Breathe For Aubry
Donation protected
Dear Friends and Family,
This has been weighing heavy on my heart for a while now, and I feel like I have finally reached a point where I’m ready to ask for help.
As most of you know by now, Aubry has quite the medical diagnosis list and has been through quite a bit in her short 5 years of life. Between a divorce, 14 surgeries and countless hospitalizations due to her rare medical condition, we’re at a crossroad now. With Aubry in her last year of preschool I’m preparing to start the IEP/504 process for school but with the severity of her Ciliary Dysfunction, her medical team and myself are genuinely stumped on the logistics of this. 2018 has been much healthier for Aubry despite 3 surgeries in the month of January. We went on our Make-A-Wish trip at the end of January which showed us how nice it is to enjoy something so magical and stress free despite the medical equipment needed to be taken with us. When we went on this trip, Make-A-Wish rented us a Portable Oxygen Concentrator which is FAA certified meaning Aubry was able to use this anywhere. It was really quiet, it was easy to cart around with us and most of all it made our lives so much easier between everything else we deal with on a daily basis. Unfortunately when we returned from our trip, we had to return the device. Aubry currently has a HUGE oxygen concentrator with the option to fill our own ‘portable’ oxygen tanks which when being used only last a few hours and limits us so incredibly much. These same tanks take upwards of 3 hours to refill. This concentrator not only takes up a decent amount of space, but it is incredibly loud, it makes whatever room it is in extremely hot and it is just not working well for us. September of this year after a series of clinical visits, we saw Aubry’s aerodigestive team where I signed surgery number 15 consent forms for January 2019 but this surgery was all contingent upon a sleep study, a swallow study and a complete abdominal ultrasound all of which we have now completed. Fast forward to the end of November and Aubry’s team finally has those results which they had expedited. Just this last week after spending the day at Stanford with our Pulmonary/Cystic Fibrosis and Sleep Medicine doctor our next options are, a Cardiac Cath where we would look deeper into Aubry’s form of a Congenital Heart Defect and Ciliary Dysfunction. Aubry’s team would specifically be looking more in depth into Pulmonary Vascular Disease and depending on those results they would consider a lung biopsy. Basically, Aubry’s body cannot maintain normal oxygen levels, and her team is trying to figure out why. Not that any of this is easy to process or deal with but the main issue were running into now is that fact that Aubry’s team feels as if a Portable Oxygen Concentrator would be more beneficial and useful for Aubry long term. Aubry’s team sent the referral for this to insurance but warned me ahead of time that insurance most likely wouldn’t cover the cost of this machine because Aubry is not 14 years old. Just this week I got the call from our Durable Medical Supply company saying our insurance would not cover the cost of the device and our only option going forward is to purchase this machine out of pocket. Sure, no big deal, right?
I’m often times asked if I need any help, and my answer is always no, or “keep us in your prayers.” After thinking and praying about this for long enough I feel like I’m ready to accept any and all help that I can get as a single mom and Aubry's sole caretaker to relieve some of the financial stress for outright purchasing this Portable Oxygen Concentrator. The company that we are working with, is going to give us the best possible price on this given our situation. The owner Todd had me in tears when he first reached out to me. This will include a lifetime warranty, extra batteries and just so much peace of mind all around (which I’ve learned through this whole medical journey, peace of mind is SO incredibly important.) This Portable Oxygen Concentrator is also something that Aubry will be able to carry with her to school if needed, run her medicines through it if we are out and about and so much more ‘freedom.’
All in all, this medical journey has not been easy for me, let alone asking for help. It has taken some time to compose my thoughts and feelings to even get to this point. If we get more funds than asking for, they will be used for our insurance deductible which will be met just 4 days into 2019, as well as any and all medications, co-pays, and expenses that come with hospital admissions. My hope is to have this machine for Aubry as soon as possible. Thank you so incredibly much for taking your time to read a bit about our journey and if you’re not in a position to help, please feel free to share this in hopes of raising the funds to get this machine for my sweet Aubry.
This has been weighing heavy on my heart for a while now, and I feel like I have finally reached a point where I’m ready to ask for help.
As most of you know by now, Aubry has quite the medical diagnosis list and has been through quite a bit in her short 5 years of life. Between a divorce, 14 surgeries and countless hospitalizations due to her rare medical condition, we’re at a crossroad now. With Aubry in her last year of preschool I’m preparing to start the IEP/504 process for school but with the severity of her Ciliary Dysfunction, her medical team and myself are genuinely stumped on the logistics of this. 2018 has been much healthier for Aubry despite 3 surgeries in the month of January. We went on our Make-A-Wish trip at the end of January which showed us how nice it is to enjoy something so magical and stress free despite the medical equipment needed to be taken with us. When we went on this trip, Make-A-Wish rented us a Portable Oxygen Concentrator which is FAA certified meaning Aubry was able to use this anywhere. It was really quiet, it was easy to cart around with us and most of all it made our lives so much easier between everything else we deal with on a daily basis. Unfortunately when we returned from our trip, we had to return the device. Aubry currently has a HUGE oxygen concentrator with the option to fill our own ‘portable’ oxygen tanks which when being used only last a few hours and limits us so incredibly much. These same tanks take upwards of 3 hours to refill. This concentrator not only takes up a decent amount of space, but it is incredibly loud, it makes whatever room it is in extremely hot and it is just not working well for us. September of this year after a series of clinical visits, we saw Aubry’s aerodigestive team where I signed surgery number 15 consent forms for January 2019 but this surgery was all contingent upon a sleep study, a swallow study and a complete abdominal ultrasound all of which we have now completed. Fast forward to the end of November and Aubry’s team finally has those results which they had expedited. Just this last week after spending the day at Stanford with our Pulmonary/Cystic Fibrosis and Sleep Medicine doctor our next options are, a Cardiac Cath where we would look deeper into Aubry’s form of a Congenital Heart Defect and Ciliary Dysfunction. Aubry’s team would specifically be looking more in depth into Pulmonary Vascular Disease and depending on those results they would consider a lung biopsy. Basically, Aubry’s body cannot maintain normal oxygen levels, and her team is trying to figure out why. Not that any of this is easy to process or deal with but the main issue were running into now is that fact that Aubry’s team feels as if a Portable Oxygen Concentrator would be more beneficial and useful for Aubry long term. Aubry’s team sent the referral for this to insurance but warned me ahead of time that insurance most likely wouldn’t cover the cost of this machine because Aubry is not 14 years old. Just this week I got the call from our Durable Medical Supply company saying our insurance would not cover the cost of the device and our only option going forward is to purchase this machine out of pocket. Sure, no big deal, right?
I’m often times asked if I need any help, and my answer is always no, or “keep us in your prayers.” After thinking and praying about this for long enough I feel like I’m ready to accept any and all help that I can get as a single mom and Aubry's sole caretaker to relieve some of the financial stress for outright purchasing this Portable Oxygen Concentrator. The company that we are working with, is going to give us the best possible price on this given our situation. The owner Todd had me in tears when he first reached out to me. This will include a lifetime warranty, extra batteries and just so much peace of mind all around (which I’ve learned through this whole medical journey, peace of mind is SO incredibly important.) This Portable Oxygen Concentrator is also something that Aubry will be able to carry with her to school if needed, run her medicines through it if we are out and about and so much more ‘freedom.’
All in all, this medical journey has not been easy for me, let alone asking for help. It has taken some time to compose my thoughts and feelings to even get to this point. If we get more funds than asking for, they will be used for our insurance deductible which will be met just 4 days into 2019, as well as any and all medications, co-pays, and expenses that come with hospital admissions. My hope is to have this machine for Aubry as soon as possible. Thank you so incredibly much for taking your time to read a bit about our journey and if you’re not in a position to help, please feel free to share this in hopes of raising the funds to get this machine for my sweet Aubry.
Organizer
Kaytee Fair
Organizer
San Jose, CA
