Justice4Ryan
Donation protected
My name is Lisa. As one of Cheryl's best friend, I'm here to help tell her story in hopes that you will see the daily struggles that she is going through with raising her handsome son Ryan. These two are a ray of sunshine wherever they go. They will surely bring a smile to your face if you ever get a chance to meet them, not out of sympathy but because of their lively, cheerful, energized, upbeat personality.
This page is established to help fund any medical matters and necessary costs that may arise; in hopes, that it will help ease some of the burden for Cheryl and Ryan.
You can also follow on Facebook: Justice4Ryan. Please see letter from Cheryl:
Gives a good summary of what’s going on.
10/9/18
My name is Cheryl Allred & I am a single-parent of a 7 (almost 8 year old) son that depends on a tracheostomy tube to breath. Ryan was born at 25 weeks weighing only 1 lbs. 6 ozs. Ryan was in the NICU at TMC for almost 6 months and was in and out of hospitals after that. Ryan was medically unstable for a long time and is still medically fragile. Ryan has been resuscitated several times, including at home. He has had several surgeries, has had several broken bones, has had 8 blood transfusions and multiple procedures thereafter and the list goes on. Ryan has been under anesthesia multiple times. Ryan was mute until 5 1/2. Ryan is still extremely high maintenance medically. He requires suctioning (clearing) of his trachea tube several times during the day and several times a night. At night he wears a pulse ox machine that reads his oxygen level and his heart rate. His heart rate often drops below 65 which sets the machine off all night long. The oxygen level being monitored is vital to his safety. If the trachea tube were to become occluded or fall out (which has happened several times) the monitor sounds an alarm. If you were to ignore these monitors or not hear them the end result would more than likely be DEATH. He cannot breath if the trachea tube falls out or becomes occluded. He also wears heated mist at night which delivers warm moisture to help his lungs stay moist and helps him breath more comfortably. This machine creates a lot of condensation and build up in the tubing that is hooked around his neck. It is vital that this tubing is wrung out at least every 1 to 1.5 hours to avoid the risk of drowning.
His trachea tube also has to be suctioned at the same time. Sleeping for me is never more than just cat naps. Ryan also throws up regularly due to the gastroparesis and EOE disease. He also gags a lot because of the mucus that builds up in the trachea tube which often results in vomiting. This is all stuff that isn’t included in the ALTCS report. They have a specific set of questions and these other side effects of being an extreme preemie gets overlooked.
They mention how well he is doing and how much he has improved, which is true, but not since they approved him in January 2017. Mist of his big improvements happened by 5 1/2. He talks a little better since then and the school exited him from his IEP and that is all that has changed since they approved him. They are overlooking the fact that his airway is DEADLY and he requires a lot of care on a daily basis 24 hours! How can they say he’s not at risk of being institutionalized? Seriously? Death or the lack of oxygen to his brain would cause him to be institutionalized!
Ryan used to be covered by DDD based on the diagnosis of cerebral palsy. Apparently this diagnosis was incorrect because he grew out of the symptoms that made the doctors think he had this diagnosis. However, once you are approved by DDD they don’t medically re-assess the child again until they are 6 years old. We lost DDD in January 2017. At this point ALTCS determined he was medically eligible and picked him up. They have now decided he is no longer eligible and have terminated him as of 10/31/18. This makes no sense because he hasn’t “medically” changed since January 2017. At the end of the day he is still medically fragile. When I am not with Ryan he MUST be accompanied by a skilled one on one nurse that is trachea trained. In May 2018, a few weeks before he completed 1st grade, Ryan had a student aggressively try to remove his Trach tube while on the playground. Luckily he had his skilled one on one nurse in eyes view who was able to diffuse the situation. Imagine having to worry about the safety of your medically fragile child when he’s not in your eyesight.
Ryan currently has several diagnoses and requires a lot of care.
Trachea Tube to breath Gastroparesis
Eosinophilic Esophagitis Disease Gerd
Bilateral Vocal Cord Paralysis
Hiatal Hernia
Osteopenia
His right eye is showing deterioration
Speech issues with pronunciation Anger and anxiety
Ryan has been a challenge to raise. I sat in the NICU with him for MONTHS and almost 8 years later he is still a full time job. During the NICU stay I obviously was not working. Once he was home I had to figure out how to keep a roof over our heads and have an extremely flexible schedule due to the massive amounts of doctors appointments and hospital procedures etc so I started cleaning houses. For the first few years I had to take him and my Aunt to work with me because he was so hands on medically, and still is. At that point he also had a feeding tube in place. I had limited daytime help from nurses because he was so unstable that I had to use all of my hours DDD was providing to have a nurse every night. When Ryan turned 3 he had made some good progress and was much more stable. At this point I had my mother and aunt watch him during most of my work week so I could continue to have the night nursing covered. Between the age of 3-4 my mother and my aunt (who are both over 70) just couldn’t assist on a regular basis any longer so I shifted my hours DDD provided from nighttime help to daytime help. I still had roughly 3 nights a week I could still have a nurse pull the night shift. After DDD terminated and ALTCS took over in
January 2017 my hours were shortened and night nursing has been scarce. Respite hours were no longer available, unless I want to drop him off at the ALTCS nursing home so I can have a weekend off. Wow........ I have no words for this.
Since 2017 I have had to pull the night shift and literally have become accustomed to no more than cat naps for regular sleep. I get up every 1.5 hours. I did have some over night help on Saturday nights, that is if the nursing agency could staff someone and that’s a whole different area that needs huge improvement.
ALTCS terminating is disastrous for me. I am a single parent with no family support. The family that I do have local are to old and sickly and they just can’t safely help. His father lives in Phoenix and is remarried, and pays $225 month for child support and that’s the only income Ryan receives. Because of the distance and the limited visits his father is not sufficiently qualified to bath him, do Trach care, Trach changes nor has been responsible in giving scheduled medications on time or at all.
I have to be able to work. I have busted my but climbing out of the “welfare system” and here I am about to be thrown back into welfare. I have built a decent clientele with my cleaning business and was hoping to expand until this problem surfaced. Right now my income fluctuates week to week and month to month. It would be to difficult for myself and access to figure out if I qualify for medical services month to month. And at the end of the day access is not sufficient in the services they provide, not providing skilled nursing is key and I doubt they cover all the medical equipment necessary to keep him safe and the supplies that we need monthly. Currently I have the Vail school district paying for a nurse to accompany Ryan to school. This is separate from ALTCS. They leave at 7am and return by 2:15pm. Without ALTCS I will have to be home from work by 2:15 which will cut my income SIGNIFICANTLY. Also while he is on summer breaks and any half days or holidays I will not be able to work at all. There is not a daycare out there who’s insurance would allow them to take in a handicap kid and they cannot provide one on one skilled nursing services that is essential for his health and well being. There is much more to him than suctioning his Trach. There are several times a day that medications have to be administered on time, vital signs need taken, and if his EOE disease flares up vomiting can be a life and death situation if he aspirates. Without skilled nursing in place in a school or daycare setting other students/children can pose a danger to his life as mentioned in paragraph 1. Trach changes are not normal with this particular individual, we only have seconds to reinsert the Trach tube. Trach changes are not typical with this individual,
several of them are traumatic. There is only seconds to reinsert a new Trach until he is in distress. I won’t even administer a Trach change on my own without a skilled nurse for stand by assistance for emergency suctioning, emergency administration of oxygen or to dial 911 (which has had to be done). I don’t even allow my skilled nurses to routinely change his Trach (which is done weekly) which they are qualified to do except with this individual. His airway is not stable in any way. He has had so many traumatic experiences with his Trach over the years that even now basic daily Trach care causes him to gag and causes physical distress to where he is sweating and clammy and has an elevated heart rate.
There has to be some kind of assistance provided for a child of Ryan’s nature. We are falling through the cracks with a mentally normal but physically handicapped child whose single parent with no support system, other than skilled nursing, will be forced back into the welfare system that I worked so hard at to climb out of. I have taken the time to use the services like physical therapy, occupational therapy, speech therapy, teaching him sign language which I couldn’t have done without the assistance of my skilled nurses. It is my duty as his parent to do everything in my power to make sure that he grows up and reaches his highest potential. If I lose skilled nursing how can I work and provide for my son and supply a safe happy environment? How can he continue to progress into the successful adult he has the potential to be? He won’t......
Ryan is being discriminated against for his age & his healthy mind. Also I have no respite hours and the lack of sleep is wearing on my well being as well. When I asked about getting respite I was told I can take my 7 yr old son to a nursing home for the weekend so I can catch a break. I would love to see what social media would do with that one! If I don’t have the proper tools, medical insurance, skilled nursing, physicians in Phoenix, the right to go to public schools, medical supplies and medical equipment (pulse ox machine, heated mist, suction machine etc), medical supplies *listed on another page, medications listed on that page how can Ryan proceed to evolve into the productive member of society that he has the capacity to reach? I am not a one man show, the saying it takes a village really rings true in our case. Without everything mentioned above this child would absolutely not be who he is today.
ALTCS feels he isn’t eligible because he’s not “at risk” of being institutionalized, but he is AT RISK of DYING which in my eyes is much more significant. Again if that tube falls out or gets blocked he’s at risk for loss of oxygen to his brain and he could end up dead or brain dead for ever.
I have enough to worry about being a single parent of a handicapped kid. What I don’t need and shouldn’t have to do is worry about his health insurance and skilled nursing services being terminated. I’m not asking for help that isn’t a necessity to keep him safe and progressing in the right direction. I have spent countless hours and sleepless nights taking care of him. I have been his voice (he was mute until almost 6), his advocate, his nurse, his life savor, his provider, his teacher, his physical therapist, his Occupatinal therapist and the list goes on. I’m not asking for anything that isn’t vital for his safety and progress. Someday he will be able to care for his Trach and safely change it. Right now he is not old enough nor does he have the dexterity or the maturity to safely take care of his own Trach. Now is not the time to terminate any of the services, supplies etc that we are currently receiving.
I am sending this letter to everyone I can possibly think of that may be of some kind of assistance in getting justice for Ryan. Everyone loves a success story which is exactly what Ryan is. He deserves the opportunity to keep progressing in a positive manor and have the assistance that he deserves to have. I deserve to be able to continue working and have some sort of self worth without being harassed and knocked back down so it becomes impossible for me to continue working with my son and for me to provide a safe positive environment for him to bloom into the awesome adult that he will be someday.
Sincerely,
Cheryl Allred [email redacted]
Erythrom Eth 200mg/5ml - treats gastroparesis Nexium 20mg powder pack - treats GERD Budesonide 0.5mg/2ml vials - treats EOE disease Cyproheptadine 2mg/5ml Syrup - growth Calcium Carb 1250mg/5ml suspense - bones Vitamin D - 600iu - bones.
$9.00
Heated Mist
Nebulizer
Suction machine
Pulse Ox machine
Supplies for all this equipment & his trachea care $1580 per month for just the supplies.
This page is established to help fund any medical matters and necessary costs that may arise; in hopes, that it will help ease some of the burden for Cheryl and Ryan.
You can also follow on Facebook: Justice4Ryan. Please see letter from Cheryl:
Gives a good summary of what’s going on.
10/9/18
My name is Cheryl Allred & I am a single-parent of a 7 (almost 8 year old) son that depends on a tracheostomy tube to breath. Ryan was born at 25 weeks weighing only 1 lbs. 6 ozs. Ryan was in the NICU at TMC for almost 6 months and was in and out of hospitals after that. Ryan was medically unstable for a long time and is still medically fragile. Ryan has been resuscitated several times, including at home. He has had several surgeries, has had several broken bones, has had 8 blood transfusions and multiple procedures thereafter and the list goes on. Ryan has been under anesthesia multiple times. Ryan was mute until 5 1/2. Ryan is still extremely high maintenance medically. He requires suctioning (clearing) of his trachea tube several times during the day and several times a night. At night he wears a pulse ox machine that reads his oxygen level and his heart rate. His heart rate often drops below 65 which sets the machine off all night long. The oxygen level being monitored is vital to his safety. If the trachea tube were to become occluded or fall out (which has happened several times) the monitor sounds an alarm. If you were to ignore these monitors or not hear them the end result would more than likely be DEATH. He cannot breath if the trachea tube falls out or becomes occluded. He also wears heated mist at night which delivers warm moisture to help his lungs stay moist and helps him breath more comfortably. This machine creates a lot of condensation and build up in the tubing that is hooked around his neck. It is vital that this tubing is wrung out at least every 1 to 1.5 hours to avoid the risk of drowning.
His trachea tube also has to be suctioned at the same time. Sleeping for me is never more than just cat naps. Ryan also throws up regularly due to the gastroparesis and EOE disease. He also gags a lot because of the mucus that builds up in the trachea tube which often results in vomiting. This is all stuff that isn’t included in the ALTCS report. They have a specific set of questions and these other side effects of being an extreme preemie gets overlooked.
They mention how well he is doing and how much he has improved, which is true, but not since they approved him in January 2017. Mist of his big improvements happened by 5 1/2. He talks a little better since then and the school exited him from his IEP and that is all that has changed since they approved him. They are overlooking the fact that his airway is DEADLY and he requires a lot of care on a daily basis 24 hours! How can they say he’s not at risk of being institutionalized? Seriously? Death or the lack of oxygen to his brain would cause him to be institutionalized!
Ryan used to be covered by DDD based on the diagnosis of cerebral palsy. Apparently this diagnosis was incorrect because he grew out of the symptoms that made the doctors think he had this diagnosis. However, once you are approved by DDD they don’t medically re-assess the child again until they are 6 years old. We lost DDD in January 2017. At this point ALTCS determined he was medically eligible and picked him up. They have now decided he is no longer eligible and have terminated him as of 10/31/18. This makes no sense because he hasn’t “medically” changed since January 2017. At the end of the day he is still medically fragile. When I am not with Ryan he MUST be accompanied by a skilled one on one nurse that is trachea trained. In May 2018, a few weeks before he completed 1st grade, Ryan had a student aggressively try to remove his Trach tube while on the playground. Luckily he had his skilled one on one nurse in eyes view who was able to diffuse the situation. Imagine having to worry about the safety of your medically fragile child when he’s not in your eyesight.
Ryan currently has several diagnoses and requires a lot of care.
Trachea Tube to breath Gastroparesis
Eosinophilic Esophagitis Disease Gerd
Bilateral Vocal Cord Paralysis
Hiatal Hernia
Osteopenia
His right eye is showing deterioration
Speech issues with pronunciation Anger and anxiety
Ryan has been a challenge to raise. I sat in the NICU with him for MONTHS and almost 8 years later he is still a full time job. During the NICU stay I obviously was not working. Once he was home I had to figure out how to keep a roof over our heads and have an extremely flexible schedule due to the massive amounts of doctors appointments and hospital procedures etc so I started cleaning houses. For the first few years I had to take him and my Aunt to work with me because he was so hands on medically, and still is. At that point he also had a feeding tube in place. I had limited daytime help from nurses because he was so unstable that I had to use all of my hours DDD was providing to have a nurse every night. When Ryan turned 3 he had made some good progress and was much more stable. At this point I had my mother and aunt watch him during most of my work week so I could continue to have the night nursing covered. Between the age of 3-4 my mother and my aunt (who are both over 70) just couldn’t assist on a regular basis any longer so I shifted my hours DDD provided from nighttime help to daytime help. I still had roughly 3 nights a week I could still have a nurse pull the night shift. After DDD terminated and ALTCS took over in
January 2017 my hours were shortened and night nursing has been scarce. Respite hours were no longer available, unless I want to drop him off at the ALTCS nursing home so I can have a weekend off. Wow........ I have no words for this.
Since 2017 I have had to pull the night shift and literally have become accustomed to no more than cat naps for regular sleep. I get up every 1.5 hours. I did have some over night help on Saturday nights, that is if the nursing agency could staff someone and that’s a whole different area that needs huge improvement.
ALTCS terminating is disastrous for me. I am a single parent with no family support. The family that I do have local are to old and sickly and they just can’t safely help. His father lives in Phoenix and is remarried, and pays $225 month for child support and that’s the only income Ryan receives. Because of the distance and the limited visits his father is not sufficiently qualified to bath him, do Trach care, Trach changes nor has been responsible in giving scheduled medications on time or at all.
I have to be able to work. I have busted my but climbing out of the “welfare system” and here I am about to be thrown back into welfare. I have built a decent clientele with my cleaning business and was hoping to expand until this problem surfaced. Right now my income fluctuates week to week and month to month. It would be to difficult for myself and access to figure out if I qualify for medical services month to month. And at the end of the day access is not sufficient in the services they provide, not providing skilled nursing is key and I doubt they cover all the medical equipment necessary to keep him safe and the supplies that we need monthly. Currently I have the Vail school district paying for a nurse to accompany Ryan to school. This is separate from ALTCS. They leave at 7am and return by 2:15pm. Without ALTCS I will have to be home from work by 2:15 which will cut my income SIGNIFICANTLY. Also while he is on summer breaks and any half days or holidays I will not be able to work at all. There is not a daycare out there who’s insurance would allow them to take in a handicap kid and they cannot provide one on one skilled nursing services that is essential for his health and well being. There is much more to him than suctioning his Trach. There are several times a day that medications have to be administered on time, vital signs need taken, and if his EOE disease flares up vomiting can be a life and death situation if he aspirates. Without skilled nursing in place in a school or daycare setting other students/children can pose a danger to his life as mentioned in paragraph 1. Trach changes are not normal with this particular individual, we only have seconds to reinsert the Trach tube. Trach changes are not typical with this individual,
several of them are traumatic. There is only seconds to reinsert a new Trach until he is in distress. I won’t even administer a Trach change on my own without a skilled nurse for stand by assistance for emergency suctioning, emergency administration of oxygen or to dial 911 (which has had to be done). I don’t even allow my skilled nurses to routinely change his Trach (which is done weekly) which they are qualified to do except with this individual. His airway is not stable in any way. He has had so many traumatic experiences with his Trach over the years that even now basic daily Trach care causes him to gag and causes physical distress to where he is sweating and clammy and has an elevated heart rate.
There has to be some kind of assistance provided for a child of Ryan’s nature. We are falling through the cracks with a mentally normal but physically handicapped child whose single parent with no support system, other than skilled nursing, will be forced back into the welfare system that I worked so hard at to climb out of. I have taken the time to use the services like physical therapy, occupational therapy, speech therapy, teaching him sign language which I couldn’t have done without the assistance of my skilled nurses. It is my duty as his parent to do everything in my power to make sure that he grows up and reaches his highest potential. If I lose skilled nursing how can I work and provide for my son and supply a safe happy environment? How can he continue to progress into the successful adult he has the potential to be? He won’t......
Ryan is being discriminated against for his age & his healthy mind. Also I have no respite hours and the lack of sleep is wearing on my well being as well. When I asked about getting respite I was told I can take my 7 yr old son to a nursing home for the weekend so I can catch a break. I would love to see what social media would do with that one! If I don’t have the proper tools, medical insurance, skilled nursing, physicians in Phoenix, the right to go to public schools, medical supplies and medical equipment (pulse ox machine, heated mist, suction machine etc), medical supplies *listed on another page, medications listed on that page how can Ryan proceed to evolve into the productive member of society that he has the capacity to reach? I am not a one man show, the saying it takes a village really rings true in our case. Without everything mentioned above this child would absolutely not be who he is today.
ALTCS feels he isn’t eligible because he’s not “at risk” of being institutionalized, but he is AT RISK of DYING which in my eyes is much more significant. Again if that tube falls out or gets blocked he’s at risk for loss of oxygen to his brain and he could end up dead or brain dead for ever.
I have enough to worry about being a single parent of a handicapped kid. What I don’t need and shouldn’t have to do is worry about his health insurance and skilled nursing services being terminated. I’m not asking for help that isn’t a necessity to keep him safe and progressing in the right direction. I have spent countless hours and sleepless nights taking care of him. I have been his voice (he was mute until almost 6), his advocate, his nurse, his life savor, his provider, his teacher, his physical therapist, his Occupatinal therapist and the list goes on. I’m not asking for anything that isn’t vital for his safety and progress. Someday he will be able to care for his Trach and safely change it. Right now he is not old enough nor does he have the dexterity or the maturity to safely take care of his own Trach. Now is not the time to terminate any of the services, supplies etc that we are currently receiving.
I am sending this letter to everyone I can possibly think of that may be of some kind of assistance in getting justice for Ryan. Everyone loves a success story which is exactly what Ryan is. He deserves the opportunity to keep progressing in a positive manor and have the assistance that he deserves to have. I deserve to be able to continue working and have some sort of self worth without being harassed and knocked back down so it becomes impossible for me to continue working with my son and for me to provide a safe positive environment for him to bloom into the awesome adult that he will be someday.
Sincerely,
Cheryl Allred [email redacted]
Erythrom Eth 200mg/5ml - treats gastroparesis Nexium 20mg powder pack - treats GERD Budesonide 0.5mg/2ml vials - treats EOE disease Cyproheptadine 2mg/5ml Syrup - growth Calcium Carb 1250mg/5ml suspense - bones Vitamin D - 600iu - bones.
$9.00
Heated Mist
Nebulizer
Suction machine
Pulse Ox machine
Supplies for all this equipment & his trachea care $1580 per month for just the supplies.
Organizer and beneficiary
Weesa Soo Wrong
Organizer
Vail, AZ
Cheryl Allred
Beneficiary
