Help Sam Wharton
After a cancer scare and and emergency craniotomy, Sam was diagnosed with cavernous angioma, a heritable condition that causes an overgrowth of small, tangled veins in the liver and brain. As frightening as the diagnosis was, we were thrilled when cancer and infection were ruled out.
Sam's brain lesions bled, causing serious and life-threatening symptoms. The frontal lobe lesion was removed during brain surgery, but the remaining lesions continue to cause significant and potentially deadly affects. The brain stem lesion is no longer bleeding but it is surrounded by blood, putting pressure on a part of the brain that controls basic functions like heart beat and breathe.
We found out the hard way that recovery from a brain injury is not a straight path. After returning home to my care, Sam suffered from many setbacks. He had severe insomnia. His motor skills, speech and swallowing deteriorated. His blood pressure skyrocketed and he aspirated food and drinks. It was and is unclear how much of this is due to surgery complications and how much is simply the result of a large mass on is brain stem.
On September 26th, while resting in bed with our little boys, Sam had a small seizure and stopped breathing. My sister-in-law Leyli and I did CPR. Sam was rushed to the hospital and put on life-support.
Today Sam is in the ICU. He has a brand new tracheostomy. It is possible that his brain stem will heal enough that he will breathe on his own again.
Some sufferers of brain stem angiomas recover fully. Others do not. We are in a painful place, waiting and hoping for the best outcome.
With the help of friends and family and even some people I have never met, we are managing constant care for Sam and for the kids. However, even with health insurance, the medical expenses will be significant. Additionally, Sam's family medical leave is limited and once it runs out, we will be without income.
Thank you so much to everyone who is helping us through this difficult time.
The absence of seizures has shown us exactly what Sam is capable of when he is not facing the added challenge of seizure side affects, and the picture is very good. He may have a few more temporary setbacks with an upcoming medication change, but it looks like his deep brain swelling has subsided.
Lots of time with friends and his guitar has helped Sam get back on his feet.
You may have noticed that our donation goal has changed. We are hopeful that Sam will be back on the job soon after his PTO runs out. We have payed back medical debts to friends and family members, and we feel fairly confident that our remaining medical debt will not interfere with our ability to obtain continuing care for Sam and the kids. One of our biggest fears has been defaulting on medical debt with Sam's specialists. So far we are in good standing. With crises passed or averted, we finally feel we can safely shoulder our own financial burden and still obtain necessary care.
Many, many heartfelt thanks to those who made sure that we all got through this crisis. You kept our family safe and we are very grateful.
The next step is becoming a two income family again. I was in the middle of a job search when Sam became sick. Hopefully I will be able to find time to work later in the winter or spring. Sam's ability to shoulder both work and home obligations will determine my ability to work outside the home.
My income is needed to pay school tuition. All three kids are very happy in school, and we strongly hope to give them the stability of returning to the same school next year. They have had enough changes at home recently. Hopefully I will find a way to make up for lost time.
We had a few ER trips to deal with a G tube infection and to get a new brain scan. Preliminary CT results don't show any new bleeds. His seizure meds have been adjusted and he is regaining balance and motor skills.
Right now the assumption is that deep brain swelling continues to cause the seizures. Hopefully the seizures will stop when he is healed from surgery. The most recent incision is less swollen every day, and we are hoping his brain stem swelling is decreasing as well.
In the next few weeks, as swelling subsides and Sam weans off of all his pain medications (and hopefully seizure meds) we are hoping for a more clear indication of when Sam will regain basic skills and return to work.
After a very hopeful conversation with our insurance company, I have become very familiar with the weird world of "not covered" medical expenses. Until recently, it looked like most of Sam's hospital stay (after our large out-of-pocket max) was covered. Now bills are rolling in for things like room and board and other unavoidable expenses that somehow are not covered by insurance.
If anyone has experience or advice about how to proceed with challenging health insurance payouts, please reach out. It looks like we will be facing a protracted fight to avoid paying extensive medical bills.
Because Sam had no swallow reflex when he was moved out o the ICU, he was not expected to be able to eat normally for about 6 months. After pushing for a new barium swallow study, he was given the okay to eat normal meals right away. We patiently waiting until is G tube can be removed.
Sam's vocal ability is returning. After the trauma of intubation and a trach, his vocal cords have a lot of healing to do, so he is very quiet and can't speak for very long. He sounds more like himself every day.
We came home on with a walker, cane, and orders for a wheel chair. Yesterday, Sam was able to go to the park with me and the kids. He walked along the sidewalk, down steps and across the playground with only his safety belt and my arm.
Sam is progressing quickly toward a full recovery.
With the generous help of friends and strangers, fundraising has provided us with much-needed financial support. In addition to funds raised on this site, Whole Foods employee contributions from the regional Team Member Emergency Fund were granted to us, and two weeks of out hotel stay in Phoenix was covered by Whole Foods. The Steep Canyon Rangers put on a medical benefit, and many others organized and contributed to a silent auction.
We used the funds for the medivac flight, for travel to and from Phoenix, and for a hotel room and living expenses there for me and the kids. This allowed me to participate in Sam's rehab and learn how to care for him at home. We will also use donated funds to cover our out-of-pocket medical expenses, which total just under $10,000 annually, as well as for in-home medical supplies, a daytime caregiver for a few weeks, and to cover lost wages for me. I had to quit the farmer's market for the remainder of the season, and I am unable to work part-time as we had planned.
In the even that there are funds remaining after those expenses, we will use them for the insurance out-of-pocket for the coming calendar year and for lost wages if Sam is unable to return to work.
Fingers crossed that Sam will return to work in February and I will be able to work then as well! It looks like he is very much in track to return to work on schedule.
We are missing our big girl Nilah, who is back home in Asheville still. We are all so glad that the whole family will be together soon.
Wish us luck flying home with two preschoolers and a wheel chair!
Many thanks for all the love, support and donations. This scary ride would have been much harder without all the support.
I would love to have an update when you get the chance.
Benefit at Isis Music Hall in Asheville on Tues. Oct. 21 at 7:30 pm featuring the Steep Canyon Rangers and the Darren Nicholson Band. To get your tickets cut and paste this link: http://isisasheville.com/events/tuesday-bluegrass-sessions-35/
Asheville, the Steep Canyon Rangers are hosting a very special Tuesday Bluegrass Session to benefit Sam www.facebook.com/events/898633686814345
I had two lesions (AVM's) like Sam has rupture on my brain stem 10 years ago. The doctors had to wait a month before surgery because of the swelling. Dr. Newell is an amazing neurosurgeon in Seattle who removed my lesions, and also those of my mother and daughter, and we're all almost back to 100%. I wish you luck! It's a long and hard journey, you can do it!
Sam was a very dear friend of mine during his tenure with the Dixie Slam Mob. Although I haven't seen or spoken to him in years I think of him often and desperately hope that he is given the opportunity for recovery and healing. Many prayers for you, Maggie and your children and to you Sam. Thank you for being such a kind wonderful person.
Everyone at the Greenville Whole Foods is thinking of Sam. Will KEEP PRAYING for Sam's and his Family's well being and peace of mind. May God Bless Each of You!