Bunn’s Prairie

I am back from spring training again.  Had a good time.  During the trip to Florida, I picked up a flu of some sort, and did my best to avoid Kaley after I got back for a few days until my symptoms at least had gone away.  During that time I started to receive many phone calls from Kaley.  As stated previously, she speaks much more when speaking into the phone than in person.  On Monday however, I got to have a 10 minute real conversation with Kaley.  We exchanged several words with each of us responding appropriately on the complicated topic of what the heck happened.  She understands and remembers (being told, presumably) what happened.  She understands why she is where she is at, and why her body is not responding the way she is used to.  She also understands that things will get better with practice and time.  I’m relieved that she understand that our goal is for her continued improvement and for her to return home (and get back to “normal”).  I also told her about what it was like during the first week to month after the aspiration.  How scary it was for us, but how elated we are that she is coming back to us.

Please go and visit Kaley, she is always thrilled to have visitors.  Also, any letters that are sent to her at the nursing home will get delivered to her.  These letters also facility an visit by a staff member who then spends extra time visiting with Kaley, so letters are welcome too.  The address for the nursing home is:

Hopkins Care Center

725 2nd Ave S
Hopkins, MN 55343

Kaley is in room 272, but we are hoping go get a larger private room when one becomes available.

We’ve noticed an interesting development during the past month or so, and especially during the past few days. It appears that Kaley’s ability or desire to speak changes if you are in the room with her versus calling her on the phone. I was with Kaley on Sunday and called her parent’s home line from her room phone, I spoke with her mom for a couple of minutes and she told me how she missed Kaley periodically calling home to speak to them and when no one answered she would leave a message on the machine for their dog Toffee saying stuff like “woof woof woof.” cute story. Anyhow, Kaley was having a good day on Sunday, she was very awake and was responding appropriately to several things throughout the day, so I offered to let them speak to Kaley. Keep in mind that this was without any ambien. I put the phone up to her ear, and Kaley immediately said “hi” (followed by some coughing). Then she said “woof woof” into the phone (I presume Lynn had just told the Toffee answering machine story she had just told me). Kaley continued saying a few more things.

Then, as frequent commenter eb said as a comment on the previous post, I called eb on the room phone and Kaley said to eb, “I miss you too” (followed by some coughing). Then Kaley continued to say several things that I couldn’t make out. I didn’t have the context of the conversation, I could only hear Kaley’s half. Eb later told me that she had asked Kaley “How do you like your new place” and she thought she could understand some of what Kaley had been trying to say.

Any way, in both these cases, Kaley didn’t say one word to me and I was in the room with her for several hours speaking to her and asking her questions. She responded non-verbally. She certainly was relatively with it, but she didn’t say a word. I’m not sure if it’s something about having the phone to her ear and hearing a voice via the phone that makes something click, or if its that she knows that she won’t be able to communicate at all if she doesn’t do it verbally with a phone.

Something to ponder…

It’s been over 3 weeks since Kaley was brought to Hopkins Care Center. We are still happy with the care they are providing. She is doing relatively well with all forms of therapies. We had our initial care conference yesterday where we looked at an overview of Kaley’s care plan. Here is what’s going on:

1) Dietitian: She is tolerating her tube feeding very well. She has lost a few pounds (2.5) since she came to Hopkins. We’re not sure if that is because she was being weighed with her funny boots at Regency or if she is simply burning more calories with therapy here. We are going to continue to monitor and if this turns into a trend, we will increase her daily caloric intake.

2) PT: They have been working with standing and core strength. Their first goal is to help Kaley get strong and mobile enough that the staff can get her into and out of her wheelchair without the assist of a mechanical lift.

3) OT: They have been working with doing daily tasks like brushing her teeth, combing her hair, washing her face. She can do all of these things with assistance. We are looking at doing some electro-stimulation of her muscles which hopefully will help relax them. Unfortunatly her gastric-pacemaker might not play nice with that. So until we evaluate what to do about that, we may be stuck. We are also looking into getting a smaller wheel chair that will fit Kaley and meet her needs. All of the chairs that Hopkins has are too big and she quickly slides out of them due to her tone.

4) Speech: They have been working with interacting, mostly non-verbally. Answering y/n questions with hand squeezes. Also making choices from 2 options. And doing some basic swallowing. We’re a little hesitant to get too far into the swallowing due to her gastroparesis. There’s a cool bluetooth oximeter which we are interested in getting for Kaley so if she were to get sick and have trouble breathing an alarm will go off. Unfortunatly they won’t let me buy one w/o a prescription. I am working on that too.  An open notice to staff members at UMMC:  this simple device would have prevented Kaley’s injury and been much less expensive than what her rehab and treatment has cost.

5) Medical Needs: We shuffled a few meds around yesterday. Trying to move the meds that might make her nauseous away from the middle of the day when she is supposed to be working at therapy. We’ll see. Otherwise this is going well. We are looking into adding a 2nd or 3rd dose of ambien periodically throughout the day to increase her really awake times. I’m still doing some research on that.

We have decided that Kaley understands quite a bit about what’s going on when she is awake, but not fully with it. She has responded appropriately several times when asked about what had happened when she was only kinda with it. It appears she understands a lot, or some, but just can’t communicate in kind. Please keep that in mind when you visit her. I say this both to encourage you to say whatever it was you were going to say if she were fully awake anyways, and to caution you to watch what you say as she may understand it even if it doesn’t look like she would.

We are happy that many of the staff members have learned how to interpret Kaley’s subtle responses to questions. Better then us family members to some degree! Lynn and Skip were looking at pictures on our digital frame a few days ago, and several staff members started to gather around with interest. They were all surprised at how Kaley looked in some of our older pictures. “That’s Kaley?!? Really? Are you sure?”. Um…yeah…I’m sure. I thought it was pretty funny.

It was nice to see Kaley this week getting dressed again (even if it is in comfy clothes).  After 6 months of hospital gowns, I would think she’s happy too.  Wasn’t able to get a great picture with Kaley, but we’ll work with what we have.

By the way, Kaley has been doing OT/PT and Speech for the past week now.  They’ve had her doing some swallowing, answering yes questions via hand squeezes, standing on her own at a window with a bar, and other basic core strengthening techniques.