pricked again and large drops of blood filled the circles that I believed would soon tell me my son had normal levels and he was perfectly healthy... Two days after the retest we received a call from a pediatric pulmonologist who told us that the second heel prick, IRT test was also positive. And she already had us an appointment made for the next week to get a sweat test performed... Seth and I were filled with fear, concern, and helplessness. We began to blame ourselves for all of this extra testing, and our hope began to fade. The days waiting for the sweat test were long; and full of confusion, research, prayers, and tears.
Finally the day came for the sweat test, and we had no clue what to expect. We had read that the test could be lengthy and that not all babies make enough sweat to be tested and it would be attempted at a later date. But we went into it with an open mind and loads of hope that R would make enough sweat during the first 30 minute interval... Thankfully, he did! It took one stimulation, one blanket, and 30 minutes for the test to be completed. Now we had to wait for the results...
24 hours later the call came. Unfortunately, she couldn't tell us anything over the phone. I drilled her for information and she kept repeating that all of my questions would be answered the following day. At this time we tried to remain confident that she was going to calm our fears by telling us that his sweat test came back normal, and that she was sorry for all of the stress created from the screenings. However, this was not the case.
The next day she handed us a book on Cystic Fibrosis and told us that she was 99.9% certain that Roanan had CF, but before she could confirm for 100% we had to get another positive sweat test (which was scheduled for the next day). Seth and I were silent the whole drive home. We were filled with anger, fear, helplessness, and a glimmer of hope that R was that .1%...
The next day we got the second sweat test performed, and the 24 hours it took to get the results back felt like an eternity. But the call eventually came and told us to go back to the pulmonologist to get the results. Once again, we got ready and made the 45 minute drive to the doctor. Silence accompanied by fear and confirmation filled the car... I think we knew the results prior to arrival and by this time we were close to acceptance that our son did indeed have CF...
By the time we got to the pulmonologist we had gathered our emotions and we were prepared to hear the scary news that our son had cystic fibrosis. We entered the cold doctors office and we were quickly placed in a room. Soon after, the pulmonologist entered and explained that that the second sweat test was also high. This test resulted in a high score of 92. The doctor was very positive as she explained treatment options and how we would keep R as healthy as possible.She tried to comfort us as much as she could, and she kept explaining how right now was a perfect time to be diagnosed with CF. Every time she said that I just got angrier and angrier. How could she stand there and say it was a perfect time to have CF?! Was her son being diagnosed with an incurable disease?! NO!!!! NEVER is a perfect time to have CF is all I kept repeating in my head... I'm pretty sure that due to my fixation on "my son has Cystic Fibrosis" I barely heard every other word she said...
She sent us home that day with a nebulizer, a prescription for Albuterol (2X daily), a vitamin supplement (1X daily), and hope. Hope that we would find a cure for our son. Hope that he would be able to do everything that kids without CF can do, and more.
On the ride home, I began to understand what she meant when she kept repeating that right now was a perfect time to be diagnosed with Cystic Fibrosis. Right now there is so much research being applied to find a cure for CF. There is so much hope for those living with CF and for those being diagnosed every day. We will be positive and hopeful that soon we will have a cure.
But for right now, we will live everyday one breath at a time. We will cherish every moment that we have, and we will fight everyday for a cure. We will become a pro with the nebulizer, and make everyday life for R as easy and as normal as possible. We will try to understand God's plan and question him never. We will love our perfect boy and thank God for blessing us with him every second for everyday. Words cannot begin to describe how thankful I am for being the mom of a brave little man, who fights for every breath, who smiles as big as he can, and who holds every beat of my heart in his strong little hands. In his eyes I see all of dreams come true.
This is my family's journey rebelling against Cystic Fibrosis.
•Currently, we go to see our specialist every or every other week. She is 45+ minutes from our home, but we thank the Lord for having a specialist to help our family. Roanan is on Ranitidine, aquadex, albuterol, hypersal, Creon, 2 skin ointments and we are trying to get our insurance to cover nexium. Roanan does multiple treatments a day and gets chest therapy 3 times a day 20 minute sessions. God has blessed us with a perfect son and an amazing life. We are so thankful for friends and family who are helping us with out journey. We know God has a beautiful plan for our son and he is unveiling it to us every day. We set up this page because many people have asked how to help us... Thank you in advance for your prayers and support.
For updates:
[email redacted]
Roanans Rebellion
At noon, he got his heel pricked again and large drops of blood filled the circles that I believed would soon tell me my son had normal levels and he was perfectly healthy... Two days after the retest we received a call from a pediatric pulmonologist who told us that the second heel prick, IRT test was also positive. And she already had us an appointment made for the next week to get a sweat test performed... Seth and I were filled with fear, concern, and helplessness. We began to blame ourselves for all of this extra testing, and our hope began to fade. The days waiting for the sweat test were long; and full of confusion, research, prayers, and tears.
Finally the day came for the sweat test, and we had no clue what to expect. We had read that the test could be lengthy and that not all babies make enough sweat to be tested and it would be attempted at a later date. But we went into it with an open mind and loads of hope that R would make enough sweat during the first 30 minute interval... Thankfully, he did! It took one stimulation, one blanket, and 30 minutes for the test to be completed. Now we had to wait for the results...
24 hours later the call came. Unfortunately, she couldn't tell us anything over the phone. I drilled her for information and she kept repeating that all of my questions would be answered the following day. At this time we tried to remain confident that she was going to calm our fears by telling us that his sweat test came back normal, and that she was sorry for all of the stress created from the screenings. However, this was not the case.
The next day she handed us a book on Cystic Fibrosis and told us that she was 99.9% certain that Roanan had CF, but before she could confirm for 100% we had to get another positive sweat test (which was scheduled for the next day). Seth and I were silent the whole drive home. We were filled with anger, fear, helplessness, and a glimmer of hope that R was that .1%...
The next day we got the second sweat test performed, and the 24 hours it took to get the results back felt like an eternity. But the call eventually came and told us to go back to the pulmonologist to get the results. Once again, we got ready and made the 45 minute drive to the doctor. Silence accompanied by fear and confirmation filled the car... I think we knew the results prior to arrival and by this time we were close to acceptance that our son did indeed have CF...
By the time we got to the pulmonologist we had gathered our emotions and we were prepared to hear the scary news that our son had cystic fibrosis. We entered the cold doctors office and we were quickly placed in a room. Soon after, the pulmonologist entered and explained that that the second sweat test was also high. This test resulted in a high score of 92. The doctor was very positive as she explained treatment options and how we would keep R as healthy as possible.She tried to comfort us as much as she could, and she kept explaining how right now was a perfect time to be diagnosed with CF. Every time she said that I just got angrier and angrier. How could she stand there and say it was a perfect time to have CF?! Was her son being diagnosed with an incurable disease?! NO!!!! NEVER is a perfect time to have CF is all I kept repeating in my head... I'm pretty sure that due to my fixation on "my son has Cystic Fibrosis" I barely heard every other word she said...
She sent us home that day with a nebulizer, a prescription for Albuterol (2X daily), a vitamin supplement (1X daily), and hope. Hope that we would find a cure for our son. Hope that he would be able to do everything that kids without CF can do, and more.
On the ride home, I began to understand what she meant when she kept repeating that right now was a perfect time to be diagnosed with Cystic Fibrosis. Right now there is so much research being applied to find a cure for CF. There is so much hope for those living with CF and for those being diagnosed every day. We will be positive and hopeful that soon we will have a cure.
But for right now, we will live everyday one breath at a time. We will cherish every moment that we have, and we will fight everyday for a cure. We will become a pro with the nebulizer, and make everyday life for R as easy and as normal as possible. We will try to understand God's plan and question him never. We will love our perfect boy and thank God for blessing us with him every second for everyday. Words cannot begin to describe how thankful I am for being the mom of a brave little man, who fights for every breath, who smiles as big as he can, and who holds every beat of my heart in his strong little hands. In his eyes I see all of dreams come true.
This is my family's journey rebelling against Cystic Fibrosis.
•Currently, we go to see our specialist every or every other week. She is 45+ minutes from our home, but we thank the Lord for having a specialist to help our family. Roanan is on Ranitidine, aquadex, albuterol, hypersal, Creon, 2 skin ointments and we are trying to get our insurance to cover nexium. Roanan does multiple treatments a day and gets chest therapy 3 times a day 20 minute sessions. God has blessed us with a perfect son and an amazing life. We are so thankful for friends and family who are helping us with out journey. We know God has a beautiful plan for our son and he is unveiling it to us every day. We set up this page because many people have asked how to help us... Thank you in advance for your prayers and support.
For updates:
[email redacted]
Roanans Rebellion
Organizer
Tanner Bragdon
Organizer
Greeneville, TN
