Becky's Take on her care

SUMMARY OF WHAT WENT WELL AND NOT SO WELL IN MY TREATMENT

I prepared the following lists of what went well and not so well in early July, and will have one of the kids post it now in August. Most of the blog is upbeat, and rightfully so, but there were also some things that didn’t go so well in my medical care, and I wanted to note them too. My kids have been wonderful in creating this blog, but of course what I was really seeing, feeling, experiencing was not necessarily captured in the February, March and April blog entries by the kids. These are in no particular order.

This may be helpful to the Oversight Committee and MHDD Commission as they plan and implement a consumer driven system of care in Iowa. This is my brief consumer report from my own experience. Note: Nothing in the system of care can replace what I get from my husband, children, extended family, and friends. They are there 24/7 to support me emotionally and in practical ways.

Things that worked well in system of care

1. Ankeny Emergency rescue top notch, saved my life
2. All Iowa Clinic doctors have basic info on one computer so don’t have to repeat upon referral, same x-rays.
3. Case manager is a nurse and can explain things, and is a wonderful supportive person as well.
4. Team meetings weekly in Mercy Hosp Rehab coordinated by the physicians assistant, attended by myself, my husband, the rehab doctor, speech therapist, occupational therapist, physical therapist, nurses, and workers comp financial people. This is how family team meetings are supposed to work.
5. Wonderful doctors in their specialties.
6. Wonderful decision by case manager to let Dr. Smith continue to coordinate care through April, May, June, and July before turning over to workers comp doc for evaluation
7. Wonderful occupational and physical therapists, all great conversationalists too.
8. Wonderful co-location of therapists with workers comp doc in West Des Moines.
9. Wonderful transportation service by WDM Human Services bus and their retiree drivers. THIS IS HUGELY IMPORTANT.
10. Wonderful rehab location at Mercy Capitol where all my work friends were close by and could drop in and see me.
11. Case manager went to all key doctor appointments with me, explained what docs were suggesting and kept track of scheduling.
12. On-call homecare nurse prompt, cosmetologist as well as wound care on a week-end.
13. Worker’s comp paid for all my medicals without fuss.
14. Worker’s comp paid me weekly salary.
15. Unanticipated empathy from nurse at MRI test who had been through wearing a halo.
16. Good advice from Cousin Jennifer who had been through similar accident, hospitalization, and rehab. Very comforting.

Things that did not work well in system of care

1. Nobody told me the nightmares from medication were normal. I thought all the strange goings on in my head in those first dark weeks were reality.
2. Mental Health help lacking; only one group session a few days before discharge. I needed more encouragement/counseling earlier
3. Hospital staff during first 30 days did not tell me orienting stuff like:
1. You are in the hospital in intensive care
2. You have been badly injured
3. Date and day of the week
4. Introduce every nurse and doctor each time they were bedside
5. I couldn’t have food or coffee
6. I was taking intensive painkillers
4. Al was misinformed about his family leave act impact on summer unemployment.
5. Al had to spend hours on phone straightening out stuff like medical equipment deliveries, refund from Walt Disney World, new internet and address set up,
6. Nobody but relatives took the time to try to understand my communication in writing since I could not speak. No communication at all. No technology, pen and paper not always available.
7. Medical people missed taking care of horrible infection under my pelvic girdle: no nurses checked. No instructions on cleaning myself and washing girdle. It took a nurse not normally assigned to the rehab unit to discover what that awful smell about me was.
8. Medical people missed taking care of scab on back of head until too late: no one tending to it. Sent home with scab there and no homecare instruction and no nurse to take care of it.
9. Needed nurse, not personal assistant, during first days and weeks home from hospital for reassurance.
10. No training on how to write all appointments in black book, manage phone and transportation logistics and medical records, share medical information.
11. Personal assistant didn’t see scab/ infection on back of head though she was shampooing me.
12. Not clarified which prescriptions would be paid through workers comp, which through private insurance.
13. Needed working hospital bed first day home from hospital, didn’t get it for 9 agonizing days.
14. Needed working wheelchair first day home from hospital, didn’t get it for 3 agonizing days.
15. Needed working living room chair first day home from hospital, didn’t get it for 3 agonizing weeks.
16. No training for Al on how intensive my needs would be those first few days home from the hospital, no emotional support for him.
17. Was left alone and terrified first day home from the hospital.
18. No sympathy from day nurses on horrible pain from 5 day constipation, no work on making sure that didn’t happen again.
19. No help with the nausea/diarrhea once that started from day nurses in rehab.
20. Payment problem for visiting primary care physician.
21. Payment problem for hammertoe due to having to prove it connected to accident.

Halo Still On

Becky writes: Today was one of the worst since I have been home. I went to the Doctor today anticipating that he would remove my halo brace, and that instead i would get to wear a soft-side and plastic neck brace for the next few weeks while my broken neck finished healing. It didn't happen. I will continue to wear the metal halo, with all its limitations, through at least June 14th.

The problem is the humongeous wound on the back of my head from the Feb 27th accident. Apparently they stitched up the v-shaped gash, 4 inches across and 2 inches down, right away. No one ever mentioned it again or addressed wound care, as I had lots of other medical problems to worry about, and of course I can't see anything back there with the halo on.

Then last Saturday as Al was trying to comb my hair (he never does, only the hired personal aide that tries to shampoo me around the halo, quite a feat) he noticed that the hair was all stuck together and matted down, that the wound scab had partly torn open, that there was a raw wound oozing in the back of my head. He called to visiting nurse service ( I HAVE NO NURSE, JUST THE PERSONAL AIDE) and said "My wife's scalp is falling off". That got their attention. A nurse came right way, lifted as much hair out as she could, trimmed my hair all over (it needed it), explained that it was normal for the wound "shell" to hardened and then fall away, but advised us to just monitor untill I got to the doctor on Wednesday. I lost a little blood and tissue on my pillow each night.

So today the doctor said my neck was healing fine, but he couldm't switch me down to a collar because the collar will rub right on the wound. Instead I am going to a plastic surgeon Friday for evaluation, and it is likely they will have anesthetize me and clean the dead material out of the wound before it can begin to heal properly. Meantime, I don't see the spinal cord doc again until June 15th.

I came home and just cried and cried.

Halo date

Shel and I visited Mom this weekend. It was the first time we have been able to visit since she got home from the hospital. I was impressed by her mobility. Around the apartment she hasn't needed a wheelchair for a while now, but she took a big step last week and was able to make a visit to the doctor sans wheelchair with the aid of her walker to make it to/from the bus. The big news is that her doctor has tenatively told her that if her progress continues as it has been she will be able to get the halo removed on the 24th of May. That would be next Wednesday, yippee. Mom is understandably excited, she would still have to wear the conventional neck brace but that would be a big improvement on her current situation. Another milestone will be reached on the 26th when she is able to permanently ditch the pelvic girdle she has had to wear for the past 11+ weeks.

The road to recovery is long and there is certainly more to do, but she is getting there.

No Major News

I know we haven't updated forever and that many of you are just dying to know what's happening, however there really isn't anything to report. Becky goes to Physical Therapy 3 times a week and has a little bit of in home nursing care, but otherwise just roams around the apartment. Over and out for now.

Extra! Extra! Read all about it.

Ok, so we haven't posted in a while. On one hand that's been because there hasn't been a whole lot of news to report, but on the other hand I've gotten a bit lazy.

Today's news is that Dad has found an apartment that will be suitable so that when Mom comes home it will be to a different home. The apartment is a two bedroom with a dishwasher, washer and dryer, and fireplace and is located Along EP True in West Des Moines. Dad says it is between the Hy-Vee and the rugby fields, I can't quite visualize it but I know the area. Hopefully Dad gets in gear, because he said that he is going to plan on moving the weekend of the 13th. We will help, of course, but if he's not all packed up it could be a long day.

We saw Mom this weekend for the first time since she has had the trach tube completely out. She sounded pretty good, but you could here some wind coming out of the still healing trach cut. She said that the doctors expected that to heal up completely in the next couple of days. Mom is up and around much more these days. She goes to a cafeteria on the rehab floor for her meals and does lots of physical therapy. It exhausts her, and she doesn't like it to much because it's so hard. I think she spends about 3 or 4 hours a day working with the various people. When we were there she told that she had actually walked the length of the rehab parallel bars last Friday. She was pretty excited about that. Today Dad said that they had her walking a bit with a walker and the doctors said that she is doing well enough that the current plan is to release her 3 weeks from today.

Mom has been enjoying her time at Mercy Capitol a lot I think. She likes that it is close to her work and because of that she has had a lot of visitors, which at times has been tiring for her (she said thirteen of you stopped by one day), but she certainly enjoys seeing all of you. Mom is still receiving lots of cards too, so thanks to everybody for stopping by and for sending your cards. We all appreciate your kindness so much.

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On another note, I saw the official police report this weekend and one thing that stood out to me was the type of trailer that hit Mom. I had in my mind that is was one that would be used to haul gravel and such, but it was actually a flat-bed trailer, one that would be used to haul machinery. Just thought I would give that a mention.

Trach, over and out

The doctors removed Mom's trach tube today so she is completely free of breathing apparati. Yeah! Apparently they just take the tube out and the incision is supposed to heal on its own. They don't do stitches because it could damage the vocal cords. The incision is supposed to heal up in 3 to 6 days.

Other news today is that Mom gets to go the the cafeteria for meals which means that three times a day about three nurses have to help her into a wheel chair and she is then taken to the cafeteria for a meal. I hear that Mom is really happy about that because it is the first time in a month that she doesn't have to spend all day in a bed.

For the last few days or week Mom has been working with a speech therapist. One of the speech therapists jobs is to determine whether or not Mom has any permanent brain damage. So we were happy today to find out that the speech therapist has given Mom the all clear. Mom's head is good to go.

That's all I've got.

Moved to Rehab

Mom has been moved from Mercy Hospital over to Mercy Capitol at E. 14th and Grand to room 460. It sounds like she should be there for rehab for 4-6 weeks.

Weekend roundup

So yeah, the pictures are up. Pretty intense. Mom took it bit more directly than I imagined, and yet here she is, getting better everyday.

We didn't get to DSM until Saturday night, but it sure was great to hear Mom's voice again. It's been nearly a month. Her voice sounded better than I was anticipating and she is now able to eat, so all is going well. They are also supposed to close up the tracheotomy at the end of the week, so then she will be breathing and eating normally. Apparently they expect her to spend at least 3-4 weeks in rehab at Mercy Capitol, they are moving her there tomorrow.

We are currently trying to locate Mom and Dad a new place to live. Their current duplex will not do for an even mildly disabled person, like Mom will be when she gets out of the hospital. Currently the only bedrooms and bathroom are on the second story of a building that requires 3 steps just to get into. So, if anyone in the DSM area knows any apartment/condo rentals that are handicapped accessible let us know, we'd be interested in having a look.

Until we meet again.