"How We Spent Our Winter Vacation" an essay by the family!! hahaha!!!
I'll back track a bit in a little more detail as I begin this post. On the Friday before New Year's Eve, Claudia, dad and I brought mom to the ENT (Ear Nose Throat Doctor). She went there to have the stoma (hole in her neck) checked. I'll talk about the "transportation challenge" first!
Let me say also that it is no easy task to get mom in and out of the car. Up until yesterday, when dad was finally able to buy a new car and get rid of his van, dad had to borrow Anthony and Con's car in order to take mom anywhere. The van was too high up, making the seats also too high up for mom to get onto. Mom barely walks now so she needs to use a car that has seats lower to or near her hip area in order to slide over from the wheelchair to a standing position while holding onto the car door at the point of the open window, and then pivot (with or without, mostly with) assistance. All this happens with a 3 man team, though dad and I or dad and Claudia have been able to accomplish the shift from wheelchair to car and vice versa with just a 2 man team, but it's difficult at best.
With the 3 man team, the passenger car door is opened along with its window. Then, one person stands behind the wheelchair and grabs the top of mom's pants in order to potentially assist in her standing from the chair, this person also has the job of strategically pulling the wheelchair out from under and away from mom when she stands. Mom holds onto the car door through its open window as a support to stand. This happens while another person (person #2) stands to the side of mom or slightly in front of her (usually this is dad or Claudia). This person (#2) positions mom's feet correctly on the pavement in front of her so that she can stand in a balanced and well self-supported manner. Person #2 also then assists mom in supporting her stand position and then helps her to either pivot or swings her into the car on the seat. The 3rd person enters the car from the driver's side and lays across the driver and passenger seats, in order to either grab mom's arm under the armpit or the back of her pants, in order to pull her into the car and onto the passenger side seat better. The person in dad's position now has the job of positioning mom's feet correctly on the driveway before her so that she can grasp the overhead handle and shimmy herself into the car. At this point, the person manning the wheelchair is done in the 3 person team situation. However, in the 2 person team situation, the wheelchair person doubles over to the person who lays across the seat's position.
OK...we're finally in the car!! Back to the ENT (Ear Nose Throat Doctor) appointment for the stoma. The doctor checked mom's ears and irrigated them (put a huge, plastic bib around mom and Claudia held a small bowl under mom's ear while I held her hands and talked to her to distract her as the doctor ran a syringe-like tool that shoots water from it into each of mom's ears). Mom had wax plugs in each ear (literally wax build up that solidified into a plug)---no wonder she had difficulty hearing even with her hearing aids!!
Once the irrigation was done, the doctor examined the stoma. The doctor said, as Claudia said all along, the stoma has NOT closed at all. The doctor appeared shocked at hearing how long mom was on a vent, and said that the stoma would NEVER close on its own. Remember, many other professionals (not ENTs), told us that the stoma WOULD close on its own. The specialist knows best (ENT). The ENT checked out mom's vocal chords and wind pipe and larynx next. To this, mom had to be "scoped." This meant that the doctor (after trying without it first) numbed mom's nostril with a numbing solution on a huge, long cotton ball (that was inserted into her nose). [Aside, mom's nose runs non-stop since she is home. She needs tissues all the time. Claudia and I have made a fun joke of it the way we did when mom kept asking for her 'blue make up bag.' I tell mom I am going to send her to a tissue users support group: OTUA or Over Tissue Users Anonymous and she laughs.] But I said all that to say that mom's nose is HIGHLY sensitive, as are ALL her senses since the shunt went in...so this procedure bothered her greatly.
After the numbing procedure, Claudia stood on one side of mom, and I on the other. Each of us had to hold mom's hands down and talk to her or sing to her to distract her from the 'scoping' which involved having a small, thin tube, with a scope/camera of sorts in it, inserted into mom's numbed nostril and down into her throat so that the ENT could view her larynx, wind pipe and vocal chords. The larynx and vocal chords looked fine--PTL!! But a cat scan was needed in order to view the wind pipe better. The whole procedure took about a minute or under. Mom was like a child --- who wouldn't be?? She gagged and yelled and wiggled to get free while the scoping took place. Luckily, there was an x-ray lab down the hall and we got the cat scan after a short wait....but that was yet another adventure.
For the Cat scan, Claudia and I had to get mom from the wheelchair onto that thin, long board-like table and then hold her tightly to support her as the table was raised for the scan. We had to wear lead vests and continue to hold mom AND to keep her still (remember that she tremors when she is anxious or tired...) while the scan was taken. We reversed the process at the end and succeeded!! Amen. but.....mom needed to use the bathroom......
Another adventure. The bathroom was small (I found out last week that it actually was palatial compared to the pint-sized one at the pre-op center). Mom, the wheelchair, Claudia and I all crammed into the tiny bathroom in order to assist mom. Though most "handicapped accessible" bathrooms have bars on the walls (whoopee---like that alone makes it accessible??!!), the toilets are practically at floor level!!! Who designs these things??!!! How do they pass inspection???!!
ENT wrap up: Mom will go for a surgical procedure to close the stoma and the surrounding area some time in February or early March (we have to space the procedures apart so there is no side effects from the anesthesia). The procedure will last about 45 minutes to an hour in total and will require general anesthesia and a hospital stay overnight just to be safe.
Mom and dad celebrated New Year's Eve together with various visits from our family members throughout the day. The whole family went to our favorite restaurant on New Year's Day for dinner and that was followed by a traditional family ball game in mom and dad's yard!! Depending on the season, a coinciding ball game is played by all family members young and old alike (Dad is the oldest at 79). This time, given the season, we all played FOOTBALL!!! It was a lot of laughs and dad spilled to the ground while running with a pass (he was fine!!) and everyone laughed and laughed!!
On Tuesday of this last week (after New Year's Day), dad and I took mom to her pre-op testing for the lithroscopy (??) or blasting of her kidney stone which is happening on Monday, January 16 at a highly competent but distant (45 minutes away at least) hospital. While driving in the car, mom kept trying to identify the towns we were in and she also read the signs on the road (have you ever seen the movie, "Forget Paris" with Deborah Winger and Billy Crystal???....). Mom recognized some towns and also kept trying to guess which direction we were driving in saying, "Are we going south now?" She was always 180 degrees off in her direction.
Mom did well during the pre-op testing. However, the only mishaps there involved a technician who kept telling me to keep mom perfectly still for the EKG-- ????? and how do I do that?? She tremors......I did my best by holding her head and shoulders still with my hands!! haha!! After an unsuccessful attempt, we tried again, but only to find out that the technician had the wires in the wrong place and had to try a 3rd attempt!! Oh boy....hahaha! The technician also handed me a tiny, lidded, plastic jar and told me to bring mom to the bathroom so that she could give me a urine sample...?????!!!!!! And how do I do that using only a tiny jar??? Picture the possibilities.......!!!!! The technician finally conceded and gave us a tray to hang on the toilet and collect the urine from there. Gee whiz. The bathroom there was miniscule!!!! Dad, mom, the wheelchair and I all crammed into the bathroom together---after I had to remove the garbage pail from the room!!! We barely got the door closed!!! Literally!!
The physical therapist came in the morning on Tuesday before the pre-op testing. Mom did AWESOME!!! She stood practically alone!! She took steps with the walker, and she transferred really smoothly and really alone (with only the walker) from the chair to the wheelchair and back. She side stepped!! She pivoted!! Up until that day, mom had no motivation or ambition to work hard in therapy or with us. It seemed like mom's brain took about 4 weeks to begin to reintegrate itself to the environment of home. Mom always knew where she was, but had difficulty carrying over all the skills she had when she was in the rehab facility. She regressed terribly. This is partially our fault because we aren't keeping up the grueling work we did with her in the rehab facility. Most of us just visit with her now....love on her...hang out with her at home...and we forget that she still needs to work hard in order to improve. We do still work with her---Anthony does physical therapy with her, Claudia and I work on cognition, Jean also comes several times a week to be with mom while dad goes out and Jean works with her too. BUT...mom also tells us she doesn't want to or can't do what we want her to do physically too! She also gets a natural work out getting dressed and using the toilet or getting in and out of bed at home too. We all need to balance and reintegrate the work with the 'hanging out' times now that mom is home. I will write more about mom's cognitive skills tomorrow.
The physical therapist told me, on Tuesday, that mom had plateaued in her work (wasn't making progress or enough of it) and therefore would not be continuing services with mom. However, mom did well---fabulously the Thursday before New Year's and on Tuesday and, if mom did well again on Friday, services would continue. If not, then services would cease for now. The physical therapist told mom that she was finally working hard---the therapist felt that, prior to Thursday/Tuesday, mom would quit working when the 'going got tough.' The therapist explained that we could call the agency for a re-evaluation any time we feel that mom has improved and services may/may not continue after another evaluation---but this is in 2-3-4 weeks from now. The therapist stressed the ultimate importance of our family continuing to work with mom in a scheduled fashion in order for her to improve.
We all see mom a lot now that she is home. Anthony, Con and the kids come over or call (Sammy loves to talk to Nonny on the phone!!), Claudia and her family visit often, Terry lives with mom and dad, and I come to help out during the week. We all try our best to relieve dad so that he doesn't go stir crazy in the house all day. Lenny also drops in when he can (he and I live the farthest away now!).
I also found out that Medicare has hired people to do retrospective audits on services. This means that people who received services 1, 2, 3 years ago are being audited to see if the services were helping or not. In many instances, Medicare is making a case to say that the services were provided needlessly and then Medicare collects $$$$ BACK from service provider agencies!! Agencies can go out of business because of this--causing a shortage of service providers. How do people get the help they need???!!! Especially those with a head injury!!!???? Progress for stroke and head injury patients is generally a slow, variable progression..... And...none of the therapists use VISUAL SUPPORTS/AIDS which are VITAL to recovery!! Claudia and I made many that we use with mom (and her aids). I will write about the visual supports we made tomorrow.
Long story short: the occupational and physical therapists dropped mom's services after 4 weeks. Friday was her last day of service. Mom took the news very hard and can't stop crying (literally) since Friday. When I saw her Friday night, she kept saying, "I can't believe they left me..." and sobbing. She couldn't be consoled at all yesterday by Anthony, Con, Anthony Michael, Sam, Claudia, Terry, Ava....by no one. Dad is very, very discouraged by the drop of services too. Dare I say that I knew this would happen? It's healthcare system. Some of the guidelines are necessary for sure...but others just don't make sense....it's complicated to say the least. On the bright side, up until Friday, mom had turned a corner....the integration was taking shape and you could see a change in her affect and abilities. She just needs to either cry herself out or to stop crying and focus again on the positives. Please pray for mom's continued progress...your prayers count so much. Also, please pray for perseverance, endurance, and stamina but with joy in the journey for mom and dad. As always thanks........
I will continue again to write tomorrow.
"And we know that all things work together for good to those who love God and are called according to His purpose." Romans 8:28
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