Day 60

This might be the most thorough update of Kathy’s status yet…lots to report.

First, she has been shuttled straight to acute rehab, having been vetted by both the hospital for safe discharge and by Cottage Rehab for a capability to do four hours/day of combined therapies: Physical (basically lower body and extremities), Occupational (waist-arms) and Speech (neck up, where the mind stuff happens). Also, on top of the four hours, they throw in psychology.

Her therapies are on a fixed schedule, a half hour to an hour at a time, with rest periods and lunch giving her periodic breaks. For example, she’ll do a half hour of PT in the morning, then an hour in the afternoon.  At the end of her day she’s bushed, and needs a good two hours of sleep to be awakened for dinner. The rest is primarily to let her mind recuperate, although she does get plenty of physical exercise (compared to her previous two months of sleep and near-sleep). Six days a week.

The sessions, which I get to join, and am encouraged to join, are impressive. She has the attention not only of really good therapists, but of at least four in-house doctors, a case manager, and plenty of very skilled nurses.

So, how’s Kathy doing? Professional medical people, both at the hospital and at rehab, have used the same words to describe her medical salvation that I’ve used to describe the effect she has had in saving me from whatever lesser life I’d have lived had I not met her: amazing, miracle, bewildering. Kathy truly is becoming a poster child for neurological healing.

Yet that’s not to say there’s not a long hard row to hoe ahead. Kathy has endured an event of “massive bleeding” followed by several weeks of coma, brain swelling, vaso spasming, blow-your-mind drug intervention of the most addictive sort, and complications including prolonged resistance to awakening from paralytic and sedation intervention, and a considerable bout with pneumonia. As a result, her “deficits” are very present, and manifest themselves every moment of the day in myriad ways.

Yesterday I met with her rehab case manager, Max, who walked me through the Thursday (weekly) full-on seven-person (not counting therapists) team assessment. Mind you (she said) this is a very preliminary report (Kathy’d been admitted only two days prior), but here’s how it looks:

Anticipated discharge: 4-6 weeks

Anticipated discharge plan: home with adoring (small edit there, please excuse) husband

Anticipated discharge destination: facility setting (TBD at a later posting)

Other recommendations at discharge: PT, 1.5 hrs/day 5-6 hrs/week for 4 weeks; OT, 1.5 hrs/day 5 days/week; SLP (speech/language therapy), 1-1.5 hrs/day, 5-7 days/week x 4 weeks (See above TBD)

 

Current problems:

 

Impaired cognition, including severe short term memory loss, severe attention disorder, safety awareness problems, moderate swallowing disorder (need for constant swallowing supervision…side note: I’ve been spoon feeding her “honey thickened liquids,” with constant reminders to tuck chin and swallow twice – constant because of attention problems as she gets distracted very easily).

 

Impaired communication:  Poor initiation (identified as a barrier to being discharged). “Responds to questions only.” This basically means that, while Kathy can speak clearly and appropriately, she would rather not. For example, if you ask her a yes or no question, she will nod or shake her head in reply. But if you ask her a direct question, she will offer a very brief reply. Goal is eventually to achieve a conversational level.

 

Metabolic: Patient caregiver (me) to be educated in administering Lovenox. Maybe Kathy can teach me stuff like this.

 

Impaired leisure skills (they got that right…I played a version of ping pong with her and beat her three out of three, without even hardly cheating). She’s going to get some aquatic training for this, but I’m pretty sure I can beat her swimming too, at least in free style.

 

Impaired mobility: Right now she can’t sit up by herself, or even roll over in bed without help. But once in a wheelchair she can propel herself, and today she managed a few steps by herself with a walker and minimal support. Goal is eventually to have her capable of managing stairs, with supervision.

 

Impaired Nutrition/hydration. Current problem, but not identified as a barrier to discharge.

 

Here’s a really, really good one, one of my favorites…Pain Management: “Pt denies pain.” I can tell you this about Kathy: almost as much as she loves life, she hates pain (and not just for herself; at work she’s a great believer in epidurals.  But she herself stays away from all meds all the time). That she’s not in pain means the world to me.

 

Skin/Wound Management:  Scalp sutures, (from bone flap), PICC site healing, abdominal incision sites, all just need to be monitored and attended to…not considered barriers to discharge.

 

Impaired swallowing:  “highly at risk for aspiration with honey liquids.” This is one of my main tasks, to be with her at meals, to spoon feed her the (honey thickened) liquids in her diet…it needs to be done carefully, and I do it assiduously (“”Kathy, tuck! Tuck! Swallow twice! That didn’t look like you swallowed twice. Swallow!” It gets old, not just for me, but especially for Kathy, having to listen to me say it every single time, sometimes having to place my hand on her head and force her into a tuck…my great fear is that not only will she give me the look, but she’ll carry a subliminal grudge against me for the rest of our lives, just because I tried to save her from aspirating thick water…someone better back me up on this).

 

Risk of infection: Yes, but there are plenty of other more significant issues, so let’s move on – infection can be managed.

 

Safety and Risk and Restraint: Restraints are in place. Need side rails for bed, Bed alarm/wheelchair alarm, and X seat belts in wheelchair when not attended, due to risk of her causing self-harm, i.e., Kathy doesn’t recognize her limitations. (But really, who does? Still, for Kathy, and therefore for me, and for all of those who love her too, the risk of her falling is too great to ignore these precautions).

 

That’s about it for the initial (very abridged and ineptly edited) report. This will definitely be the last report of this kind. Neither Kathy nor I have any use for reality TV, and yet here I feel as if I’ve crossed over to that dark shore.

 

The undeniable reality is that Kathy is the best possible patient, will no doubt will herself to achieve the best possible outcome, has a (sleep deprived but eager) supporter who’s trying to be the best possible supporter he can be, has prayers surrounding her and infusing her from the most supportive universe of friends and family imaginable, and has lucked into a healthcare system at Cottage that practices what Kathy always preaches: Patient Care Above All.

21 Comments on

  1. What amazing progress. It all sounds like so much work but my goodness what a miracle. I believe Kathy has even more in store for us in the miracle department. Wow Richard you are amazing too. I will keep praying! But oh my it’s just so wonderful to hear this. Come on Kathy!

  2. Thank you Richard for the update. I really appreciate you letting us know how beautiful Kathy is doing. I’m so glad you aren’t in pain Kathy, despite how difficult your life is right now. I love and respect you both greatly. My prayers continue.

    Dani

  4. This is such great news Richard. Frank & I both want to thank you for sharing so much over these weeks. You guys are such a good example of unconditional love and support. It’s made us take a good look at our choices, both life and ‘the other’ tough choices. Much love and prayers still coming your way. xoxoxo Netta

  5. My favorite part is the Anticipated Discharge Plan! This is a tireless journey, but you’re both making great strides. Sending love and strength from Manny and me. Bravo Kathy! Bravo Richard!

  6. Oh, what wonderful news! Thank you so much, Richard. These updates mean the world to us. Yes, long road ahead ~ but with your love and support, there will be no boundaries! Great things are ahead ~ come on Kathy! Prayers, prayers.

  7. Thank you so much for the update; so wonderful that you would include us with the details of Kathy’s condition. I am sure it is completely overwhelming and most important to just stay in the present moment step by slow step. She is so amazing and your great love for her will go very far in her recovery. We will all continue to hold you up in prayer, you dear man. So thankful she is not in pain. I am sure she will make great strides in the next few weeks….she is truly a MIRACLE…..thanks to the power of LOVE.

  8. Richard, this is wonderful news! Thanks so much for the update…now you can just go forward with your love (double entendre), living life. You are both such an inspiration.

  9. So happy for Kathy’s progress, I know she will work hard in rehab and make great strides…. she is a trooper!!

  10. I got your back about the aspiration!! I love you. Can’t wait to be there again for my turn at chin tuck and swallow duty!

  11. Richard, I can’t help but believe that your amazing love and commitment has brought Kathy back this far and we all thank you for that. The road ahead may be long but I have faith in you both. I hope all your cheerleaders out here in the outer world are giving you strength. Feel the love!
    ~Uma & Mitch

  12. Thank you for the update on Kathy’s progress Dick. I’m so glad she has you beside her on this long road to full recovery that will be taken one step after another. it may seem long, but you’ve already gotten over the big hill and at least now you are on level ground.

  14. Yay … just wait !!! You are going to be amazed at what she is going to accomplish in 6 weeks, then in 6 months, and then this time next year. I was so happy to see you at the post-office Richard, but our time was rushed and I want to make sure you still have my # if you need ANYTHING… 234-3161. Blessings abound, Linda

  15. It’s now quite obvious why we experienced the meteor shower……The angels were all dancing The Kathy!!!!!!!!!

  16. I so loved the picture that you posted with the previous post. When I showed it to Joanie, we both just marveled at the glint in her eye and the amazing smile. And even though today you outlined all her issues yet to overcome, you can see in her face that she is in there, in that same beautiful way she has always been. What a privilege you will have to stand beside her and witness her return. Thank you for your never ending love for her and the example it sets for all of us who have someone in our lives we are trying to love as much as you two. We are all praying often for both of you, including my mom and Brandon. (by the way, Brandon and his wife have great news, they are expecting! We will be having our 3rd grandbaby from Joanie’s youngest in December and Brandon and his wife in March) Whisper our love to Kathy as often as you can. We will hope to come for a visit in a few months.

  17. Richard I love the way you crack jokes when you are writing about some really serious fecal matter! I will be more than ready to help you give Kathy some lovenox. I also volunteer to take her for a visit to Franklin’s pond! What about her long term memory?? Maybe she will remember how to give her own dang lovenox?? What about music? What about wheelchair yoga?? I would volunteer to do that with her !!! We will see you next weekend hopefully… sounds like that is a better time to see our busy lady!! She is rewiring her brain and that is very hard and exhausting work for both of you.. Happy Birthday. YOU are the miracle behind Kathy’s recovery.. I believe that with all of my purple heart. I pray for your strength and spirit. I will bring you some bread.. stacy

  18. 4 – 6 weeks is a great IRF length of stay – rare these days in times of discharging folks sooner rather than later. Kathy should make some greqt progress! The discharge therapy recommendations are very high intensity – more intensity/frequency than a typical outpatient clinic would provide. Sounds as if transfer to another facility may be the plan? If outpatient clinic is the plan, perhaps consider checking insurance benefits including pre-authorization needed and book her outpatient appointments well in advance when you know her discharge date. Otherwise, there can be a gap while Kathy waits to get into her outpatient appointment. I’ve mentioned Rehab Without Walls before – they basically provide Acute Rehab therapies in your home setting. Again, I don’t know if they offer services in the SLO area or if Kathy’s insurance would cover.
    Best Regards, hugs from Michele and I

  20. such good news to hear of the many positives in her recovery (with the strongest “positive” of all a tie between Kathy’s wonderful willfulness and Richard, your devotion). To have a road map of tasks to be accomplished, and to have uncertainty removed – must be such a relief. Continued thoughts and prayers as you both continue on the road to recovery.

  21. What wonderful news! All things considered I thank God for the many blessing there are and that she has you, Rich, such a wonderful, devoted life companion. Our thoughts and prayers remain with you both. Slow and steady wins the race. C’mon Kathy!

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