Bunn’s Prairie

Just a note to let you know that Kaley is getting ready for the holidays and would love some visitors. Christmas is her favorite time of year! We are decorating her room, holiday music is playing, we have loads of Xmas videos, and song sheets for singing carols. She can hold the music and mouth the words to the familiar tunes. She can interact by answering yes/no questions with a smile or head shake and can spell some words on her message board. She understands what you are telling her…just speak clearly and not too fast! She would love to have you come! We were able to take her downstairs to the cafeteria on Thanksgiving and although she couldn’t eat the turkey she enjoyed her orange soda and seeing her friend Jessica from La Cross and her sister Christa home from college. Andy is getting a much needed break in the form of a company outing to Florida this weekend Nov. 30 – Dec. 2. If anyone is available to visit she would love it. Kaley took 15 steps (with assistance) in therapy yesterday and sat without assistance on the edge of a therapy table for 28 seconds today. Yea!!!

I heard the most wonderful story this weekend. During the early stages of Kaley’s coma, Kaley’s father met a mandolin player, Paul, at FUMC. Skip invited Paul in to Kaley’s room to play for her. At the time, the most Kaley could muster to respond was to turn her head toward Paul while he played. I don’t recall if Kaley was handing out her million dollar smiles yet at that point. Anyways, Paul told us a story this weekend, and we asked him to write it up so I could post it on the blog. This is what he wrote for us:

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Kaley, you sweetheart, I just want to say that I LOVE playing the mandolin for you! Your smile just melts my heart, and the hug I got? I’m still swooning! God bless you! I will be back every week until you forcibly kick me out!

But what I really want to say is that you have blessed my life in a very unexpected way. See, Kaley, you remind me a lot of my middle daughter, Molly. (Something in your eyes, or maybe its in your smile. I caught a glimpse of it when I first met you at Fairview ICU.) Sometimes things can get rough in a family, and such was the case in ours. My Molly seemed to be going on a path that was quite different from what her mother and I had expected. She got married last year to Shawn, a man that we didn’t exactly approve of.

I couldn’t bring myself to see my daughter, Kaley. She had gone on such an unexpected path—I hadn’t seen her for almost a year and a half when I met you. But every time I saw you, I started thinking of my Molly. About how much I loved her. And about how much my love for her was absolutely unconditional. And then I started to think about the fragility of health, and life itself. I thought, “the time is now to reconcile with my daughter. To tell her I love her. And to embrace her husband.” So my wife and I flew out to Washington DC, and had the best Thanksgiving ever with Molly and Shawn. It was so wonderful. I hugged my Molly, and Molly hugged me. Shawn cooked such a good Thanksgiving meal, I even gave him status as “most favorite son-in-law” (a much-coveted position, to be sure!).

So I thank you, Kaley. And I thank your Mom and Dad. When I saw how they love you, and how they surround you with acceptance and love, I knew I had to do the same thing. My family is now whole again. I will never, ever forget this! The love in your eyes and the smile on your face are the most beautiful things ever, Kaley. Thank you!

Now, I must get busy, for I’m going to practice some of those Christmas carols I was rough on last night. And when Christa comes back we are going to shoe-horn her cello in your room, and we are going to raise the roof! And you just sing whatever you can, OK? A little here, a little there—its all good!

Thanks again for the smiles, Kaley! And that hug! Wow! You sweetheart!

…Or most of a word anyways. I asked Kaley why she was so fidgety the other night, she tried spelling out some long word with a ‘q’ in it. I figured she wasn’t pointing to the write letters, so I got out the dry erase board and had her write out the word, and she did! She wrote “squirl” at which point I guessed she was trying to write out the word squirrelly. She said that was what she was trying to write out. The letters looked pretty neat all in all.

After our heart to heart last Wednesday, the pulmonary team repeated an aspect of the sleep study on Thursday night.  The kept her capped and just gave her oxygen support via a nose cannula.  The recording showed nothing abnormal.  Vindication.  The removed Kaley’s trache on Friday.  This opens up several more facilities as far as nursing homes/transitional care units (TCUs).  We’ll see what we come up with now.

Kaley’s father and I had an unexpected, but much appreciated heart to heart meeting with Kaley’s main doctor at Regency and a representative of hospital Management tonight. During this meeting we discussed the increased tensions and animosity between us. It allowed us to clear the air in terms of the goal of care for Kaley at Regency. It was an opportunity for them to reassure us, in light of my unfortunate conversation with Kaley’s previous case manager, that Regency and the medical staff there do in fact have Kaley’s best interests at heart. The meeting was intense enough that it even brought Kaley’s physician to tears as she explained that she does not care about the financial side of things and was deeply hurt by the implication that that was not the case. Through her tears, she explained that Kaley is only 2 years younger than she is appreciates how much life Kaley still has to live. I believe her. I trust her. We agreed that Kaley needed to find a facility that had sufficient nursing staff (somewhere in the order of 1 nurse for 10 patients) plus aides, and would provide more PT, OT, and speech therapies than Regency could offer. This has been my, and I believe Kaley’s parent’s goal, from the start. It is reassuring to know that the staff at Regency has a similar goal.

We also cleared up an issue involving Kaley’s alleged sleep apnea. It turns out, that the pulmonary team has no idea if Kaley has sleep apnea but rather does strongly suspect that she has some sort of other respiratory issue, which a sleep study would help resolve. This is not the message I was given from the nurse practitioner who spoke to me. The actual Dr. gave a message to deliver to me and then delivered a different message to Kaley’s primary Dr. Once this was brought to light I pointed out to hospital management that pulmonary has made no effort to contact Kaley’s family except to “look for us” during the day. I pointed out that all of us have phones (and the numbers are written on the white marker board in the room). I feel that the Pulmonologist should be ashamed of herself from a professionalism standpoint for the lack of communication that she has given to us. I am expecting a phone call tomorrow.

With these issues in the open and everyone renewed on the same page, why do I still feel so lousy? Some of these tense conversations started in front of Kaley, and even my sister commented (who visited Kaley while we were off having this heart to heart) that it seemed like Kaley had “something on her mind.” Did I make the right decision by turning down medication that would help Kaley stay more awake throughout the day? It seems like she has been more awake. Why is Kaley not speaking as much as she did 2 weeks ago? My parents heard her say “hi” clearly yesterday. That’s good. They also saw her walk 4 feet (when prompted) during PT yesterday. She took another 2 steps today and stood up and sat down several times. Is there something more I can do? Would it help if I spent more time at the hospital? It takes all of my self control when I walk into her room to not simply nestle into her and sob. Some days, like Monday, I couldn’t help but do just that. Kaley had to comfort me. I feel terrified that if I do that too often she will loose the will to fight, as causing “one of her peeps” pain is always the last thing Kaley wants to do.

I guess all the more I can do, is to get down on my knees and pray:

Lord, please give me the strength to continue to be the rock Kaley depends on.

Lord, please do not let my weaknesses and shortcomings break down Kaley’s demonstrably strong will to live and persevere.

Lord, please give Kaley’s health care providers the wisdom and insight to heal Kaley

Lord, please let some good come out of our suffering, or at least our response to our suffering.

Amen.