News from Lansdowne
By Brother John
Ah yes, now… now I’m starting to feel a tiny bit of holiday spirit! Lansdowne recently received her first snow of the season! It’s at times like this that I really enjoy having a huge picture window overlooking my front yard. I can stand there for long periods of time, watching the birds feeding, the squirrels playing, rabbits hopping around… it’s a magical winter wonderland! Kathy and I often call this view, “The Nature Channel”. (Perhaps we watch too much TV). 
But our kitties enjoy it even more! (When they can keep their sleepy eyes open that is). To them, our picture window is way better than plain old TV! Pictured to the right is the “Cat Chair”.
Every cat we’ve ever served has loved that chair! I must admit that I too enjoy sitting on it at night to do a little reading. Sarah Jane wraps her body around my neck and purrs and purrs. The warmth of her body and the vibration from her purring is one of the best natural massages to be found!
Sister Eydie mentioned that Kathy and I had been in the hospital. Kathy has Muscular Dystrophy and had quite suddenly developed difficulty breathing. It was so sudden, in fact, that we actually became trapped in our own house! We have a machine that assists Kathy’s breathing at night, allowing her to breathe on her own during the day. But suddenly she was actually using that machine for total life support. Fortunately, I provided our home with a powerful generator capable of running the entire house should we lose power from the local grid. So we were fairly safe in our house, and we had some backup to her breathing equipment which made us safer still. As a programmer, I have the ability to work from home, and we found ourselves unable to leave the safety of our home.
It took quite a bit of ingenuity on our part to try to do something about our dilemma, but I eventually worked out a plan with the private Ambulance company (STAT Medical Transport). We managed to get Kathy into the Emergency Department at our “favorite” hospital, The Hospital of the University of Pennsylvania (HUP). Nice hospital!!! We then moved from the Emergency Department into HUP’s Medical Intensive Care Unit (M.I.C.U.), (primarily because Kathy was considered to be on life support at that time).
It was in the M.I.C.U. that we discovered Kathy had about nine pounds of fluid pressing on her lungs which make it impossible for her to breathe on her own without mechanical assistance. The fluid was being caused by a defect in her heart known as Diastolic Dysfunction. We managed to get the extra fluid out of Kathy during our stay in the M.I.C.U., but we also learned another thing.
During the night, each and every night, Kathy’s blood pressure would suddenly drop out from under her. It would become so dangerously low, that it set off alarms on the monitoring equipment attached to her. This also could have been a contributing factor to her extra fluid in that during the night, her kidney’s were not receiving proper blood flow. Limited blood meant limited oxygen. Limited oxygen meant improper functioning kidney’s and even damage to Kathy’s organs.
So we began a complicated “game” of finding the best way to prevent Kathy from building up fluid, combined with the best way to have her blood pressure under proper control during the night. Our insurance company could see that this could possibly take some time, time they didn’t want Kathy to be spending in an expensive M.I.C.U. So they shipped us both out of our favored hospital and into an unknown Long Term Care facility (L.T.A.C.).
At the L.T.A.C., our goals were three:
- Figure out the exact amount of diuretics Kathy required to assist her in keeping off the extra fluids without also causing damage to her kidneys.
- Figure out the exact amount of blood pressure medication it would take, to maintain her higher blood pressure during the day, yet wear off in time for sleep so that it wouldn’t drop critically low.
- With the fluid off, retrain Kathy’s lungs and muscles to permit her to wean herself from daytime assisted mechanical breathing devices.
We nicely accomplished the first two simply because we were almost at that point anyway by the end of our stay at the M.I.C.U. Our hope was that the L.T.A.C. would have intelligent techniques to teach Kathy how to wean herself from what had become total life support. We were sorely disappointed. I won’t go into the details of what Kathy endured at the L.T.A.C. other then to say she wouldn’t be with us today had I not been constantly by her side.
Bottom line was I got her out of there with great haste.
We got Kathy a portable non-invasive ventilator. My dad rigged up an attachment that holds a mouth piece near Kathy’s mouth. When she wants air, she causes her chair to recline (in a forward direction) until the mouth piece enters her mouth. She takes in as much air as she needs. Then she reclines the chair away from the mouth piece and breathes on her own. Using this technique, she is spending less and less time seeking the assisted breaths, and is doing more of the work on her own.
I’m happy to report that she continues to breathe on her own more and more each day. All because of the non-invasive portable vent. And we can finally get out of the house! Yay!
I’m not so happy to report another thing. Our insurance company has so far denied covering the cost of the expensive non-invasive portable vent. They have gone against the prescription and order of her physician. We have initiated what is known as a physician to physician appeal.
And I’m even unhappier to report something that just came to me via a received phone call. Evidently the physician to physician appeal was rejected by the insurance company. We will have to give back the non-invasive ventilator on Friday or Monday. Kathy’s bummed.
Since I hate ending things on a sour note, let’s just say I ended this one on a fatty one. Yes, I went to Walt’s Philly Style Cheese Steaks (the best in Delaware County!!!) and I treated myself to a heart attack on a plate! Yum! I ate the best mushroom cheese steak I’ve ever had (well… since the last time I ate at Walt’s that is 🙂 ). And they have these delicious crunchy onion Rings that are just to die for! I washed it all down with a giant fountain Coke and man… I was in heaven (or would soon be).
Walking into Walt’s is like stepping back in time. Everything is colorful and quaint and has the feel of days gone by. Much of the art is antique and classic. The service is fast and friendly and the prices are quite reasonable. You won’t go home hungry! As I sat at one of the small square tables, I found myself near several groups of friendly customers who were all having a great time. Even though I was by myself, I found myself smiling often, somehow becoming a part of the shared community. All in all, it was a great way to end out the day (and my low sodium diet).
A visit with Brother John!
By Eydie Wight
Like I said, Sammy and I were having a really good weekend. On Sunday, we decided to drive down to Lansdowne to visit Brother John and Kathy. My parents were going to be there and the menu was BLT’s with fresh homegrown garden tomatoes, fresh homegrown corn on the cob, and fresh homegrown peaches for dessert. Our dad has the Midas touch, the ultimate green thumb of gardening. It’s like gardening is a religion and he is the high priest. Each year he brings us buckets and small cartloads of fresh fruit and veggies. Both Brother John and Kathy, and Sammy and I strongly believe that it is the deepest sacrilege to let any of this bounty go to waste. (In fact, Brother John wrote his first, and only poem about just that very thing! Check it out in our Poetry Section). And since I have my own albeit less than worthy garden, we’ve learned to improvise. In true Bubba Gump fashion I make fried squash, squash in salads, squash casserole, squash pancakes, squash bread, squash pickles, canned squash, squash soup, squash and broccoli in cheese sauce. I’ve been known to lie awake in panic thinking I should get up and go eat a raw squash just to reduce the sheer numbers needing consumption.
Well, shortly after we arrived, Dad, Sammy and I started husking corn. Now my Mom has the deepest of aversions to even the tiniest scrap of corn silk. So we sat outside in the warm (freaking hot) sun talking (and sweating) about gardening, the corn crop of Sammy and I that was beautiful and bountiful and inedible because the the sewage leak, and picked the corn silk off a dozen or so ears for about an hour. Then Dad started cooking bacon while Mom and I cut and peeled tomatoes (another ick for my mom, tomato skin), and cut up lettuce. Sammy peeled the peaches (naked fruit is popular in my family.) We kept trying to get Dad to let someone take over the bacon while he sat down (he’s headed for a knee replacement in a few weeks) but, no one, repeat no one, can cook perfect bacon like Dad. We didn’t argue with him too much because we all know that, no one, repeat no one, can cook perfect bacon like Dad.
After we ate to the explosion point (I did go light on the corn at only four ears smothered with butter and salted like the briny sea) and cleaned up the dishes, I wandered over to the music cases and got out the mandolin. I picked out a few tunes while Brother John opened up Sammy’s guitar case. Sammy was already deep in a postprandial nap sitting up on the couch with his head thrown back, five seconds away from the rumbling snores that accompany his Bipap-less sleeps. Dad was on the big chair with that glazed look in his eyes that said a nap was ambling in his direction. Brother John started poking Sammy in the stomach with the guitar, poking harder and harder until Sammy finally stirred with a “I don’t want to go to work, ten more minutes.” I made the mistake of getting up to pee and lost the mandolin to John’s possession is nine tenths… I hadn’t brought the fiddle this time so I had to sing. We don’t get together very often so we do more pickin’ (trying to find a good key) and grinnin’ (oops, not that key) than tuneful artistry. I always had the reputation of only being able to carry a tune if I had a stout bucket, and only having a maybe one octave range on a good day, but Mom sang in a barbershop quartet for years and Brother John and Sammy are no strangers to a melody so we get the job done. We played and sang our grandfather’s usual tunes (Redwing, Old Joe Clark, Sourwood Mountain, and You Are My Sunshine) and Wildwood Flower, and some old hymns like I’ll Fly Away and Swing Low. My mom stole the harmony parts which I usually sing so I was haphazardly doing lead. I hate being Captain Kirk, I want to be Mr. Spock. But it was fun. Mom and Dad left and we picked around some Celtic tunes I like (House Carpenter, Star of the County Down, Sweet Afton) and then it was time for us to go. We discussed the proposed mead adventure standing by our car outside in the beautiful evening air while the mosquitoes treated Sammy like my Dad’s fresh garden produce and then started for home.
The Adventures of Eydie and Sammy Wight 