Tuesday, June 29, 2010

Day 14 One small thing left to do.

When it rains, it pours.  Something unknown is giving Susan horrible itching.  The benadryl injections are doing no good; the good Infectious Diseases Doctor wrote for an antihistamine twice as strong and some cortisone cream.  After having the drugs for 30 minutes, she went to sleep -- something she didn't do last night.

The surgeon's partner called on us with a further status report on the fistula on the drain tube and the small intestine.  The course of treatment Susan selected was to go onto IV feeding through Monday at the latest.  If by slight chance the draining material goes back to the correct color or to zero ccs/day say on Friday, then the tube can be pulled, and Susan can be discharged.  If it doesn't, we go to Monday. If there are no changes, Susan goes home with the drain until it produces nothing.  All things are healing well; her "getting stronger" campaign will resume when She leaves the hospital.

We are searching for a needle in a haystack. Actually, what we seek was probably lost to the Katrina floods; old records get stored in basements that tend to fill up first when it floods outside.  There is one more contact to make, who might possibly save the day if she can locate 24 year-old medical records that were either scanned or stored above ground level.

We were starting to stimulate her taste buds with an "Aunt Patsy Cheesecake."  She got one bite today.  I'm going to freeze some pieces for her future enjoyment.
As has been said for decades, so it goes...
Love to all John

Monday, June 28, 2010

Day 13 and the Saga Continues

Sunday, yesterday, was a very quiet day; the hospital had no wild influx of patients. There were no regular procedures performed. Susan was able to get a lot of rest and began to enjoy eating. We haven't brought any food in for her except some bananas and coffee. She is in the early stage of adjusting to her surgical changes. Her diet will slowly return to normal. She is feeling good. She is doing her usual command and directing things. We all have to make sure we shape up. :)

At 3:00 PM yesterday, I dialed into a conference line and joined friends of Susan from two continents, Hawaii and other parts of the US, who had dialed in earlier. Each of them was able to give a short "Poor Baby" message of love and support. Barbara, Susan's business partner, set up a piece of the 1812 Overture conclusion with real cannons to play as a thunderous TA DAH! ending. Susan told the friends that she feels carried by all of you. Her laughter was almost constant, and she was beaming from ear to ear. Thanks Barb and Derek for making that happen.

Today an image was made of the ostemy sight to see how adapting is coming along. Susan will have to stay a few more days (definition of few not offered) as the doctors watch something they are not happy with hoping it will clear up with a short course of IV antibiotics. She doesn't express any displeasure with this; she wants to return to the world with all things ship shape. She has a nice big room with north facing windows; the building has good climate control. She likes the people caring for her, and she is tolerating the food. In truth, the food wouldn't be much different if she were home. It will take about six weeks for her system to get back to normal function.

The care team of Mary, Bob, Pam and I are faring well. Susan has acclimated to sleeping here without one of us being with her; so, we can easily spread ourselves over the day and early evening. She has her two electronic book gizmos and the TV. If she wakes in the night, she starts reading or watching until she falls asleep again. And, nobody but nobody can care for her personal activities of daily living like Pam.

From the center of our universe to you all across the world, MUCH LOVE. John

Saturday, June 26, 2010

June 26 Day 11

Today was a day of visitors and resting.  Susan hung a sign on her door that said don't come in until xxxx.  She got more than an hour of uninterrupted snoozing.  Healing takes time; her body has been run through a wringer.  Did you ever see a "wringer-type" clothes washing machine?  After the soaping and rinsing, the person fed the clothes into the crease between two rolling hard rubber cylinders.  The water was squeezed out.  A person run through a wringer would be quite wasted.  As much as possible normal life activities are being carried out.  She has the ministrations of dear Pam, who by the way, has been in our family life for more than 14 years.  She is wonderful for Susan; she knows what Susan wants usually before Susan asks for it.  Our family is blessed with her in our lives.

The doctor is still forecasting a Monday discharge.  Getting back home will be a great relief in itself.  My dear daughter Rebecca is staying overnight with her to keep the bad spirits away.  She's giving a gift to her dear old Dad, who endured the "sleep" chair last night.

Mary and Bob are a blessing to have, especially when Mary reminds Susan of the Golden Rule:  It's better to look good than feel good.  Ciao.  Until tomorrow. 

Friday, June 25, 2010

Day 10 In a regular private room

Well, today's post is later in the day than usual. I got to the hospital shortly after noon; the three other caregivers were there, and Susan was being moved from a double to a single room. She is now in 636 East.

She is spending more time in her wheel chair. It's more comfortable than the bed. She took a nap for a couple hours and got out of bed again in the late afternoon. The doctor is very pleased with her progress. Monday is a targeted discharge date. She so wants to be home. If things proceed as they are now, Monday looks pretty good.

Plan "Strengthen Susan" is in process. She is eating some. It'll take awhile to kick start her alimentary track into operation. She's still not up to phone calls. Coordinate visits with care team.

Bye for now. Love to all. John

Thursday, June 24, 2010

Growing Medical Team

Susan slept well and is now up in her wheel chair in her pink bed jacket. She had dinner, breakfast and lunch (if you can call it that). Now her diet is low fiber. She's awaiting a transfer to a regulah room. She said a while ago that she was going to roll around the hospital. We'll see. She still tires easily.

The Medical Oncologist visited this AM. She reported that the specimen was so complex that it is going to the Mayo Clinic for a higher level opinion in order to identify it specifically. The identity is needed to choose the course(s) of treatment. This task will take 10 - 14 days. Susan has time to heal some more, which she is doing at a rate surprising to the staff. Still getting antibiotics via IV several times a day. She has no tubes in her, finally. She must be strong enough to deal with whatever treatment is coming.

Her care team may grow in size with the change in room. Marie Strahan and Jeanne Argoff are in charge. We will run the details by Susan for her agreement. Love to you all.

Wednesday, June 23, 2010

Day 7 - ICU Doc's Report

Dad asked me to post a quick update from the doctor's meeting today.

Sparing you the medical details that make even my head swim, Susan has a new fight a head. The tumor attached to her colon/pelvis is cancer. After the ordeal we've all been through this past week, this is just icing on the cake.

We have several physicians/specialist lined up to see Susan and prepare our plan of action.

Now, Susan says, "We don't have any course but to charge ahead!" She said those words; we all must take that attitude to heart and adopt it as our own.

It’s a lot to process for everyone involved.

Continue to send prayers and well wishes.

- Rebecca

Tuesday, June 22, 2010

Day 6 ICU continues

Late this AM the breathing tube was removed. It was a relief to all of us. She's still getting a bit of O2 from a face mask for a couple hours. We're helping her breathe deeply and to cough. What she wants to do is sleep; she can't do that.....

We'll have a family conference with Dr. Palmer, the surgeon, tomorrow at 1:30 PM. He wants to be sure Susan is processing info clearly. He should be worried about Pam and me. We might not "grock" what he tells us. We'll be charting the possible courses for the future.

Thanks for your words of support and encouragement. Keep up the messages. We have just concluded step 1.

Love to all of you, John

Monday, June 21, 2010

Day 6 ICU Morning Report from ICU doctor

Susan looks good; her color is fine; her eyes are sparkling; she is animated and engaged when spoken to. The XRay of her chest still shows a lot of congestion; therefore, Dr. Hamm has decided that the tube will not be removed today. Procedures will continue unchanged. Susan will spend the rest of this week in the ICU. High level nursing care continues as well.

When the doctor decides that the tube can be removed, feeding will stop, the stomach will empty and the tube will be removed the next morning.

The colostomy specialist came today and changed the bag on one side; Pam changed the other side while I watched. She was a good teacher and provided lots of information for our use.

The three of us, and by extension all of you, are a little disappointed that the tube needs to stay in. Dr. Hamm said it was a precaution. He does not want a situation where he is forced to put it back in if Susan shows that she cannot independently breath. Susan appears to be more comfortable with the tube, and the nurses are suctioning it frequently. The saliva in the mouth continues to come, which means there will fluid to remove.

As of this time, 1100, Dr. Palmer, the surgeon, has not reported the results of the biopsy.

Thank you to all of you for your caring and love. We deeply appreciate it.

Much love from Pam and John and Susan too.

Sunday, June 20, 2010

Day 5 Evening in the ICU.

Pam was with her most of the day. She even had some laughs as well as as much massage Pam could manage.

All vitals are normal and steady. The plan is to evaluate Mon. AM's Xray and if all looks good to remove the tube. We will let you know what happens.
Bye for a good night's sleep.

Noon time Day 5

The latest from the collection of doctors is that progress is increasing in rate. The ICU doctor is targeting tomorrow for "extubating" (taking the ventilator tube out.) Today she is encouraged to do a lot of resting.

Right now, Pam is rubbing her feet and legs with a cool damp cloth to help her be more comfortable. The saga continues.

Day Five in ICU - Looking Good

Everyone here has just given a HUGE sign of relief. Susan has continued to improve and had a very good night. Another chest x-ray shows even less fluid in her lungs.

Everything is beating as it should (BP, respiration, percent of Oxygen in blood, etc.) Becca tells me I'm too fact oriented.) C'est la vie. The best news of all is we think Susan will come off the vent today. The doc actually said those words.

We all know that after 3.5 days of no talking my Darling Susan has many things to say!!! :)

Susan's personal assistant, Pam, has arrived and we are all so grateful she is here to care for Susan. Pam and Susan have such a special connection we know Susan will be much more comfortable with her Pam here to help.

There is still a long road to travel.

This is only the first few very hard steps.

Saturday, June 19, 2010

Day Four ICU - Evening Check In

Today's report - slow and steady progress.

Susan is still in the ICU and ventilator dependent, but she is slowly being weaned off. I spoke to her respiratory therapist today and she said that Susan is now initiating most of her breathing which is a great improvement to just a few days ago. She is on 40 percent oxygen, much improved from the 80 percent.

This is the best we could ask for.

She's doing really well. We all just need to be patient and let her body heal.

Dad's with her now and may have more news later tonight. Frank and I will be heading back to NJ tomorrow so Dad will be on his own for a few days. Any extra help from the locals would be welcome.

Day Four ICU - Morning

We are cautiously optimistic to report Susan is doing better today. A chest x-ray has shown the fluid levels in her lungs has decreased AND she is dependent on ventilator support for 40 percent oxygen. Twenty percent lower\better than last night. If she continues to improve at this progress, we are hopeful she will not be on the ventilator too much longer.

I spoke with the infectious disease doc this morning and confirmed she does not have sepsis. A HUGE relief. She had a localized infection in her abdomen from the rupture. She is receiving some nutrition via a g-tube and we're hoping her gut "wakes up" as they call it. Things need to start moving again, and they are, slowly.

Dad is holding up as well as to be expected and is starting to think and plan about Susan's care post ICU. Susan has spent many, many months in hospitals and is most comfortable when she has someone with her. Right now, she is sedated and has almost one on one nursing care. Once she moves to a step-down unit, she will need us more.

We are assembling a "care team" of close friends and family to sign up for shifts to allow my Dad to escape home, or catch a few hours of sleep. We don't anticipate implementing this care team for at least a week to 10 days.

I am impressed with the care Susan's receiving in the ICU. The staff is competent AND compassionate. The nurses and docs are knowledgeable and follow up on the myriad questions I ask. I've grilled them all about procedures, medications and expectations of recovery. They all smile and warmly say that every patient is different and we need to take this one day at a time. Not the easiest answer to process for me. But we will be patient. Hurry up and wait for our Susan to get better.

We all know Susan is a fighter. She will get through this.

Thank you all for your warm wishes.


Day Three ICU - Evening Check In

Susan is still being supported by a ventilator. The oxygen level has been reduced to 50%. It started at 80% -- so this is progress. Her fluid levels are decreasing. Good. Her BP is still above 100/xx. Good. She is being cared for by some very very caring and skilled medical staff. Last night she was given a bath by her tiny little nurse. I know she appreciated it.

Mary, Bob, Becca and Frank have been an immense support to me. Susan will be even more comfortable when her personal assistant arrives this evening.

We may be in need of an extra room, or place for our out of town care givers to stay. Preferably somewhere near the hospital or our apartment in Van Ness North. Please give me a call if you can help.

Susan is still seriously ill. It is not time yet for flowers or visitors; send your love and caring by commenting on this space. We'll let people know when visits are possible.

More later.

Much love, John

Friday, June 18, 2010

Day Three in ICU - Afternoon Check in

Becca and Frank are heading home on Sunday. They plan to return later next week. Susan's wonderful Personal Assistant, Pam, will be back in town tomorrow and on at least for Sunday.

Day Three in ICU

RN reports that her fluid levels are beginning to balance. Her BP is now over 100/xxx. These are good signs. A chest XRay is ordered. That will give us a picture of the fluid level in her lungs. We hope it will be less than yesterday.

She is conscious-in and out. We are making sure she is comfortable and not in any pain. Resting is the most important thing for her now. Today she has two nurses and is monitored very closely. Rebecca, Frank, Mary and Bob are her with me now.

ICU MD visited and showed us her films from this AM. Susan's lung function is unchanged. She is receiving 80% oxygen. The MD says it should be 20%.

This will be a long, long process.

Careful monitoring of diagnostic data changes. Prevention of further infection. Work to restore the proper balance of her vascular system, which will reduce the fluid in the lungs. The lungs have had an acute injury (MD called it that name) to tiny vessels; it will only recover with time.
She recognizes us and blinks and grimaces to communicate. She is not feeling much pain.

This is a lot to process for everyone involved. If you feel like you need to "do" something... please just keep our family in your thoughts and prayers.

We are unsure how long my daughter and Susan's sister are able to stay. I may need some support from my local friends, walking Lucy, watering plants or feeding John. It is hard for anyone to ask for help in this situation, so please offer if you are able.

We will keep you updated if anything changes.

Much love,

Thursday, June 17, 2010

Day Two in ICU

Rebecca here...

Frank and I joined my dad early this morning in DC. We immediately went to the hospital to check on Susan. Mary (Susan's sister) and her husband Robert joined us.

Today's update: Susan is still in the ICU and fully dependent on a ventilator due to fluid in her lungs. She has several drains and tubes to help reduce her fluid levels. The medical staff has her sedated and she is not in any pain. We are trying to find the right balance of sedation to keep her blood pressure stable and we are anxiously hoping the fluid recedes from her lung.

Susan has had a few moments of consciousness and knows who is with her. She gave me a wink when I said I love you.

Susan is fighting infection and our worst fear is sepsis.

We are literally taking it one hour at a time and praying for an improvement.

Please continue to pray for our Susan. We are not out of the woods yet.

Dad will post more once we have any updates.

- Rebecca

What Happened?

John here...

We have created this blog to update everyone who loves our Susan. As you can imagine, it is very tough to keep everyone up to date. Please check the blog often for updates and leave comments below. I will share all of your comments of well wishes with Susan as soon as I am able. My apologies for not returning the many voice mails still waiting to be answered, but time is precious and I need to be with Susan.

Here is what happened in a nutshell - pasted from an email sent on June 16.

After about ten days of "waiting for it to pass" and waiting for the antibiotic to work, we got Susan to Sibley hospital here in D.C. She was admitted Tuesday. Today she had emergency abdominal surgery. I'm writing this because my state of shock won't let me talk about it.

CT scan showed nothing. (The artificial hip stuff got in the way.) IV antibiotics didn't zap the bugs immediately. Thank God for good pain medications. She slept the whole night last night. Her breathing became labored. Her abdomen became distended; everyone thought this was the diverticulitis and drugs fighting. Not so. A chest Xray was done this AM. The doc saw something he didn't like. A "leak" showed up and triggered the set up of emergency surgery. About 2:10 the procedure was started. Some time around 5, the doc explained the situation.

This is what I understand. There was indeed a perforation of the colon up near the small intestine in what they call the secum. The colon was distended there, which put too much stress on the wall. So nasty stuff was sloshing around her other organs..... They looked further and found a tumor blocking the colon near the rectum. It was biopsied immediately Results probably Monday. The growth had adhered itself to her left pelvic bone, which meant the doc couldn't snip out the affected section of the colon and excise the whole tumor. He clamped off the colon above the tumor. On either side of the clamp he installed a colostomy tube. The lower one will act as a drain for the plugged part of the colon. The upper one will evacuate the feces she processes. He considers these temporary for now.

The hospital is fighting the infection, which is life threatening. When the biopsy report comes on Monday, the next steps will be planned.

Susan's sister Mary and bro in law Bob are enroute now. They will arrive tomorrow AM. My daughter Rebecca and spouse Frank are coming down leaving about 12:00 midnight. Becca has more than 10 years of dealing with hospitals. She will be a great advocate and support to me.

For those who know, my grand children, Alice and Ben, were on their flight to D.C. when this episode started today. David and Jeanne Argoff and the kid's dad Cory worked with the airline to redirect them at Atlanta back to Dallas. They get the gold star of the day. Share this with people you think need to know.

Enuf already. I need some food and to get back to the hospital to ensure that the ICU nurse clearly understands her overnight duties.

Calling or texting my cell is OK, but I would prefer you leave comments here. If you can't reach me, you can always try my daughter, Rebecca (908) 447-8126. Don 't bother with Susan's; it's turned off. I'll try to keep people updated.

All my love,