I wanted to post an update as to what has developed with Emma and her health concerns. Emma was being seen by an ENT at Detroit Children's Hospital who suffered a medical emergency and was forced to retire early. Upon his departure and with Emma's need for a check up with an ENT, I found Chad Afman at Helen DeVos Children's Hospital in G.R. For history, Emma was told by her local ENT that her case was "beyond" local ENT's scope and she needed to be seen elsewhere. Upon completion of a scope two weeks ago with Dr. Afman, we discovered that she is not as stable as we thought. He informed me that she has several pertinent concerns that should be addressed very soon. Least of our worries (but new on the list) is bilateral conductive hearing loss due to repeated ear drum perforations. She has a "flap" of skin above her vocal cords which she is using as a false vocal cord enabling her to speak. The flap is occluding (blocking) her airway 95% closed when she inhales. It needs to be removed to allow her to breath freely, but it will also take away her ability to speak. Her vocal cords do not meet in the front as needed to make contact and one is paralyzed "open" making the likelihood of her speaking slim. She will need surgical intervention on 4 specific areas of her airway. She is a candidate for a donor trachea but with that procedure still experimental I am hoping to wait for that option further in the future.
We were informed that Dr. Rutter at Cincinnati Children's would be the best choice for treatment. I have always wanted her to see Dr. Cotton in Cincinnati and fought for her insurance to cover him but was informed we had to stay in network. Dr. Cotton is now getting close to retirement, Dr. Rutter is in his practice and according to Dr. Afman is a "prodigy" in the treatment of airways. I anticipate several trips to Cincinnati for short outpatient treatments and at least two stays in ICU after big surgeries. Insurance is going to cover him "in network" which is a huge blessing! Emma has a $2,000 deductible and 70% copay on surgeries. Mike's insurance at work is changing mid-term which stinks, but at least the "blues" (BCBSM) is going to consider him in network. I have applied for Children's Special Health Care Services which may cover some of Emma's expenses not covered by her insurance.
Being in Cincinnati is pragmatically difficult for us. Miss Ellie needs 24 hour care and is able to stay with my parents in their home. Mom is qualified to provide her with care but it is physically difficult for my Mom to care for Ellie. Ellie needs to be lifted and transferred and (no offense to her) my Mom is no spring chicken. Caring for Ellie is a big strain on her body, more specifically her back. She can tend to her needs but I will need to find help for Ellie's physical care to alleviate some strain on my Mom. The other two kids can stay at home or can stay with my parents during the day while Mike is at work. Mike can tend to all the needs of the home, property, and pets when he is home. I anticipate friends from church will provide meals. Mike and the kids can always go eat dinner with my folks. I will cook some freezer meals before I leave; I think Mike and the kids find comfort in "Mom's cooking" while I am gone. I will have to clear my schedule of all cakes and baking commitments.
I don't have any dates for surgery as of this moment, but anticipated hearing from the scheduler last week, so am anxious to get the call very soon. It is a 5 1/2 hour drive to Cincinnati. If Emma has an outpatient appointment it will be a long drive to do round trip in one day. We know a family that lives in Cincinnati and if needed can ask for a place to sleep for the night. I am hoping she won't have too many office visits, the hospital knows how difficult it is for families who live far away to accommodate short visits. I am not looking forward to the gas and expenses for these trips! Long term lodging should be inexpensive, there is a Ronald McDonald house at the hospital. The Detroit house charges $10 a night (according to the web it's $25 in Cinci). I have stayed at them several times before and none of those details worry me. As long as I have a change of clothes and a toothbrush I am "good to go".
Please keep my beautiful girl in your prayers. She is tough and is a fighter but no kid should be asked to endure as much as she has.
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