Abbey's Airway Recovery & PTSD
Donation protected
Hi everyone! I, Jaclyn Wilhelm (one of Abbey's sisters), have created this page to help support Abbey Moseley and our family as they begin another long hurdle in Abbey's journey to a healthy airway.
Abbey came in to this world 15 weeks early fighting for her life. With lungs barely developed, she beat all the odds and was discharged from the NICU with a tracheotomy. Abbey wore her tracheotomy till about 4 years old. With the help of world reknown Dr. Cotton at Cincinnati Childrens Hospital, Abbey was finally able to get her trache out and live a pretty normal life with only semingly minor disabilities. She was a teeny, blond headed, fiery little girl who was BORN with crazy burning love for country music. As much of a normal life she lived, Abbey did face a lot of physical hurdles. It wasn't really until high school that we all realized how much she was struggling. You could see how hard she worked to breathe, and how exhausted she was by the end of every day. Just taking a breath to say something took every ounce of energy. During this time, she eventually was seen by Dr. Cotton again, and Abbey's airway was almost completely closed. Imagine a tiny coffee straw opening, or possibly smaller. That's what Abbey was breathing out of. She wasn't getting enough oxygyn to her brain, which explained a lot of things including her diffculties with school. It was clear she needed urgent surgery. In February of 2010, Dr. Cotton performed another surgery basically rebuilding Abbey's airway. The surgery was brutal, and a long, difficult recovery, but it was a success! Abbey finally had a pretty normalish airway and was able to breathe. She resumed her life and finished school. This past year, however, Abbey seemed acting more run down . She's been losing weight, she's been super exhausted, and struggling to breathe again. After seeing her doctors here in Dallas, everyone was in agreement to go see Dr. Cotton again. After a scope, she recieved devastating news. The bottom part of her airway has completely collapsed. The part of the airway that Dr. Cotton rebuilt in 2010 was still in tact, but the portion below had collapsed including her esophogus. Abbey needs urgent surgery again.
So here we are. She is scheduled for surgery this Thursday, October 13. Dr. Cotton is going to rebuild the bottom part of her airway, and basically reconstuct her esophogus. I can't even fathom how he does all of this. He truly is the ONLY person in the world who can do these surgeries. Abbey will most likely have a T-Tube (basically a temporary tracheotomy) in for about 6 weeks. She will have to re-learn how to swallow again. It's going to be a long recovery. She will probably be at Cincinnati Children's for the first 3 weeks after surgery, and then be able to come home for a few weeks. All of that said, not only will this be emotionally taxing on Abbey and my parent's espcially, it's also going to be costly paying for travel, temporary housing in Cincinnati, and various medical bills.
Please join us in praying for Abbey, for Dr. Cotton and his medical team, for Abbey's recovery, for emotional and physical strength for Abbey and my family, and if you feel led, please think about contributing a small financial donation to help with travel, temporary housing and medical bills. My parents would never ask of this on their own, but I know they could use the help, and I know there are a lot of you out there who would love to help. We would greatly appreciate it! More than anything, please pray for and encourage Abbey. Thank you all!!!
____________________________________________________________
(01/09/16 - Update)
Abbey's airway surgery was a success! She still has a temporary trache in (which will be removed soon), but everything is looking good. Dr. Cotton said it's the best airway she's ever had! Unfortunately though, Abbey can hardly experience its benefits because she has encountered another HUGE obstacle. Since Abbey's surgery, she encountered a new neurological issue that appears to be related to a rare anti-body that appeared in her bloodwork called Voltage Gate Potassium Channel (VGPC). It is most likely an auto-immune related encephalitis, but this is so rare, there is not alot of documentation on it, and we are shooting in the dark.
To sum up this story, in November, while Abbey was recovering from her airway surgery at home with her t-tube in, she started experiencing uncontrolled muscle spasms (on her birthday) and eventually was fully paralyzed to the point where she could only move her eyes. After 5 rounds of IVIG treatment, she started to see improvement and was discharged home with a walker right before Thanksgiving. Her original diagnosis was Guillain-Barre Syndrome, but her symptoms started to present differently than GBS. Over Thanksgiving break, she had another set-back and went completely paralyzed again and was re-admitted to the hospital and recovered again after a few days and was discharged. During this stay is when they got the blood-work back revealing the positive VGPC anti-body. This is a lead, but because it is so rare, we do not know what this means for Abbey...if it's short-term or long-term, what triggers the set-backs, etc. Abbey continues to struggle with ongoing severe nerve pain, muscle weakness (particularly on the left side), muscle stiffness, and off and on muscle spasms and paralysis, plus hypersensitivity when it comes to light and noise. We are looking for more answers to what the VGPC anti-body means for Abbey and her future. Currently (as of 01/09/17) Abbey is back in the hospital with another set back and is starting another round of IVIG treatment.
We have increased the funding goal since this journey has become much more extensive than we could have ever imagined. My parents did not ask for this, but the initial request didn't even cover out-of-network costs and the unpaid/partially paid time off my mother took to care for Abbey full-time. Now we add the numerous and lengthy hospital stays and transfers, ER visits, extensive testing, out patient therapy, etc.. Additionally, it's a new year with a new deductible and out-of-pocket max to meet. So with that said, any contribution would be a HUGE benefit to my parents and Abbey as well as prayers, words of encourgement, food, etc. They are all exhausted and seriously find strength through all of your continued prayers, support, encouragement, etc. We can't thank you enough!
Abbey came in to this world 15 weeks early fighting for her life. With lungs barely developed, she beat all the odds and was discharged from the NICU with a tracheotomy. Abbey wore her tracheotomy till about 4 years old. With the help of world reknown Dr. Cotton at Cincinnati Childrens Hospital, Abbey was finally able to get her trache out and live a pretty normal life with only semingly minor disabilities. She was a teeny, blond headed, fiery little girl who was BORN with crazy burning love for country music. As much of a normal life she lived, Abbey did face a lot of physical hurdles. It wasn't really until high school that we all realized how much she was struggling. You could see how hard she worked to breathe, and how exhausted she was by the end of every day. Just taking a breath to say something took every ounce of energy. During this time, she eventually was seen by Dr. Cotton again, and Abbey's airway was almost completely closed. Imagine a tiny coffee straw opening, or possibly smaller. That's what Abbey was breathing out of. She wasn't getting enough oxygyn to her brain, which explained a lot of things including her diffculties with school. It was clear she needed urgent surgery. In February of 2010, Dr. Cotton performed another surgery basically rebuilding Abbey's airway. The surgery was brutal, and a long, difficult recovery, but it was a success! Abbey finally had a pretty normalish airway and was able to breathe. She resumed her life and finished school. This past year, however, Abbey seemed acting more run down . She's been losing weight, she's been super exhausted, and struggling to breathe again. After seeing her doctors here in Dallas, everyone was in agreement to go see Dr. Cotton again. After a scope, she recieved devastating news. The bottom part of her airway has completely collapsed. The part of the airway that Dr. Cotton rebuilt in 2010 was still in tact, but the portion below had collapsed including her esophogus. Abbey needs urgent surgery again.
So here we are. She is scheduled for surgery this Thursday, October 13. Dr. Cotton is going to rebuild the bottom part of her airway, and basically reconstuct her esophogus. I can't even fathom how he does all of this. He truly is the ONLY person in the world who can do these surgeries. Abbey will most likely have a T-Tube (basically a temporary tracheotomy) in for about 6 weeks. She will have to re-learn how to swallow again. It's going to be a long recovery. She will probably be at Cincinnati Children's for the first 3 weeks after surgery, and then be able to come home for a few weeks. All of that said, not only will this be emotionally taxing on Abbey and my parent's espcially, it's also going to be costly paying for travel, temporary housing in Cincinnati, and various medical bills.
Please join us in praying for Abbey, for Dr. Cotton and his medical team, for Abbey's recovery, for emotional and physical strength for Abbey and my family, and if you feel led, please think about contributing a small financial donation to help with travel, temporary housing and medical bills. My parents would never ask of this on their own, but I know they could use the help, and I know there are a lot of you out there who would love to help. We would greatly appreciate it! More than anything, please pray for and encourage Abbey. Thank you all!!!
____________________________________________________________
(01/09/16 - Update)
Abbey's airway surgery was a success! She still has a temporary trache in (which will be removed soon), but everything is looking good. Dr. Cotton said it's the best airway she's ever had! Unfortunately though, Abbey can hardly experience its benefits because she has encountered another HUGE obstacle. Since Abbey's surgery, she encountered a new neurological issue that appears to be related to a rare anti-body that appeared in her bloodwork called Voltage Gate Potassium Channel (VGPC). It is most likely an auto-immune related encephalitis, but this is so rare, there is not alot of documentation on it, and we are shooting in the dark.
To sum up this story, in November, while Abbey was recovering from her airway surgery at home with her t-tube in, she started experiencing uncontrolled muscle spasms (on her birthday) and eventually was fully paralyzed to the point where she could only move her eyes. After 5 rounds of IVIG treatment, she started to see improvement and was discharged home with a walker right before Thanksgiving. Her original diagnosis was Guillain-Barre Syndrome, but her symptoms started to present differently than GBS. Over Thanksgiving break, she had another set-back and went completely paralyzed again and was re-admitted to the hospital and recovered again after a few days and was discharged. During this stay is when they got the blood-work back revealing the positive VGPC anti-body. This is a lead, but because it is so rare, we do not know what this means for Abbey...if it's short-term or long-term, what triggers the set-backs, etc. Abbey continues to struggle with ongoing severe nerve pain, muscle weakness (particularly on the left side), muscle stiffness, and off and on muscle spasms and paralysis, plus hypersensitivity when it comes to light and noise. We are looking for more answers to what the VGPC anti-body means for Abbey and her future. Currently (as of 01/09/17) Abbey is back in the hospital with another set back and is starting another round of IVIG treatment.
We have increased the funding goal since this journey has become much more extensive than we could have ever imagined. My parents did not ask for this, but the initial request didn't even cover out-of-network costs and the unpaid/partially paid time off my mother took to care for Abbey full-time. Now we add the numerous and lengthy hospital stays and transfers, ER visits, extensive testing, out patient therapy, etc.. Additionally, it's a new year with a new deductible and out-of-pocket max to meet. So with that said, any contribution would be a HUGE benefit to my parents and Abbey as well as prayers, words of encourgement, food, etc. They are all exhausted and seriously find strength through all of your continued prayers, support, encouragement, etc. We can't thank you enough!
Organizer and beneficiary
Jaclyn Wilhelm
Organizer
Flower Mound, TX
Cindy Moseley
Beneficiary
