Bunn’s Prairie

Kaley is definitely progressing into the level 4 on the Roncho scale.  What this means is that she is more aware of her state.   In some people it manifests itself in anger.  In Kaley’s case, we think it is manifesting itself as sadness.  Seems appropriate to me.  We have noticed that Kaley has really enjoyed and appreciated what few visitors she has gotten.  I would like to invite everyone to come out to the hospital to visit Kaley.

I would also like to formally invite everyone to stop by the hospital on Halloween night (Wednesday) between 5pm and 8pm.  Feel free and visit in costume if your travels have you in one.  Given that larger crowds are generally not so good for patients in Kaley’s state (as she will probably get overwhelmed), if people could at least stop in for a short visit to say hi, I know Kaley would greatly appreciate it.

Hope to see you on Halloween.

I visited Augustana Health Care Center of Minneapolis this afternoon with Kaley’s parents and my parents. We have decided that this facility is not equipped to provide the adequate level of nursing care for Kaley at this time. When I found out that on the unit that Kaley would be at would have up to a 44 : 1 patents to nurse ratio at night, I had made up my mind.  This was with the current census.  The worst case would 54 : 1!

The hospitalist at Regency has been giving the hard sell on going to a nursing facility (any nursing facility) yesterday. The doctor’s point is a valid one. Kaley will probably get better rehab services at a nursing home than she will in the hospital. What I don’t think she is fully appreciating is that if Kaley’s medical needs aren’t being met properly, no amount of rehab will return Kaley to her baseline.

During my visit Eileen, of Cheese Curds and Loose Sheets fame, came to visit. Kaley indicated that she wanted to say something via her alphabet book, and she spelled out to Eileen “I wanna sing”. We were all pretty happy to see that.

I had a wonderful time with Kaley last night. I was there for 3 hours and she was awake and responding appropriately most of the time. I spent the first hour talking about different stuff, work, therapies, Kaley’s Christa’s auditions into grad school going on that week. She seemed to enjoy hearing about all of these things. Eventually one of my sisters arrived, we visited. Kaley started to look tired, so we tried to relax her and she got relaxed but didn’t fall asleep despite her looking and claiming to be tired. After my sister left I decided to put on “A Nightmare Before Christmas”, one of our favorite Halloween movies (or is it a Christmas movie?). She held my hand and watched the entire movie with me and responded appropriately to the kissy-face scene at the end and she leaned over and wanted to give me a kiss.

On less pleasant new, Kaley is getting a new case manager at Regency. I haven’t liked her old case manager from the moment I met her. The first time we met, she explained that she was in charge of finding the next place for Kaley to go to once her acute issues (the respirator) had been dealt with. She brought a pamflet for a group home that she thought might be appropriate for Kaley that was located in Stillwater MN. Given that Kaley and I live in downtown Minneapolis it seemed odd to me that she was offering a place in Greater Minnesota outside the metropolitan area. She then punted the entire process of finding a place to me, basically sending me to the internet and Google. She tried to explain that the pamphlet she brought was intended to give me ideas to refine my search. I went with this for about a week and every place that I contacted said they were shocked that I was doing this search and not a social worker. I finally gave up and punted the process back to her annoying saying “apparently this is supposed to be your job.”

After weeks of looking, she was able to find exactly 1 place that would accept Kaley due to her medical complexity. She immediately wanted to schedule the transfer (before I had even seen the facility). I explained that the soonest I could tour it would be Friday as Kaley’s parents are out of town until then. So she wanted to schedule it on Friday afternoon. I responded to this, first her neurologist wanted to see Kaley again late Friday afternoon, and second transferring any patient on a Friday after noon is a recipe for disaster (and I was surprised she would even suggest that given her experience). So she said well we’ll schedule it for Monday then. To which I replied that I thought she was putting the cart in front of the horse because I hadn’t even toured the place yet. For all I know it could be a shit hole. To which she said that Kaley’s 30 days of Medicare were up and they were not treating her for anything anymore and they would not get paid if she stayed. Ah. Now I see. I told her that that was not our problem, but rather quality care for Kaley was no only my first concern, but my only concern. I suggested that they bill Kaley’s secondary insurance if that was the case, or heck bill her directly (she’s already considering declaring bankruptcy). There were a million reasons why these solutions would not work, to which I said fine don’t bill anyone and eat the cost. She didn’t like this solution either for some reason. I told her she needed to continue looking as federal regulations states that she must find a facility to discharge Kaley to that both accepts Kaleyand the family accepts and she had not yet fulfilled that since I had not accepted the 1 place she was able to find. To which she replyed that she had checked lots of places (but no group homes) and had found 1, therefore she had fulfilled the federal regulation. I pointed out that I had not accepted it yet and might not since I had pretty high expectations. I went on to explain to her that my family has 70 years of cumulative experience in nursing home care including overall administration, medical records, and billing. I explained to her that I know my and Kaley’s rights and her responsibilities and her attempt to scare me into accepting the first place she found reguardless of it’s qualifications (which may be fine, I just don’t know yet) would not work. We both agreed that I speak to her “someone higher than her”, to which I suggested her supervisor.

I spoke to her supervisor and explained what had happened in not quite as logical away as I have here, but close enough. She suggested I receive a new case manager, to which I agreed as the previous one had made it clear that she did not have Kaley’s best interests at heart. I hope this woman gets fired. Not because she didn’t work hard. I am sure she did. I hope she is encouraged to find a different line of employment that (1) does not involve social interaction with people because she is a piss-poor communicator, and (2) other people’s well being does not hinge on her doing a good job, as she has proven that she is pretty heartless. She should go work for an health insurance company. She would fit right in there.

I finally was able to speak to pulmonology.  Unfortunately this was also probably the last time I speak with pulmonology at Regency.  It turns out Kaley probably has a light case of sleep apnea.  Not really a huge deal, but something that’s annoying none the less.  The recorded Kaley’s O2 levels last Friday night and found that several times through the night her 02 levels would drop down to 79%-ish for somewhere in the 20 seconds range and then return to the normal 99%-ish range.  Apparently the drop was gradual and the return was gradual and they still got a good pulse reading during these times so it was probably not a bad reading from the machine.  So they recorded Kaley’s O2 levels the next night, this time with the dome on, and she stayed at a constant 99%-ish throughout the night.  The traque is installed below the part of her throat that would normally collapse if she had sleep apnea so breathing through the traque with the dome on would bypass the collapsed part.  We won’t know for sure if she has this or not without doing an official sleep study, but the findings seemed pretty clear.  Insurance will not pay for a sleep study until she is outpatient, so for now we’re stuck with the traque for a while.  The upside to this is that this will make it that much more difficult for Regency to find a transitional care unit for Kaley to go to until she is ready to go to an accute neuro-rehab facility.

I witnessed Kaley’s speech and PT yesterday.  She did very well.  The speech therapist did not work on speech so much as other non-verbal ways to communicate.  She made up a notebook of some useful pages.   One page had different things around the room, like Bed, Chair, Bathroom, TV, Pain.  She asked Kaley to point to “chair”, Kaley did.  Then point to “Bathroom”, Kaley did.  She pointed to each one in turn.  Then she brought up a page that had the alphabet on it.  She had Kaley spell “Dad”, and “Cat”, and “Kaley”.  She was able to do this as well.  While these were pretty simple things to do, they demonstrate some pretty complex thinking abilities in Kaley.  This bodes well for the future.

PT did not go quite as well.  To start, when they told her she was going down to the “gym” for PT, she moved her legs off to the side of the bed and just needed some help standing.  Then she took 2 steps toward the chair they were going to move her to the gym in.  These were both good things.  Unfortunatly by the time she go to the gym she didn’t look like she was doing very good.  She indicated she was nauseous and spit up some stuff, but did not get sick.  She was able to stand 2 different times, but we could all tell that the nausea was taking its toll.  Plus the PT was right after the speech and Kaley was a bit tired out from the speech session already.  We returned her to her room, and she was soon sleeping in her chair.