Day 31

Cindy's Respiratory Therapist surprised us today and took her off the ventilator and hooked the trachea directly to Oxygen.  This is a huge step.  She was able to breathe without any problems.  She was put back on the ventilator after 4 hours so as to not tax her breathing for too long.  She will repeat this process tomorrow for 4 - 6 hours.

I

Day 30

Today Cindy had Physical and Speech Therapy.  She did very well with both.  The Physical Therapist says she is getting stronger.

The Pulmonary Doctor continues to wean her off the trachea.

This picture is from December 14th, 2008.  It was submitted by Nike.

Day 29

Happy Thanksgivingukah

Drawing by Pauline Moreno

Day 28

Cindy started the day off with Physical and Speech Therapies.  She worked really hard at both and is getting stronger.  The Pulmonary doctor started to wean her off the trachea after giving her a rest for the last two days.  This afternoon, Cindy was moved out of ICU into a regular room.  She also started Occupational Therapy.

HAPPY CHANUKAH!!!!

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 27

Debbie met Cindy at Kindred - the Long Term Care facility as she arrived there in an ambulance.  Debbie was on the phone with their Aunt Sandy who was able to talk to Cindy when she was being wheeled into the hospital.  She was poked and prodded when she was admitted to her room just to get baseline stats.

Cindy has settled into Kindred wonderfully.  The staff are great.  They are very caring and gentle.  Cindy started Physical Therapy at bedside today and also had Speech Therapy.  The Speech Therapist showed her how to use a special device that she can use for talking.  It makes her sound like a robot.

Image from http://bme240.eng.uci.edu/students/06s/paytonl/CurrentTherapies.html

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 26

Cindy is being transferred from John Muir Hospital to Kindred Hospital.  Kindred is a Long Term Acute Care hospital where they will continue to wean Cindy off of the trachea and continue helping her with her recovery.

This is a BIG STEP!!!

Kindred Hospital

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

And don't forget to send stories and pictures to debra.lobel@gmail.com.

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Day 25

Today is a resting day.  The staff has decided that Cindy's goal for the next two days is to be comfortable and in less pain.  That means that she is not breathing on her own as much as she had been.  The breathing machine is helping her with her breathing again  Breathing on her can be very tiring and she needs a little break.

Cindy's temperment is very good.  She likes joking around and is becoming very social.  She is able to write a little and finding other ways to communicate.  When people visit her, she makes sure that everyone knows each other.  Since Cindy can't help anyone, she tries to match everyone's skill with other people's needs.

Tomorrow, Rita, Mary and Debbie are going to check out a Long Term Care facility.

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 24

WEVE MOVED from the ICU to the Neuroscience Stepdown.  Cindy was stable enough to move out of the ICU.  This is great news.  She continues to be weaned off the Ventilator machine.

ICU Corridor

Corridor to Neurosciences Stepdown

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 23

Cindy continues to improve.  his morning she was anxious and curious as to what happened and what was going to happen.  I explained to her the overall sequence of events over the last few weeks and the plan for the future.  She is stable and is still getting weaned from the breathing machine.

Rita and Debbie usually take a 3 mile walk on the Ironhorse trail at 3 PM everyday while the ICU staff does their reports and no visitors are allowed in ICU.  We haven't been able to take our wals because we've been having rain and heavy winds for the last few days.    Today is much nicer and we have lue skies, so we're going for our walk today.

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 22

Cindy continues to improve.  She is still in the ICU.  She has started physical therapy for bed  movements.  She is able to sit in a gurney chair and can tolerate it for a few hours.  Because of the trachea, Cindy can't talk yet.  We've tried to devise alphabet charts for pointing.  She can also mouth words and can make herself understandable.

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 21

Check out the new story in Memory Lane - Stories from Fran Cox.


Cindy slept well last night.  The plan for today is to wean Cindy off the breathing machine.  To do that they need to keep Cindy sedated just enough to stay awake but not agitated.  She is very sensitive to sedation and pain killers.  They put her to sleep.  The doctor would like someone to be with her today to make sure she stays calm.

Visitor Badge - You need to check in every day.  It's like being in a hotel.  

Near term goals include:

     Moving Cindy out of ICU to the Stepdown
     Moving Cindy to an After Care facility

An observation:

You know you've been at the hospital too long when:

• The people at the front desk now which room number you're going to.
• The guards ask you how Cindy is
• The nurses know your personal history
• You know the code to the staff bathroom
• You give other visitors directions and advice
• You are tired of hospital food
• You know the people in the waiting room on a first name basis, their children's names, their problems, why they're here and what they've had for lunch.

I'll update this blog with any new information as we get it.

Until then:

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

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Day 20

Check out the new story in Memory Lane - Stories from Jeff Cohen.

Cindy struggled a little with her breathing yesterday.  It was scary for those of us visiting (Rita, Mary and Debbie) but the medical team got her back into shape.  With a little sedation and pain killer, Cindy was sleeping like a baby.  She was stable all night. Her tracheotomy is happening at 9:30 AM (Pacific) today.

Image from Mayo Clinic

Cindy got back to her room around11:30 AM Pacific today.  It is now noon and Rita and I are with her.  The procedure went very well.  The ventilator tube is out of her mousth.  There is a small tube in her neck that is MUCH smaller than the ventilator tube.  Cindy is sleeping comfortably.  The trachea is connected to the monitor.  She is on Assist Control.

The best part of the trachea is that weaning her from being dependant from the mahine that helps her breath will be much easier.  Since nothing is in her mouth, she will be able to at least mouth words.  Her face even looks more relaxed.


Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

And don't forget to send stories and pictures to debra.lobel@gmail.com.

You can also leave a comment at the end of the post.

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Day 19

I'm going to start posting in the morning (Pacific time) and update the daily post if needed.

Cindy had a good night.  Dr. Cheung (pulmonary specialist and Cindy's primary doctor right now)  came in to see her today and was impressed with her weight loss and the progress she made with the ventilator over the weekend.  She believes that Cindy will need another week before she can breath on her own, so she is calling Dr. Chen to see if he can do the tracheotomy.  Dr. Chen has worked with Cindy when she was in the hospital last year, so he knows her situation.  Remember that the ventilator tube that Cindy is using now is not a good idea to use for more than two weeks which was this past Saturday.  The tracheotomy is not permanent.  Cindy might be able to talk and eat by mouth.  The tracheotomy is scheduled for tomorrow at 9:40 am.
 

More good news.  Dr. Cheung is also ordering Physical Therapy (also called PT).  That will help Cindy regain her mobility.  She is able to move her arms, legs and shoulders but doesn't have much strength.  She can't squeeze your hand or push down with her feet.  The Physical Therapist will help her get back into shape.
 

Image from Wikipedia

Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

And don't forget to send stories and pictures to debra.lobel@gmail.com.

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Day 18

Cindy continues to attempt to breathe on her own as best she can.  The process is slow but steady.

Tests were done to make sure that her digestive system is good.  All is A-OK.

Cindy's childhood friend, Nike was here for the weekend and left today to go back to Los Angeles.  But first, she left Cindy a piece of art work on her Daily Board in her room:

The following is a text message from my cousin Amy.  It is dedicated to Cindy's patience:

"Hi Debbie. I loved yesterday's blog because it was beautiful, poignant, sad, and funny! Not only does it tell how Cindy keeps doing better and is working so hard with her recovery (Yaaah!!!) but also made me sad thinking of your mom as well as sad again how right now Cindy isn't able to "deal with" my mom. It made me laugh and was funny to me because of what you said about my mom not getting any of what you were explaining about seeing the blog, etc. and your losing patience. I'm going to use your trick to help me - I'll pretend I'm Cindy when I talk with my mom! "

My partner, Pauline, asks me how Cindy is every day.  I tell her she can check the blog like everyone else.  She says she can just ask me.  I get insulted.  She says:

"Ok.  I'll call Aunt Sandy and ask her how to access the blog.  How about that?"

Rita carries around Cindy's phone.  It rings constantly all day long.  The caller at the other end of the conversation usually needs Cindy's help,  When they find out that she is incapacitated, they tell Rita they hope she feels better and often tell her that they are lost without her.   Then they proceed to ask Rita to help.  She begs ignorance and gets off the phone and screams:

"Cindy!  How do you take care of all these people!!!"



Check out the Memory Lane - Pictures and Memory Lane - Stories pages on the right side of the blog.   There is also a new page called Talkies.  You can create a You Tube video and send me the link at debra.lobel@gmail.com.

And don't forget to send stories and pictures to debra.lobel@gmail.com.

You can also leave a comment at the end of the post.

Day 17

Cindy had a good night.  She was working very hard to be weaned off the ventilator.  It was on Spontaneous mode.  Late this morning, her heart rate and blood pressure went up.  She started to get agiated and the ventilator was adjusted to Assist mode so she could get a break.  This was just a minor set back.  Cindy slept most of the day.  Late this evening, the ventilator was reset to Spontaneous.

The doctors were talking today to try to decide if she should remain on the ventilator or do a tracheotomy.  We will be meeing with the team of doctors either Monday or Tuesday.

The nasaal feeding tube is working well.  The TPN feeding was stopped yesterday.  Her digestive system is working well.  The picture below is what Cindy has for breakfast, lunch and dinner.  Sometimes she has a midnight snack from this container, too.  The picture is not upside down.  This is the way it hangs.  It is attached to the nasal tube.

Check out the Memory Lane pages on the right side of the blog.  And don't forget to send stories and pictures to debra.lobel@gmail.com or you can leave a comment at the end of the post.

Day 16

Nothing but good news today.  Cindy was doing her best to get herself weaned off the ventilator by initiating the breathes of the ventilator.  This is done by setting the ventilator to Spontaneous mode.  Several times during the day, she struggled with her breathing and getting enough oxygen.  They had to give her breaks throughout the day and put the ventilator on Assist mode so the ventilator did all the work.  The green 'A' in the machine below shows the ventilator in Assist mode.  It can be set to 'S' mode which puts it in Spontaneous mode.

This is actually the machine that Cindy is using.

The doctors are trying to get her totally weaned off the ventilator by the end of the weekend.  They do not want to have to do a tracheotomty.  The ventilator should be used no more than 2 weeks (which is tomorrow).  Cindy is literally trying really hard and wee're rooting for her.

Since Debbie is the administrator of this blog, she is going to tell this story:

Last night, Debbie called her Aunt Sandy to make sure she could see where her picture was posted on this site (Memory Lane - Pictures).   She was getting the link via text messaging, but didn't know that it linked to this blog.  Long story short, it took 45 minutes to get her to get to the site and see this blog for the first time.  Needless to say, Debbie's blood pressure skyrocketed.  Sandy apologized and said "doesn't this remind you of your mother"?  Debbie didn't have patience with her mother and was running out of patience with her aunt.  Dealing with her mother was left to Cindy.  Debbie was about to tell her aunt to call Cindy and realized that wasn't possible.

Aunt Sandy sent the following email:

THANK YOU FOR YOUR TIME, PATIENCE, LOVE, UNDERSTANDING – AND

FOR BEING YOU.   XXXXXXXXXXXXXXXXOOOOOOOOOOOOOOOOOO

Debbie responded:

That's not really me.  I had to make believe I was Cindy.  She has all the patience.  

Debbie told this story to Cindy this morning.  It gave her a huge smile.

Day 15

This is the 2 week anniversary of Cindy's medical crisis.  Mary (see picture below) brought her to the ER two weeks ago today.  It was Halloween and things in the ER were pretty frightening.   Thankfully, things have changed.

Cindy has been able to "communicate" by nodding, shaking of the head, smiling, raising her eyebrows,  and other interesting facial expressions.  The doctor is thrilled as we all are.  The doctor is so thrilled she decided to try to have the nasal feeding tube inserted into her stomach again.  This procedure had failed a few times in the past few weeks.  The medical team thought it would be better for Cindy so her digestive system would not stop working.  The tube was inserted at bedside using an endoscope (see picture below).

Image from Wikipedia

This time the doctor was able to insert the tube in 15 minutes.

 

Mary and Rita in waiting room waiting for Endoscopy to be finished.

Cindy's childhood friend Nike came to visit from L.A..  They played 20 questions.  It was lopsided, with Nike asking all the questions.  Hopefully, Cindy will get a turn soon.

Check out the Memory Lane pages on the right side of the blog.  And don't forget to send stories and pictures to debra.lobel@gmail.com.

Day 14

When Rita arrived at the hospital today, the primary doctor came running after her to tell her that Cindy is responsive.  The doctor was thrilled.  Her exact words were "This is a good day."   Coming from a cautious doctor, this was excellent news.   Cindy was able to look at the doctor when the doctor called her name and was able to nod her head when the doctor asked her a question.

Dr. Debbie is going to take a little credit here.  She suggested that they remove the Fentanyl drip so she can wake up.  They did that and Voila!  She is doing better (but still not out of the woods).

Cindy is not on any medication.  That includes no pain killer and no sedation.  She is able to keep her Blood pressure up without medication.  She is Breathing partially on her own.  She can initiate the ventilator to breathe.  The ventilator is also expanding her lungs after each breath so her oxygen saturation improves.

Cindy responded to Debbie, Rita and Mary when spoken to but seemed confused at times.  Tonight she was able to sit in a chair for about an hour.  That is GREAT progress.

This is Tammy's card to her Aunt Cindy.  That's a picture of Cindy as Superman because she has super powers.

Tammy's rendition of Cindy as Superman

Debbie's conversation with Cindy:

"Are you in pain"?  Shakes her head no,

"Headache"?  Shakes her head no,

"Dizzy"?  Shakes her head no.

"Am I being a pain the in the neck"?  Nods her head yes.

Text conversation with Phedra after she finds out that Cindy is responsive:

Phedra:  "You need to remind her that I want my Leslie Gore records back."

Debbue:  "I gave Cindy your message.  She nodded her head yes."

Phedra:  "Sure!  Like she means it!  I'm gonna have to get out there and beat her up.  In the meantime, plant a little kiss on her, will you"?

Don't forget to look at the Memory Lane Pages and send me your pictures and stories at debra.lobel@gmail.com.

Day 13

Cindy is not sedated anymore.  However, she is also not very responsive.  The doctors decided to make sure there was no brain damage, so they did a CAT scan.  Thankfully, everything is OK.  The hospital doctor said he might want to an MRI on her head just to make sure.

Cindy remains in critical condition in ICU.

Rita, Mary and I met with a team of doctors including her primary doctor, 2 palliative doctors, the hospital doctor, 2 social workers and her nurse from today.  They went over the plan they have for her recovery.  

The biggest problem is the hiatal hernia.  They cannot do anything about it while she is in her current condition.

She is not responsive right now.  We suggested that they stop giving her Fentanyl which is a narcotic for pain.  Cindy takes a long time to "wake up" from medications like that.

The right side of her heart is not strong and isn't working at 100%

She is getting nutrition through and IV.  They would like to get her nutrition into her stomach.  They might place a feeding tube into her stomach next week.

There were a few sources of infections.

     Urinary tract from the Foley catheter.  It was finally changed after 10 days.
     Found bacteria in sputum
     Bacteria found in Triple Lumen line from dialysis
     

The ventilator is still helping her breathe.  If she is still on a ventilator on Monday, they might do a tracheotomy.  This would be a surgical procedure where an incision is made in the next to open an airway directly to the trachea.  It is not a permanent tube.

Her kidneys are working fine.

There is no prognosis for Cindy.  They are taking things one day at a time.

Don't forget to check out the Memory Lane pages and send in you pictures and stories for her.

Day 12

Here's a brief wrap-up for today:

Cindy remains in ICU in critical condition and on life support.  The ventilator is still breathing for her and she continues to be fed via an IV.  She is being kept sedated and is not aware of what is going on.   

Progress continues to be slow.  It is mixed with some obstacles.  Things get confusing.

Her kidneys are working again and she is not on dialysis anymore.  

 

The infections disease doctor thinks she might have an infection in her blood.  Thankfully, she is already on antibiotics.  Her white blood cell count continues to go down.

On Tuesday, Rita and Debbie are having a meeting with the doctors to find out what their plan is.

Day 11

We woke to some good news today.  Cindy had a good night and is improving.

Don't forget how Cindy likes to be the social butterfly.  Please send your favorite story and/or pictures for this blog.  Make sure you check out the pictures and stories on the Memory Lane pages.  You can get to them by the links on the right.

• Her lungs sound better.
• Her oxygen setting level on the ventilator was lowered to 50% which means the ventilator is only giving her 50% of her oxygen.  The other 50% is on her own.  Big improvement.

Ventilator in action - Image from hnibi.nih.gov

• She is less sedated.
• She is now being fed (TPN via PICC)
• Her Blood Pressure medication has been reduced.
• She is urinating - kidneys working.  She won't be having dialysis today and no diuretics to she how her kidneys function.
• White blood cell count went from 24000 to 17000

Cindy has been getting lots of prayers.

A Rabbi came in to do a m'sheberach.  Her blood pressure dropped.

Cousin Cliff is putting her on his shul's m'sheberach list.

Rita prays the Rosary morning and night.

Lucy, Rita's mom, and her friends pray the Rosary when they are at the hospital.

Everyone is 'virtually' praying for her.

Nike says that Mercury is going direct!  Three day wobble but she is out of the astrological woods!

I think Cindy is in good shape, spiritually.

Homemade card from Edgar

On the wall in her room

Taped to her bed

Debbie in gown and gloves

Day 10

After a slight setback yesterday and the scare of not being able to find her this morning, things were more stable this morning.  The kidney doctor came in.  He said they weren't going to be doing dialysis this weekend to watch her output and see how her kidneys are working.  So far, she is in good shape in that department.

He also said that she has lost 42 pounds (in fluid) since she's been in the hospital.  That is the around the amount of fluid they thought she might have had in her body.

The nasal feeding tube that was wrapped in her hernia was removed.  She responded with a grouchy face and her blood pressure, which was low, slowly went up.  After nine days, she will finally be fed TPM style through the PICC line tonight.  Hopefully, she will feel better and have more energy.

Cindy looks healthy - except for the gazillion tubes that are going in and out of her.  She remains sedated so communication isn't happening.  The nurses say she can hear us, so we're encouraging her on to recovery.

Cindy's white blood cell count is high tonight and probably has an infection..  She is receiving antibiotics.  They have taken blood to see what kind of infection she has.

Please don't forget to send pictures and stories.  You know Cindy.  She loves socializing.

Day 9

Cindy had a difficult day on Thursday November 8th.  Her blood pressure fluctuated a good part of the day.  She also wasn't getting enough oxygen and was not breathing on her own at all.  While she was on dialysis, her blood pressure, and dialysis was canceled for the day.

A PICC (periphally inserted central catheter) is an IV that can be used for a long period of time.  Cindy had one inserted today.  It can be used for medications or for total parenteral nutrition (TPN).

The doctor tried to insert a feeding down her nasal passage.  Unfortunately, the tube went into the hernia and curled in there.  The doctor is hoping it will 'snake' it's way out.  The radiology team is going to try to put the tube where it needs to be.  If that is unsuccessful, they will probably use the PICC line for feeding.

Rita called the ICU this morning to get an update on Cindy.  They told her they couldn't find her and asked if she was a patient.  Then there was an "oh here she is".  Talk about freaking out!!!  When they did find her, this morning's status is 'slight improvement'.

Can you spot Cindy in this picture?  No cheating, Fran Pandolfo (that's who you were then).

If you have a favorite picture or story of Cindy, please send it to me (or Rita) so we can all enjoy it.

Recap of Week 1

Cindy went to the emergency room on October 31, 2013.  She was having difficulty breathing, couldn't walk well, and was retaining fluids.  Her whole body was very swollen.  They admitted her that night.  They determined that she was in heart and renal failure.  The right side of heart wasn't strong enough pump blood to her kidneys.  Her kidneys weren't working.  That caused the fluid buildup.  They tried giving her diuretics, but that didn't do anything. 

The first thing they needed to do was to remove the fluid that was on and in her organs.  The total amount of extra fluid in her body was about 50 - 60 pounds.  The fluid had to be removed using dialysis.  A triple lumen catheter was inserted into her neck on Friday to minimize the amount of poking they would have to do her veins.  Each of the three catheters are hollow tubes where the staff can draw blood, administer medications or fluids and, in Cindy's case, do the dialysis.  Inserting the catheter was complicated due to the fluid in here system. 

Image from SmartDraw.com

Most of her labs were good on Friday.  Her blood pressure kept dropping, so they had to give her dopamine for that.  Dopamine can only be administered in ICU, so she was scheduled to be transferred there.  Dialysis was due to start on Saturday.

Early Saturday morning Cindy went into respiratory failure.  That means that not enough oxygen was able to pass from her lungs to her blood nor could her lungs couldn't properly remove carbon dioxide.  She had a tube inserted into her trachea to help her breath. She was also sedated with Propofol (the Michael Jackson recreational drug of choice).

Image from Wikipedia

Dialysis started Sunday morning is being performed every day until the liquid has been removed.  Between Sunday and Thursday, approximately 35 pounds of fluid was removed.  A lot of her swelling has gone down and she looks much better..Her kidneys are also working and she is able to urinate via a foley catheter.

As of today, Cindy still cannot breath on her own.  The ventilator is breathing for her.  She is being given medication to keep her lungs open and keep her blood pressure at a good level.  She remains sedated, occasionally opening her eyes when the sedation is reduced.  She recognizes the people around her and can hear what we say.  Because the tube is in her throat, she cannot speak but nods her head in response to questions.

One of the complications that Cindy faces is that she has an inverted stomach that is lodged under her right breast (it should be on the left side below the rib cage) and a hiatel hernia at the bottom of her esophagus.  .This has made it difficult to insert a feeding tube for her to receive nutrition. Today, she will be going to radiology (so they can see where the stomach and hernia are) to get a feeding inserted tube through her nose.

Image from BBC News

If anyone has any questions, you can leave a question/comment here or you can contact myself or her partner Rita directly.

If you want to send her cards or well wishes in any format, we will make sure she gets it.