Episode 59: Sky Full Of Stars: Battling Murphy's Law in the Special Needs World With Guest Meg Apperson
In this episode, we discuss coping with life when everything that could go wrong, does go wrong. Guest Meg Apperson's daughter Avery was diagnosed with craniosynostosis during the latter part of Meg's pregnancy. They initially thought Meg had placenta previa and found this condition instead. Avery's skull was measuring several weeks behind the measurements of the rest of her body. Meg knew something was very wrong, although the nurse and doctor disagreed. They allowed her to see a specialist, who agreed with Meg that her daughter's condition was serious. After a few more tests, doctors found out that her daughter's condition was more severe than they had originally thought. This meant that not only was the skull and brain affected by this condition, but everything surrounding it could be as well. There could also be abnormalities in other areas of the body.
In order to prepare for Avery's birth, Meg did a ton of research. She wanted to be prepared for anything that she might experience after Avery was born. The unknowns started with the birth, as she and the doctors weren't sure what the safest type of birth would be for Avery. From the beginning, Meg listened to her intuition. With labor, she only had one contraction and came to the hospital, and two hours later, Avery was born. Had she not gone in when she did, her placental abruption would not have been found. Once Avery was born, there were so many unknowns as to what would work for treatment and what kinds of impairments she might have.
From the beginning, Avery had respiratory difficulties, so Meg only had a few short moments with Avery. Shortly after, Avery was transported to a hospital with a better-equipped NICU. Avery was in the NICU for 6 weeks before she went home. Avery made it 3 days at home before she decompensated and needed another NICU stay. She was home for another 10 days before she had to go back to the hospital. She required a g-tube early on, and a trach not too long after. Complications in the first year included hydrocephalus, feeding issues, respiratory failure, staph in her trach, eye problems, shunt malfunctions leading to a coma, and septic shock. She underwent cranial vault remodeling and other various cranial and brain surgeries. Doctors also found a Chiari Malformation. She coded frequently and required a ventilator. It was a long and painful ride for her and her family.
During every admission, doctors hemmed and hawed about what to do and there was never a consensus about anything. Doctors would never commit to causes or treatments of any complication. Doctors kept trying to delay treatments and surgeries, to the extreme detriment of Avery. Numerous times, she became more ill due to the inaction of the doctor. Due to this, poor Avery had numerous additional complications that never should have occurred. In order to save Avery's life, Meg stuck up for Avery and advocated very heavily for the care she felt Avery required to live. To add to all of this, while Avery was still sick, Meg found out that her son Macson had a serious heart defect and needed almost immediate surgery.
Meg found advocating for Avery very difficult at first because she dislikes confrontation. Over time, she learned to trust her instincts and she had done enough research to know she could stand up for her daughter. The more times she was right, the more confident she became. Meg has become an unbelievable and inspiring advocate for her daughter and through this, she has saved her daughter's life many times. Meg recommends doing research about your child's condition and ask every question you have. Write it down and ask all the questions, write the answers down, and ask doctors to clarify if you don't understand.
For Meg to cope, she wanted to research everything and get all the information she could, in order to advocate for Avery. Writing and blogging were also very cathartic for her. Facebook groups for Avery's conditions were helpful for learning information and gaining a community. Seeing pictures of other kids with similar conditions also helped, as she could see that there were happy times in the future.
Over the years, her coping strategies have changed. She tends to go with the flow, have faith, and let minor concerns go. Meg kept trying to go at a crazy pace, but her body started to protest. Meg had been running on adrenaline, but after a while, her body couldn't do it. To take care of herself, she gets lots of sleep, uses good sleep hygiene, does a lot of writing, has stopped drinking coffee, and uses positive self-talk.
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
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