Recovery Day 12 Post She's Home!!!!!!

11/22/2010  1730  (05:30 PM)

Susan was discharged today about 1 PM. We got a great ride home on a partly sunny day with cool but pleasant temperature.  Of course the residents of VNNC were glad to see her.  She quickly took a nap for nearly 3 hours.  We won't be doing much different here than in the hospital.  Just being home makes all the difference needed.

I think I'll close down this blog now.  Thanks for caring and sharing.

Love,  John.

Recovery Day Seven Post

11/20/2010  2110  (09:10 PM)

Okay, I just felt like letting you know what's happening.  Susan has on her diamond ear rings and her own personal nightgown creatively adapted by Sistah Jo to work like hospital gowns.  She's wearing makeup and even cruised down to the cafeteria to have lunch with Mary today.  She's sleeping very soundly especially since she instituted the Do Not Enter after 10 PM or before 6 AM rule and posted it on her door.  The health care team at Sibley honors her requests.

Progress continues; nutrition is consumed.  Things look good enough to go home -- maybe tomorrow.  I'll be posting as soon as we know.

Love,  John.

Recovery Day Seven Post

11/18/2010  1110  (11:10 AM)

Wednesday was a busy day for Susan.  She is determined to follow the recovery regimen as designed by Dr. C.  She was up and in her wheelchair and doing a good job of eating.  She is managing her own medicine usage.  She did say she didn't want the dillaudid too often because she wants to stay awake.  Good sign.

Keeping her comfortable when she is in bed calls for creative lifting, stretching, twisting and propping up.  Susan manages us very well. 

From now on, posts will be made when there is news.

Love,  John.

Recovery Day Six Only Post

11/16/2010  1720  (5:20 PM)

Well, another day comes to a close.  Susan got up today, into her chair and stayed there for a couple of hours.  Dr. C. said "If you want to go home, you need to be up and out of bed."  We're really trying hard.  Susan is on a regular diet now and is beginning to like food.  She sent Pam down to the cafeteria at 6:30 because she couldn't wait for delivery.  That's a good sign.

After her time in her chair, she went back to bed and conked out for a couple of hours.  Then Boing!!!  She really woke up. She is really here.  She's sharp with conversation, humor, etc.  She ordered her own dinner tonight.  We'll see if she eats much.  Tomorrow is another day.

G'night.

Love,  John.

Recovery Day Five Only Post

11/15/2010  2320  (11:15 PM)

It's the last few minutes of my 1800-2400 time of caring today.  It's a slow slog through this foggy, fuzzy minded trip into wellness.  Progress continues.  Dr. C. is satisfied with it.  Susan is mostly resting.  She eats a bit here and there.  She drank 3 bottles of Ensure today.  Good stuff, I guess. . .

Hopefully, we will see increase in the rate of progress.  If we don't, we will continue to be patient and ever vigilant.

Thanks for caring and supporting this campaign.

G'night.

Love,  John.

Recovery Day Four Only Post

11/14/2010  1730  (5:30 PM)

Earlier this afternoon we moved from the ICU to room 524; it's a nice single room at the far end of the hall.  All of the monitors and tubes have been removed.  Susan is still receiving oxygen via a nose bud.  All medications will come via mouth or needle through the mainline still attached to her right side neck.

She had gone too long without a jolt of pain medicine; we had some serious crankiness complicated by a leaking urostemy. (ICU nurses really don't have a clue of how to do the install on Susan.  There are some curves and folds involved and another stoma too close by.  I've not forgotten that her main incision is also too close.  To make matters worse, the JP drain opening is in the same 10 inch circle.

The nurse on 5 tried to install it; it started leaking right away.  She attempted to stop the flow with some gauze and tape. NOT.  I sorted through the ostomy supplies and found a better solution.  The only problem is the nurse will have to empty it manually.  Before it was flowing down into a nice bedside container.  Tomorrow the ostomy pros will be back at work and they can work out the problem.  I told the nurse about the work around; she said ok in five minutes.  I waited five minutes and then did it myself.  careful application of the adhesive ring under the disc attached to the bag worked. fine.  So far so good.

Her dose of dilaudid has her resting now for more than three hours.  Her sister Mary will be coming to start her shift soon.  She'll be able to get Susan some real food from the anytime room service style food service. I'll be going home to a farafalle and hot sausage creation thanks to brother Harry.

Susan still has healing to do.  We are not thinking anything about going home, yet.  Soon Susan will start thinking about going home; we'll have to persuade her to be cool (like a Westside Story Jet after Tony was killed. Think of the song.)

Thanks for caring and supporting this campaign.

Love,  John.

Recovery Day Three Only Posting

11/1 1722 (5:22PM)

Susan's Care Team has started doing 6-hour shifts around the clock.  We'll do this until Susan feels less anxious about overnight mishaps that have unpleasant consequences. Things done under anesthesia should not have to be redone without anesthesia.  We also helping her stress her muscles, which will help get systems firing on all systems.  She has perfectly functioning kidneys. That's really good.  If all is correct, the nasal tube will come out at 1800.  There are even tentative plans for her to move back upstairs tomorrow.  We'll see. . .

Thank you for your caring support.

Love,  John.

Recovery Day Two PM Posting

11/12 2000 (8PM)

This experience continues to improve.  The "gurl" is coming along fine.  Tonight as I left her comfy and cozy with all special positioning done to relieve back, neck, knee, etc. discomfort, she was softly singing "Claire de Luna" (sp?).  Sh had just said to me, "Honey, I think I've licked this thing."  Her care team agrees.  We all are realistic however; there could be many other bumps on the road to enchantment.  The massive nature of the surgery leaves a myriad of possible problems.  The folks at Sibley Hospital are phenomenal.  Of course it helps when the patient frequently knows as much if not more about her care needs.  The M.D.s do the orders and the science.  The nursing and support staff execute the orders, AND they listen to Susan.  There will be some more ICU days thanks to the conserving nature of her doctor; she wants "nothing to get in the way of Susan's existence."

For the good of the good-hearted patient, Susan's care team has made an executive decision, with which the patient agrees.  We will not be receiving visitors at the hospital this time.  Susan is a GRITS and feels obliged to extend her most cordial self to all her callers whenever and wherever they appear.  Sister Mary, P.A. Pam and husband John are sparing her the work of the exhausting efforts such cordiality requires of her.  So, visitors can come see her when she comes home.

Tomorrow is Sat. The hospital almost shuts down.  There may not be much to say tomorrow or Sunday.  Check for sure on Monday.

Thank you for your caring support.

Love,  John.

Recovery Day Two

11/12 1030.

Good morning friends.  This beautiful autumn day greets us with positive news.  The X-ray, Ultra Sound, and nephrologist consult resulted in "Your kidneys are AOK."  The only deduction to be made is that Susan is severely dehydrated.  Saline is being pumped in at nearly a liter an hour.  Also, the professional ostomy nurse replaced the seal around the stoma so it won't leak.  Immediately, the bag started seeing product from the kidneys.

The Care Team is doing mostly skin stimulation; she itches mildly - NOT like the welts from June. We hope soon to get back to a regular room.  I'll let everyone know when I know something new. 

Thank you for your caring support.

Love,  John.

Recovery Day One

After a rocky start and getting the pain medicine at the right level, (SMD: "There is no excuse for post surgical pain!!!!") Susan has spent the day awake; she didn't sleep last night either.  Soon, she is going to konk out for a day. Breathing on her own shows good strength. Being unwilling to suffer foolish misapplication of 21st century medicine shows that she is driving her recovery bus.

Dr. C is very happy with the results of the surgery; medically, Susan is doing fine.  All the surgery related markers are good.

There is a bit of a problem with her kidneys; they seem to be a bit out of sorts.  Urine output is too low. There are several possible reasons for this.  An Xray of the stomach has been taken. A sonogram of the kidneys will be next.  A nephrologist has been consulted and will see her tomorrow.

More late. It is now 9:30 PM.  Time for Susan to sleep, finally.

John

John W. Watson

jwwatson11@verizon.net

3001 Veazey Trce., NW #633

Washington, DC 20009

Home:  202/363-8970

Fax:  363-0145

Cell:  489-9065

Blog:<http://watsoninwashington.blogspot.com/>

D.C. Events Calendar: <http://whatsoncity.net>

Recovery Day One

Just got the notice from sister Mary that Susan is off the ventilator.  She is wide awake and alert (and probably giving instructions.  Now we start the "get outa here" campaign. More later

 Love you.

John

Blog Update. Real Good News

Susan's surgery took 6 hours; it just finished about 4.  Dr. C. said she went through it very well (good vitals, respiration, etc.).  She'll be in ICU and intubated at least overnight.  Then it's up to her constitution to direct her recovery.  (2-4 weeks here.) We will be able to see her in a few minutes.  She is very, very asleep.  She needs the rest.

The process concluded as a success!  The parts removed were those planned.  The tumor gave the doctors a lot of "negative margins."  That means she thinks she got it all.  The tumor didn't act up like a sarcoma can.  There was no massive bleeding.  The ileostomy  was installed perfectly.  Dr. C. was very pleased with her stability and strength during the surgery.

Thank you for caring.  Make sure others know of this post.

 Love you.

John

Blog Update

It's now past 1500 (3PM).  We have had no messages; our group all agrees that no news is good news.  More later.

 

John W. Watson

Blog Update

The marathon has begun.  Susan rolled into the OR at 0845.  The surgery started at 0935.  Dr. C. briefed me about the details; they are numerous.  Let's just say this surgery will last 10 - 12 hours.

Susan was alert, well rested and as ready for the battle as she could be. Her doctor & her partner will be doing the whole procedure.  First of all, they will see with their eyes what is going on inside.  Then, they will start on their course.  We are now in the waiting mode.  Susan will awaken as if she had only dozed of for a minute.  Because of the length of the surgery she will be aided in breathing overnight.  In the ICU she will get excellent care.

That's about all we know right now.  I promise I will post soon after I learn something from the OR as the procedures happen.  The doctors will send out messages, probably via a PA or Nurse.  Until then, thank you for caring.

 

John W. Watson

Update.

Thursday, Oct. 21:  Susan and John rode with Gale May, our favorite accessible taxi owner, at 0500 to Sibley Hospital.  We started compiling "wait minutes." Before 0735, when the wonderful surgical team rolled Susan into the operating suite, there were way more wait minutes than act minutes. Go figure. . .

 

I was following the doctor's instruction:  I went to get breakfast. Mary, Pam and Bob were coming a bit later.  Before I was able to eat one half of a muffin, Dr. Palmer the oncological surgeon came up to my table and said "Dr. Chernofsky and I cannot do what we planned.  Let me find her and let's talk."  Thus began a completely new chapter in this saga.

 

After sedation, Susan was given a physical exam under anesthesia; the urologist prepared to insert stents that light up so the urethras can be seen as the surgeons dive in.  Whoa!!!!!  What the doctors had planned and counseled Susan and me about (risks, plans, goals, etc.) was not what they discovered to be the physical state.  So, Susan was allowed to come up out of anesthesia and we waited again for another CAT scan.  It was done about noon; then we had a family conference with Dr. Chernofsky.

 

Friday, Oct. 22:  Here's the plan: new date:  11/10 and time: 8:30.

 

Love to all of you caring friends, John. 

Day One Phase Three

Well, here we are. We are nearly 10 weeks post surgery. Susan is strong and vibrant -- living life fully every day.  I am so happy to have her in my life.

Today, as we exited a Metro Bus at Friendship Heights on our way to a lovely lunch, Susan said, "I'm finally feeling that I'm going to live through this." Our good friend, Sister Jo, said "Well, if Susan has decided that she will, she will."  The three of us kept an appointment with Dr. C. (Chernofsky -- but its too long to write).  This doc is the epitome of the "best doctor" you could want; she is warm, she is thorough and detailed. WE (especially Susan) really like her.

The bottom line:  there will be another surgery on October 21st (firm).  Susan will be "out of pocket" for probably 4 weeks after that.  Dr. C says, "I think we can lick this thing."  Definitive answers to our questions (and yours too) cannot be given until Dr. C and the pathologists have the whole mass in their hands.  There are four complicated scenarios for this situation; let this suffice here on the blog: the surgery will begin and then the course to take will be chosen when the doctors are inside.

Until there is more to say, "Keep on Truckin".

John

From Susan on 9/6/10:

Last week I saw Dr. Mildred Chernofsky, gynecologic oncologist and pelvic surgeon.  John and Jo Vaughn, an old friend from Chapel Hill days, went with me.  My next surgery is scheduled for Thursday, October 21 at Sibley Memorial Hospital.  Dr. Chernofsky said that my healing from surgery in June is remarkable and I appear to be wonderfully healthy.  After the examination, Dr. Chernofsky said that the tumor showed no evidence of change or growth or intrusion into other organs.  The tumor is located below the tailbone near the artery leading to the legs, pressing on the colon.

Despite the report of the oncologists at Sibley and the Mayo Clinic, they won't know for certain the structure of the tumor until it is removed and examined.  Dr. Chernofsky can assess collateral tissue damage when the tumor is removed. 

There are variables, which have different outcomes.  Best case – tumor is contained with no lymph node involvement and the colostomy can be removed.  Dr. Palmer, who operated in June, will be with Dr. Chernofsky in surgery to do this, if necessary. 

Dr. Chernofsky described the growth as a laconic adenosarcoma that usually stays put, but there is a 50% chance that the tumor might grow back.  I will be intubated for surgery and will recover in the ICU. My favorable impression of Dr. Chernofsky as confident, determined, and competent, was confirmed and strengthened.  I am fortunate to have Dr. Chernofsky in charge of my treatment.

Mary (sister)and Bob (Bro-in-law) will come here the day before surgery as well as Harry (Bro).  Their comfort and support has been immeasurable to me and I believe partly responsible for my recovery thus far.

I realize the seriousness of my situation, and I am optimistic, hopeful, and eager to move ahead.  John will restart the blog after Oct 21.

Susan's Posting on her FaceBook page.

Reprinted from Susan Daniels' Facebook page:

As many of you already know, in mid June I was hit by a wicked abdominal mishap that landed me in the hospital for almost a month. I have been home for over three
weeks now and my recuperation is moving along better than expected.  From time to time I'll give you further updates.

I am delighted to give a special note of gratitude to my family and friends who took care of me so well and who showed me so much love and support - -you know who you are and I will never forget you.

With Love, Susan

Day 7 Phase 2 Important Diagnostic and Treatment facts

There is important news. Careful thought has gone into this post; I don't want anyone to suffer "tmi." I want readers to understand the content.  Here goes.

Dr. C (Chernofsky is too long to type out every time.) gave us a comprehensive explanation of the situation and the course to follow:  get stronger and do surgery in, say, the third week of Sept.  This an "endometrial" sarcoma.  It started in some uterine material left over from the total hysterectomy performed 24 years ago. Dr. C said there was some other tissue there too; she said "sarcoma." This is complex.  My messages cannot be considered the absolute truth or "audit-able." Dr. C did say that this type does not respond to Chemotherapy.  Therefore, no chemo currently planned.  

We see the surgeon tomorrow morning.  It's a follow up from the surgery. I'll report on that tomorrow.

Susan is up and active more each day. She is getting good nutrition. No supplements have been started.  I imagine there will be some used soon.  She takes naps both in her tilt back "Mazerati-grade" wheel chair and in her bed.  We are still screening calls; it's hard on her to engage in chats.  Messages via Email are easier on her.  

Day 5 Phase 2 More normality each day

Susan is doing better and better each day.  She had her first real shower today; she loved it but it was tiring.  She's now resting (zzzz'n away).  She is up much more of the day than in the past.  She slept very soundly last night with no trouble going to sleep.  The colostomy is becoming routine.  When we get the products we want tomorrow from the provider, we'll be in like Flynn.  (Who's Flynn, anyway?)  The materials will be totally covered by Medicare and GEHA. We have been blessed with the Federal Employees Health Program for the rest of our lives.  There is no need for (nor wish by the recuperating one) for Nursing service; pieces are healing nicely.

Jo and Michelle, two of Susan's oldest friends from UNC days, were here from Thursday through Monday.  They fired me and Pam as PA's for Sat. & Sun.  Pam had two days off after 22 days with one day off. I actually played 18 holes of golf and enjoyed it tremendously. We have doc appts Wednesday for medical oncologist and Friday for surgeon.  The gynecological oncologist is trying to get us on the phone.  Tele tag with docs is even harder than with us regular peeps.  I think she has the pathology report from Mayo.  And the Louisiana hospital apologized that post Katrina flooding destroyed >400k records. Susan's was surely one of them.

I apologize for not posting every day; I will post when we have some news to distribute. So, if you don't see a post it means nothing dramatic is happening.  If you are a "follower" of the blog, I think you will get a notice when a post is made. Not sure if that's correct; it seems logical.

And so it goes. . .

Love, John

Day 2 Phase 2 July 10, 2010

A day that begun with waking up to a gently falling rain; something has changed in our weather.  The blast furnace, the Greek Steam Bath gone berserk on steroids has gone away.  Opening the patio door this morning after waking at 7 was wonderful.  No blast of steam or radiant heat.  Mother Nature smiled on D.C. today.

Jo and Michelle came to be caregivers to their Sistah Susan.  They fired me.  I couldn't do anything for Susan except give her kisses and hugs.  These old friends know how to do everything.  I am posting at nearly 10 PM.  I'll be sleeping within 30 minutes.  Healing and strengthening is happening every day.

Love to all of you. John.

Fwd: Day 2 Phase 2 July 9, 2010

From: John Watson <jwwatson11@verizon.net>

Date: July 9, 2010 10:12:55 PM EDT

To: John Watson <jwwatson11@verizon.net>

Subject: Day 2 Phase 2 July 9, 2010

A wonderful quiet day was spent at home --- really at home.  Old Friends Jo and Michelle were here to do lots of practical assistance and even more spirit raising. These two women have known Susan for at least 120 years.

Friend and colleague Lisa Eckman brought a huge dinner over, which was chicken parmesan and eggplant parmesan with at least 2 gallons of homemade chicken noodle soup for Susan.  There won't be a need (or space) for any more dinners brought in for several days.  Pam gets a day off tomorrow; second one in 25 days.  Is she to  be adored, or what. Adored, cherished, honored and loved deeply.

Now it's time to lay me down to sleep perchance to NOT dream.  We'll see. . . . John

Day 1 Phase 2-July 9, 2010

When the scene shifted from Sibley Hospital to HOME, the whole screen play changed.

Transport was via accessible cab thanks to Gale May, who should be used by anyone visiting D.C. -- wheel chair or not.  Being discharged was a bit of a tiring exercise.  No matter how well you work to have things move at a moderate pace (can't wish for fast), a person winds up waiting...waiting...waiting. Finally, on went the blue knit dress, about which Susan noted "I haven't seen this dress for a while."  

At home the primary care team (Mary, Bob, Pan and me) shifted into a different kind of work.  I zipped to the pharmacy and grocery to get the helpful meds and some "proper" food for Susan.  Mary and Pam helped her from chair to her own bed (Tempurpaedic Topper and rising head and feet).  Soon she had her TV and bed remote in her control. I fed her a few bites and sips.  Then she went to sleep.

Mary and Bob began their preparations to return to their regular life.  Pam zipped off to Baltimore and into her regular life.  Later in the afternoon, two of Susan's oldest friends (not in year of age but years of friendship) rang the bell after having requested and received permission to come aboard. Jo Vaughan and Michelle Morgan had come from Sacramento and the mountains of New Mexico to see their dear Sistah.  If anyone of y'all (not family) have known Susan since before the early 1970s let me know.  You can be one of the "oldest" too. :)  The joy and pleasure of their visit lifted Susan's spirits high, high, high.  She said she feels "lifted up by so many caring hands."

A quiet evening ended early for all. M&B took off to NC to get south of Richmond before over nighting; they miss any and all rush hours and have an easy cruise back home.  Michelle and Jo were settled into a hotel near Dupont Circle.  They will be returning today.

I found myself sleeping until 7 this AM.  I've gotten used to the 5 AM rising but sure appreciated the extra ZZZZ time.

More in my next post.  John

Day 24. Liberation coming today.

Finally, Dr. Palmer has decided enough is enough. Right now, 0915, Susan is having a tube check.  If there is no dye in the small intestine, pop -- out it comes.  If there is some dye, we are still going home.

I will post later today from HOME!!! Love to all.  Thank you for your thoughts and prayers.

The campaign to get Susan stronger continues.  John.

Day 23. At last some action BUT more waiting.

This AM Susan's surgeon, Dr. Palmer, visited her room.  He removed the stitches and the "bungy cords" on her incision.  He said the left side ostemy can be covered with a bandage instead of a bag.  He ordered a tube check.  Radiology was extra busy but they would try to fit her in.  It didn't happen.  We all waited and were disappointed.  Susan enjoyed her "full liquid diet." NOT!!!! After tucking her in tonight, she said: "Go to the cafeteria on your way in and bring me some grits, butter salt & pepper and coffee for breakfast." She has begun to take control of her life, and still, she is patient with the confinement knowing she is getting great nursing care and family love.  She'd rather be in Sibley than elsewhere with IV stuff in her.

If the tube check shows no dye in the small intestine, it will be disconnected and a 24 hour count down will start toward her discharge.  If not, we'll have a heart to heart with the surgeon and not accept any more waiting for a surgeon's inadvertent error to correct itself.  I said it.  I believe it.

With love to all,

John 

Day 22 another day of ennui

Well, we were up early with complete bath and hair shampoo. We waited to be called to radiology for a tube check.  NOT!!!! It was not ordered last Friday -- the last day Susan saw any of her doctor's team.  So we waited patiently, sort of.

Dr. Palmer, the surgeon, came in finally about 6 PM.  He didn't spend any time with us.  He only said "you can eat full liquids."  (He actually had to rush down to surgery.)  

So, we immediately ordered some of that wonderful liquid food. Don't ask.  It will probably not be a bowl of red beans and rice, or a sautéed soft shell crab with hollandaise sauce. Don't we wish.

More on this long epic tomorrow.

Good night with love.  John

Day 21 Tick Tock Tick Tock

Saturday and Sunday were seriously "wait" days.  The only medical treatment Susan is having is "wait."  Not much difficult about that.  We did have the pleasant company of Jerrilyn and Tim Herd, who passed through here on their way to the Big Apple.  Jerrilyn took care of Susan for the whole day on Sunday.  Then she came to my place and made us all a delicious dinner.

Today?  What else: wait.  Susan was serious about the getting stronger today; she slept  quite a bit.  The itching seems to be subsiding.  Her antihistamine and hydrocortisone cream are working and her system is getting cleaned out of all the chemicals modern medicine has been putting in her. 

Tomorrow we are anticipating another tube check.  We don't know if it has been ordered yet.  It would be nice to have it early in the day.  That's probably wishful thinking.

Mary and I and Susan have decided that visitors take too much out of her.  So, no one should visit her in the hospital.  If all goes well, she should go home tomorrow or Wed.

And so it goes. . . Love to all, John.

Addendum

When I came in to the waiting room, Mary and Bob hailed me. Susan was
in the radiology world getting the tube text. She came back few
minutes later saying there was still a trace of dye going into the
small intestine. No word from the doctor. So, we are here.
John

Day 18 and still waiting, waiting, waiting. . .

The surgeon told us last night that there would be a tube check tomorrow (Fri).  We were all waiting to be called down to radiology.  Then we learned it was just this morning ordered by the doctor for ASAP.  The radiology lab said they will try to squeeze her in. The first one was Monday.  The fistula was definitely connected to the small intestine.  A dye is squirted (probably not a medical term but that's what they do) into the tube. And then the radiologist looks at a screen to see if the dye goes into the intestine. If so, it and the tube are still connected.  The drain is collecting only a tiny amount -- if any.  Should the tube check show no connection, boom!!!!  We're outta here!  No one has their hopes up.

Flash:  as of 3:15, there has been no tube check.

The days seem to crawl very slowly.  Of course if all you can do is watch day time TV, it will seem endless.  Susan has begun joining Pam in viewing the "judge" shows and the Jerry Springer wannabes.  They are hilarious and clearly demonstrate the vast and deep level of ignorance in some of humanity.  Today Susan has been up (in her chair) since 6:30 AM.  She had some strawberry pink rash places around her body.  The cream and a dose of antihistamine plus a pain pill seems to have alleviated the morning's discomfort.

You all may be wondering what the life of a care giver is like. I truly hope you have more important things to think about.  I'm doing a split shift; I help get Susan up out of bed about 7.  When Pam arrives about 8, she takes over for the ADLs.  Then Mary and Bob arrive before 9.  Unless we are expecting something to happen soon, I leave Pam and Mary and Bob in charge.  I return for a 4:00 to bedtime tour of duty.  I help her into bed and adjust all the pieces.  Pam leaves in the early afternoon as soon as the personal care chores are done.  Mary and Bob stay until 4, and then they have the afternoon and evening off.  None of us are hooting with the owls at midnight. I guess we're too old for that.

Today, Susan had her hair shampooed by Mary and Pam using Mary's Japan method. A tiny amount of shampoo is diluted in water, agitated and applied very sparingly.  Suds it up and scrub.  Then a wipe off and a rinse.  Mary uses a ketchup squeeze bottle for both the shampoo and the rinse.  Towels catch any run off. This controls the water volume. Voila! A quaff to be proud of.  

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

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

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. 

John. 

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

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.
John

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

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

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.

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.
John

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.

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.

Fondly,
Rebecca

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

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,
John

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,
John