Archive for September, 2011

September 7, 2011

 

09-07-11

Thank you so much for your heartfelt comments on the blog. 

Here’s a quick update with information about Bruce’s service and way to honor his memory:

 

 

Memorial Services For Bruce Dan:

1PM, Thursday, September 8th, 2011

Washington Hebrew Congregation

3935 Macomb Street NW

Washington, DC.  20016

 

Our family has been planning for some time to participate in the Light the Night Walk for the

Leukemia and Lymphoma Society.  If you would like to make a donation in Bruce’s Memory, please follow the link below.

 

http://pages.lightthenight.org/nca/Montcomd11/teambbd

 

Donations can also be made to the National Marrow Donor Program.

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September 7, 2011

09-07-11 Wednesday

 

My heart is broken as I write this.  I am so sorry to have to tell all of you our sad news in this way.

 

Tuesday night, at Johns Hopkins, Bruce passed away.  

 

He had seen his children on Friday- with love all around.  He and I spent a quiet and wonderful weekend, listening to his music.  He had his best day yet on Monday; even the doctors thought we were turning a corner. But his tired and weak body just couldn’t rally anymore. Bruce was peaceful and in no pain.

 

I know he would want me to thank all of you for the amazing support, and love, and words of encouragement since our journey began.  I thank you too. Bruce was never happier than when he was teaching and this blog allowed him to do that.  It sustained him through many tough months.  You all sustained him through many tough months. 

 

When I know about arrangements later today, I will let you know.

 

Thank you.

 

Love,

 

Lisa (and Bruce)

September 2, 2011

 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)