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Nov 21, 2016 Latest post:
Oct 15, 2018
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Where do I start, I am Sherry's husband of 10 years, Keith. Before I met Sherry she had a benign brain tumor and had suffered from seizures for 6 or 7 years. When I met her the seizures were then under control and had been for sometime. The tumor affected her speech mainly and to some extent her memory. The medication caused her to need 1-2 hour naps daily, but she was still able to manage a full time job and had raised a family. In the summer of 2012 the tumor became active. A laser surgery was attempted, but was converted to conventional and much of the tumor was removed. Being the type tumor it was we were told it would grow back. The surgery, tumor, and aftermath caused more speech aphasia, and memory loss, but with speech, physical, and occupational therapy Sherry bounced back. She resumed working full time after 25 weeks of recovery. In the spring of 2016 the tumor was active again and April 26th, 2016 a second surgery was preformed, but brain swelling complicated recovery and caused more memory loss and worse aphasia. Surgery was followed by 5 weeks of radiation treatments, 5 days a week. Her last radiation treatment was July 15.
August 17 MRI 2016 Everything looked better than expected on the MRI. This was also when Sherry was told she would start feeling stronger and better; and that the hair loss she had was the extent of it. Things should be on the improve, but they were not. By mid September and Sherry had lost all of her hair on the left side of her head and her level of activity diminished drastically.
October 19th 2016 Another MRI was scheduled. It was good also, but Sherry's fatigue level was high. She fell that evening after a long day of appointments. She felt the worst she had felt to date and the fatigue was at its worst . Fortunately Sherry had no serious injury's from the fall and we started her in physical therapy and speech therapy.
Sherry fell 2 more times over the next 2 weeks, followed by more doctor appointments, blood work to check for anemia, and a tilt table test to check her blood pressure. No issues. Seems there is no simple fix for her falls. November 3rd 2016
Road trip to Virginia for Jesse's wedding. Was really worried things would go bad, but Sherry traveled well. No falls and no incidents, just a wonderful trip.
The second week of December Sherry fell 4 times that I knew about, the last time on December 17th she hit her head. She refused to go to the hospital that night. The next morning I insisted she go to emergency. AG did a CT scan and found swelling in her brain and her condition was diminishing. Sherry admitted to doctors that she had been falling and not telling me. A consult was done with Cleveland Clinic Main and arraignments were made to transfer her there for treatment. 4Mg of Decadron steroid was administered and Sherry started to respond. Soon she was getting up, out of bed without assistance and had to have alarms on her bed and chair for movement.
December 22nd Sherry was transferred to Edwin Shaw for intense Physical, Speech, and Occupational Therapy. Christmas and New Years was spent at Edwin Shaw.
Against my objections and because of insurance coverage Sherry was discharged from Edwin Shaw January 4th. The day before discharge Sherry fell in her room and could not get up, but it didn't matter insurance discharged her. Home care from AGVNS was set up to start the next day. Sherry did home OT, Pt, and Speech until the 24th. She was getting around better now, could climb the stairs, and venture outdoors. We also started to taper off the decadron steroid.
Feburary 7th 2017 we started outpatient PT,OT,and Speech at Edwin Shaw White Pond Dr. At this same time we reduced the steroid below 2mg. Sherry started to fall. Sherry fell 5 times in 3 weeks, but we didn't put it together with the steroid reduction. Things stabilized and Sherry stopped falling, but was not improving much with her speech and strength.
At this same time Sherry had her bi-yearly eye exam and there was a medical problem with her vision. We contacted CC and made an appointment for April 17th, the same day as her next MRI and visit with Dr. Peereboom. We continued therapy.
April 2017 appointment we discussed everything. MRI looked good, but Sherry was still having problems, falling and fatigue. The last thing we touched on was the steroid reduction and it hit home. Sherry does not do well on less than 2mg of decadron daily. Steroid was increase.
On may 2nd , 2017 we stopped PT, OT, and Speech, using ½ her allotted visits by the insurance coverage just in case there was a problem later in the year. We had started to supplement her therapy with a twice a week workout at Stewart's Caring Place. We aslo began to adjust the steroid again and Sherry started to fall again. 5 falls over May,June and July.
July 2017. MRI and appointments July 18th, again we discussed progress and determined we needed to bump the steroid back up to 2mg a day. Sherry responded well. She was more alert, woke earlier, got fatigued less and was able to do more things that had wore her out in the past. She also started to take on risky behavior. Sherry would carry her phone down the stairs, against my objections, only using one hand to hold on with.
August 6th, 2017.
Sherry felt so good she got up and we went to church for the first time this year. When we got home I stopped in the kitchen to look at something and do a couple choirs. Sherry went into the solarium, sat down, and took off her shoes. I thought she was going to read the paper. Next thing I heard was a hard hit on the floor above my head followed by a dull thud. I turned and looked, Sherry was not in the solarium. I knew immediately she had fell down the steps. She had attempted to carry her shoes, phone, and 3 pieces of clothing up the stairs. She had fell backwards head first down a half flight of stairs. I had just finished installing a $3500 stair lift chair that I was going to show Sherry how to use that day. Sherry was inverted with her feet on the fifth and sixth steps and her head lay bleeding on the foot rest of the stair lift. I called 911.
AKRON GENERAL WAS A NIGHTMARE
Akron Generals emergency staff had previously seen her in their emergency in December of 2016 for what was tumor related hydrocephalus. That same ER staff treated her. They never saw how much she had improved over the six months. They only saw and ASSUMED that this was Sherry's baseline. Because of confusion, by the time I saw Sherry her Aphasia had worsened (she couldn't put a sentence together) and she could hardly move her right arm and right leg. They ask me if this was her baseline and I said NO. (The last time they had seen her she exhibited the same symptoms as she was now.) I told them to no avail Sherry had almost full range of motion in her arm and could walk and climb stairs at home before the fall. I brought this to to their attention more than once. As we waited I questioned everyone that cared for her about the limited movement, that was getting worse, and reinforced my effort to get across to them that this was not normal.
They admitted her for rest and observation. Sherry was observed for three days durnig which they found 2 brain bleads and made a decision to transfer Sherry to Cleveland Clinic neurology H-62 at the main campus. The fall, was devastating. It left Sherry unable to walk, grip anything with her right hand, permanent balance problems, aphasia, memory loss and vision problems. Everything we have done from this point forward has been with the intent to improve Sherry's ability to live and communicate. Sadly the best we've been able to do it keep things the same.