9-02-11 Friday  +10 months  

 (From Lisa)

 A journey of a thousand miles begins with a single step. (Confucius)

Status:    Bruce remains off the ventilator and getting oxygen assists from a variety of devices.  Steps foward we hope. 

Events:   It has been a wild ride since Bruce came off the ventilator on Tuesday.  Tuesday night wasn’t great, and Wednesday night was even worse.  The doctors were playing musical masks trying to find something that he could tolerate and would deliver enough oxygen.  Bruce was exhausted; his oxygen levels were all over the map, and medicines to take the edge off were administered too late to work.

Finally yesterday afternoon we seemed to have hit pay dirt. The doctors found a BiPAP mask that fit well, delivered plenty of oxygen and he could live with.  Since then we’ve been on a calmer and more stable ride.

As mentioned before, the BiPAP mask delivers a punch of oxygen when Bruce breathes in and out.  The ultimate goal is to use this at night, with a more conventional oxygen mask during the day.  For the first time today, we made some progress toward that. Bruce was able to breathe well with a high-flow nasal cannula for nearly four hours. That was a big step for sure!

Today too the speech pathologists paid us a visit to give Bruce his swallow test.  After being intubated for so long, Bruce has to prove that he can swallow well enough to drink and eat, and have his NG (nasogastric) feeding tube removed. The test included coughing, trying to talk, swallowing a few bites of applesauce, among other exercises.   As anyone who knows Bruce knows, there is nary a test he hasn’t aced in his life.   Unfortunately he didn’t pass this one.  The speech pathologist felt his swallowing wasn’t quite consistent enough yet.  The worry is aspiration – without a good swallowing mechanism food and water can end up in the lung instead of the stomach.  So the feeding tube stays in until the next test on Tuesday. (The swallow folks don’t work on weekends or Labor Day apparently.)  He was able to swallow a small ice chip to their satisfaction, and to his utmost delight!  (I am sure it tasted like the finest champagne, after no water by mouth for weeks.)  So we have permission to down an ice chip now and again under strict conditions, such as the proper breathing rate, number of chips, etc. Bruce, of course, still has his priorities.  He managed to ask if it could be Italian Ices!  The answer was no.

Comments:   The goal of all this is to support Bruce’s breathing and his lungs while doctors continue to treat the CMV, and allow the lungs to heal as best they can.

As I have mentioned before, we have an amazing medical team.  Early on, I added a critical member of the team at the suggestion of two close friends who have been through the cancer battle with their loved ones.  They suggested I talk with palliative care .  The palliative care nurse told me that many patients have the misperception that palliative care is called in only near the end of life.  In fact, they work to reduce pain and stress during any point in a serious illness.   This nurse has been an amazing help, especially after Bruce’s miserable night Wednesday.  She agreed with me that this could not happen again, and worked out a plan with the doctors for drugs that will relax Bruce when necessary.  I hope none of you ever has to go through something like this, but if you do, you want these folks by your side.

Thanks to all of you for being by our side.  That has been a critical source of comfort as well.

Have a great holiday weekend.  I’ll update everyone on Tuesday. (Even bloggers get to take Labor Day off!)

 Love,

 Bruce (and Lisa)

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16 Responses to “”

  1. joel steinberg Says:

    We hope the update on Tuesday will be better–and that you pass the swallow test. (my experience was that unless there was brainstem dysfunction, or altered anatomy, everybody eventually passed the swallow test). What an ordeal to endure. Joel and Margaret S.

  2. Aileen Pincus Says:

    What a week! (and what a journey)–but so glad to read of forward progress…thinking of you both as always this labor day weekend.
    Love, Aileen

  3. Nancy Douglas Says:

    We’ve been thinking about you constantly since Bruce has been in the hospital this go ’round, and are rooting for all of you at every turn. All the best, Nancy, Walter, Lacy, Elizabeth and Georgia

  4. jpsf Says:

    We hang on to every positive small step and pray for bigger steps soon! Lisa, your strength is beyond extraordinary! Prayers and more prayers.

    Love, Judy and Ken

  5. Henry Miller Says:

    Try to catch up on YOUR sleep and maybe even somehow pamper yourself a little. The caregivers need care, too!

  6. Robin Miller Says:

    How about ice chips flavored with a German TBA?

  7. darya nasr Says:

    Lisa, Praying and hoping for a good night sleep for Bruce and a smile on your face. You are incredible! let me know if you need help with back to school. Hoping Bruce to be there next year at back to school. Much love,

  8. B J Stiles Says:

    A quick and vigorous endorsement of bringing palliative care on to your team. I’m privileged to have access here @ UCSF Cancer Center to Dr. B.J. Miller, an absolutely wonderful person. A remarkable physician; an even more impressive human being. A triple amputee, who skis, sprints, charms, and listens in such brilliant manner as to cause each of us to want to benefit from time with him on into the next century.

    If interested, I can forward a link to a wonderful article about him in the June 5th edition of the San Francisco Chronicle.

    And the week of June 12th, I begin Round Two of Radiation, this time on the incredible CyberKnife equipment.

    Much love and admiration to both of you!

    B.J. Stiles in San Francisco

  9. Art Ulene Says:

    Thinking of you both this morning and wishing for a good day for you. Love, Art

  10. Laurie Samuels Says:

    Harry and I are with you in thought and prayer daily… thanks for the continuing blogs about progress. Hope that today will bring more relief and rest… Love to you both. Laurie

  11. Penelope Douglas Says:

    Thanks for keeping us all updated Lisa…your strength, positive attitude and good humor in the midst of all this is absolutely astounding! And I’m sure Bruce depends on those qualities to get both him and you through what we all hope is merely a bump in the road on his journey to wellness. Agree with you 100 percent about palliative care. It’s often both a lifeline and a lifesaver!
    Keep up the good work!!!

  12. Bill Says:

    Hang in there!

    Keep asking for Italian ices – sounds like a great idea to me. Were this Berlusconi, he’d be asking for Italian hots…..this is different!

  13. Roxanne K. Young Says:

    Bruce, we’re thinking of you all in Chicago! Keep up the good work. Roxanne

  14. mike magee Says:

    Lisa-

    Good choice on palliative care – they see the whole picture – and as you learned – are terrific advocates. Glad the tube is out and expect the swallowing will come along. Hang in there – and love to Bruce!

    Mike

  15. Gail Lehmann Says:

    Lisa, first time I have been able to catch up on your blog in a week. I was in Colorado with my grandson. It is certainly a roller coaster ride and hope for the best…
    Love,
    Gail

  16. cancer center in philadelphia Says:

    Thanks for the great info and the sharing of your insights

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