I’ve had the experience recently – twice – of being in a space in two different hospitals, waiting for a loved one to come out of surgery.   The first was last Monday when my sister Cindy had her hiatal hernia repaired.  The second was today.  My wife, Pauline, had knee replacement surgery.

The first one took place at John Muir Medical Center in Concord, CA.  The waiting area was in the main lobby of the hospital, conveniently close to the Gift Shop, Cafeteria and bathrooms.  Smaller sections  for groups were created by they way the chairs and tables were placed.    A monitor was on the wall at one end of the waiting area, advising waiting friends and family as to the status of the surgery – basically Pre Op, In OR, Recovery and Out of Recovery in different colors.    There was a table by the monitor that was manned by someone who could “find out” more detail from the OR.  We were given a patient number that was used to track the patient on the monitor.  We were also handed a paging device just like you get in a restaurant.    It went off when the surgery was over and we were taken to a room where the surgeon met us and explained the surgery, how Cindy was and what to expect.  Cindy went to the ICU immediately.

Today’s experience was much different.    The surgery was at Kaiser and the waiting area was on the second floor and consisted of chairs and tables haphazardly placed in the waiting area.  There was a table manned by a woman who told you what the patient’s assigned number was and wrote it on the back of a card like the one seen above.  She couldn’t explain what anything meant and often let me know that she couldn’t help me with any information.  She hoped that the doctor would call me before Pauline got out of surgery.  If not, there was nothing she could do.  There was also a monitor on the wall that was color coordinated with the information above.  Luckily I got a call a half hour after Pauline got out of surgery.  I was given minimal information about the surgery and about Pauline’s condition.  Pauline’s surgery lasted for about four hours and was in recovery for five hours before they moved her to a room.  I was allowed to visit Pauline in the Recovery room for ten minutes.

In conclusion, the experiences were the same but different.  Each hospital tried their best to make waiting more informative by using technology.  But one had staff that cared and the other had staff that told you – without being asked – that they knew nothing.

Bottom line?  Communication was much better at John Muir than at Kaiser.  Cindy’s support team was able to tell her about her surgery, how it went and what to expect.  When Pauline asked me what the doctor said about her surgery, I couldn’t tell her anything other than how long it took.

Question – should hospitals put a lot of effort into the business of customer service to friends and families of patients?  What does it mean for patient recovery?

If you would like to review Cindy’s journey to now, you can read ALL the posts on this blog.   The previous blog, Cindy’s Status, has been combined with the posts on this site.

Things seem to be quiet on the western front.  Cindy was busy making appointments with her doctors and for labs:

• Labwork this Thursday.
• A trip to the surgeon for a checkup on Friday.
• Next Wednesday is a trip to see the Pulmonologist.

That’s it for now.

If you would like to review Cindy’s journey to now, you can read the last few posts on this blog and find the posts from previous years at Cindy’s Status.

Today, being my birthday, I thought I’d treat Cindy with my presence.  I let her know I was coming over.  She met me outside her house just at the top of her driveway.  She grabbed my arm and we took a small walk.  You can see the path we took in the picture below (just follow the blue line)

Cindy was able to walk without an oxygen tank.  We took it slow.  She made it to the target destination and back into the house.  She tested her oxygen saturation level when she sat down.  It should be at least 90 but it was at 76.  She rested an it slowly came up to 89 and eventually hit 96.  It has been a long time since she was able to do that.  Just before she went in for her surgery, she walked to the bathroom (about 20 steps) without oxygen and her saturation level was 75.  She wasn’t able to get her saturation level to come up without oxygen.

Before the surgery, Cindy couldn’t talk for more than 2 minutes without running out of breath.   I sat and talked with her for about an hour today.  She didn’t need any oxygen and was able to talk clearly without sounding winded.

It was a very nice birthday present.

If you would like to review Cindy’s journey to now, you can read the last few posts on this blog and find the posts from previous years at Cindy’s Status.

Crazy Eyes, Cindy’s favorite Frizzie Minion, decided to help crush her medicine.  He took the pill crusher, put Cindy’s pills in he container and crushed them.    But before he could hand the powder to Cindy, he sneezed and the powder went all over the place.  Cindy went to grab him but he got away.

(Okay, this didn’t really happen but I thought it was a good story since there isn’t much going on today).

Today’s menu started with light liquids (broth, Jello and ice cream cup) and ended with heavier liquids and soft food (shake and mashed potatoes).

If anyone has any suggestions for liquids and soft foods, please let us know.  My friend, Tobie Lurie, suggested a juicer.  She uses it and loves it.  That’s a great idea.

Cindy is very grateful to be home.  She is so overwhelmed with gratitude, she can’t stop crying.  Cindy loves the tremendous support, love and prayers on Facebook.  Anytime anyone does something for her, she thanks them and becomes very emotional.  Even in the hospital she always thanks anyone who helps her – doctors, nurses, therapists, staff, friends and family.  And she keeps everyone on busy!

Cindy keeps Mary and Rita occupied with requiring her medicine to be crushed to a powder.  They says it’s like giving her cocaine except she doesn’t snort it.  She also can’t take it mixed in water, so it is a challenge.  Also, figuring out what liquids to serve her can also be a challenge.  At least it’s only for a few days.  If you have any suggestions, please let them know.

You might be wondering how Cindy is spending her days now that she’s home again.  One thing she did was to take a shower.  That was a treat for her.  Then she decided to surf the web and look for good deals.  So she found something she wanted from Amazon and I had the privilege of buying her an iClever 50 Watt 6 Port USB Desktop Rapid Charger with SmartID Technology – in black.

If you would like to review Cindy’s journey to now, you can read the last few posts on this blog and find the posts from previous years at Cindy’s Status.

Dr. Tsai came in today and told Cindy that her swelling had gone down and she could go home today.  That news was a pleasant surprise with one glitch for Rita and Mary – they are going to have to figure out how to get Cindy to be on a liquid diet for the next six days followed by a soft diet. That’s not an easy feat if you know Cindy.  And Rita had to learn how to crush Cindy’s medicine.

Speaking of medicine, Cindy is now taking 5 medicines – down from 30.  Even her $75/month Leteris – for pulmonary hypertension – is off the list (whew!).    Bumex (diuretic) has been cut from 1 mg a day to .05 mg every other day.

More good news – Her oxygen assist level is down to 1.5 liters.  It was at 3 on Monday when she walked into the hospital.  She is off the CPAP.  Last night she was able to expel carbon dioxide on her own and did not stop breathing.

Down to 1.5 liters O2 – just like room air. Doesn’t need vent. Expelled O2 on her own and not stopping breathing.

Cindy has been handed a new life.  She needs to respect it.  Please help her by encouraging and supporting her.

We will continue to give you information on Cindy’s status.  As she improves, she will being pulmonary therapy and weight management.

If you would like to review Cindy’s journey to now, you can find it at Cindy’s Status

Cindy’s room has been unbearably warm for her. For the last few days, the nurses have tried to get it cooler, but haven’t been able to figure out how. This morning, they found out that the room temperature in her room was controlled in another unit. They moved her to another room where she is much more comfortable.

We originally thought Cindy was going to be moved out of ICU and onto the floor. Since she needs to use the CPAP at night and only the ICU is qualified to operate it, she will stay in the ICU.

Physical Therapy came to visit this morning. They wanted to make sure she was able to walk. The other times she had been in the hospital for any length of stay, she needed to go to rehab. She took five steps forward and back and then did it again. Her walking is not a problem.

Doctor Tsai’s Report

Dr. Tsai came to visit Cindy this morning. He told her to stay on the pain medication. People have a tendency to hold their breath when they are in pain. The doctor wants her to keep breathing without hesitating for the pain. Cindy was on Morphine, but it made her nauseous so they switched her to Fentanyl – which we know she can tolerate.

The doctor ordered an esophageal test otherwise known as a swallow test. He wanted to make sure there were no leaks from the surgery. She went to X-ray around noon today. They found no leaks.

What Dr. Tsai didn’t tell Cindy was that her stomach is swollen. That means no solid food until the swelling comes down. Cindy will be on a liquid diet for weeks or months, depending on the swelling. He also said that her stomach has to learn how to “behave” like a regular stomach should act and not like one that has lived next to her lung for so long.

Dr. Ardillis’ report

All of Cindy’s “numbers” (Blood pressure, white blood cell count, heart rate, etc.) is holding study WITHOUT medication. Cindy has not had any medication for pulmonary hypertension since her surgery. Her blood pressure and heart rate are good. Her lungs are functioning well. This is incredible. She was using 3 liters of oxygen for breathing with her trachea. Now she is using 2 liters. Her CPAP went from 15 peeps to 5. She is getting rid of the carbon dioxide by herself. She is able to breathe somewhat through her nose. Her saturation hovers around 96 even without oxygen support for short periods of time.

What now?

As of now, Cindy will be in hospital for at least a couple of weeks depending on the stomach swelling. She will be on clear liquids and crushed medication.

Graphic by http://www.coastalgi.com/images/sample_diet2.png

People have been asking why Cindy waited so long to have the surgery.  The answer is complicated.  Cindy has many issues going on, not just the hernia.  The surgery was and had been risky for a very long time.  You can see the blog post from April 2014 below.

Cindy has been doing great today.  She was taken off the vent this morning and is breathing on her own through her trachea.  When we (Rita, Mary and Debbie) walked into her room, she was alert, aware and texting on her phone.  She showed us the incisions from the surgery.  There were 8 due to the complexity of the hernia, liver and other organs.  The picture below is a good representation of what her incisions look like.

Dr. Tsai, her surgeon, was doing another surgery at another hospital.  His assistant Sherri walked into Cindy’s room and was stunned to see her doing so well.  This is what she told us:

• Cindy was stable during the whole surgery.
• The hernia is made of fibrous tissue and fat.  It opened from the abdominal cavity into the thoracic cavity through the diaphragm and acted like a balloon, allowing the stomach to move up.  The surgeon pulled the hernia down and tucked it in place. below the diaphragm which has been closed with mesh.
• The diaphragm was stretched due to the hernia being around for so long.  It is possible for the colon to go through the diaphragm into the thoracic cavity, but not likely.  The stomach is tacked down and not going anyplace.

After Sherri left, Cindy sat in a chair for a couple of hours.  She did well for a couple of hours.  Tomorrow she will have a swallow test to see if she will tolerate a fluid diet.

If you would like to read about Cindy’s journey to this point, you can find it at Cindy’s Status

Below is a reprint of the blog I posted last year:

Friday, April 4, 2014

Robotic Laparoscapy

The underlying cause of Cindy’s “health scare” during the last two months of 2013 is due to a hiatal hernia and her stomach being twisted.  She is in danger of having the blood supply to her stomach being cut off.  She went to a surgeon (Dr. Kwan – see below) today who was confident that she would be able to successfully untwist and move Cindy’s stomach out of her thoracic cavity and repair the hiatal hernia using Robotic Laparoscopy.  Below is a picture showing the hernia (on the left) and Cindy’s stomach (on the right).

The hernia is basically a hole into the thoracic cavity through which her stomach traveled to.  Her stomach is pushing against her right lung (giving her only 40% breathing capacity) and making her heart work harder.  Last Friday (3/28/14) Cindy’s heart had an irregular heart beat (rate of 178) which sent her to the emergency room.  They gave her a shot of digoxin – and some pills for home – which helped her heart but interfered with her oxygen absorption.  She was feeling confused during the weekend and was back in the emergency room the following Monday where they took her off the digoxin.  She is feeling much better now.  Cindy is also anemic and will have a colonoscopy this Monday (4/7/14) to see if there is any internal bleeding.

As long as Cindy’s labs and the results of the colonoscopy are all good and the Pulmonary doctor agrees that Cindy is healthy enough, the surgery will be in six weeks.  She expects to be in the hospital for about 2 days.  Recovery at home should last about 2 weeks.

Above Graphic by http://www.markfuscomd.com/images/incision_nissen.gif