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.
Sample Liquid Diet
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:
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
I’m sure everyone knows by now that Cindy’s surgery was successful. I don’t think we knew how important the surgery was today. The goal was to repair her hernia and see what state her abdominal cavity was. This is what the Dr. Tsai, her surgeon, told us:
Cindy’s stomach and colon had been pushed up into her thoracic cavity by the hiatal hernia in her diaphragm. It was pressing next to her right lung. It was also twisted and folded and was beginning to die in thoracic cavity.
The doctor was able to untwist her stomach, pull her stomach and colon down into the abdominal cavity and tack it in place. He repaired the hiatal hernia and closed it with a mesh.
This is great but cautious news.
She is still high risk.
There is a 30% chance the hernia will split. One good cough would do it.
She is still susceptible to pneumonia and sepsis.
No one knows the shape/status of her lungs or heart. We do know her right lung was 40% compressed and she has an enlarged heart. Dr. Ardilles, Cindy’s pulmonologist, will keep a close eye on her. When she is strong enough, he will order x-rays and tests to measure these organs.
This was the report from the surgeon. Cindy didn’t go to the recovery room but straight to the ICU. She complained about being thirsty, hot, pain, etc. Tubes were hooked up, she was given fluids and medicine, nurses were in and out of the room and an x-ray was ordered. After a while Dr. Ardilles showed up. He was stunned. He held up her chest x-ray and showed that the right lung was at 95% capacity.
This day has been incredible. The prayers, well wishes and good thoughts all helped the surgeons hands. Thank you.
If you would like to read about Cindy’s journey to this point, you can find it at Cindy’s Status.
Last Wednesday, exactly one year to the day of the last post, Cindy spoke to a thoracic surgeon about repairing her hiatal hernia. Her pulmonologist found that her right lung is working at 40% capacity, down from 50% capacity last year. Her stomach has been pushed up into her thoracic cavity by the hernia and continues to press against her heart and right lung. Cindy is having a harder time breathing due her the compression of her right lung.
The surgeon said that Cindy is in critical shape now. She is extremely high risk. He says he does around 5 high risk surgeries a year and his patients have all gone home within a week. Even the pulmonologist thinks it’s a good idea. So Rita gave the OK after she finished conferring with family and friends.
Cindy is in great spirits. She is confident that the surgery will be successful.
The surgery is scheduled for Monday, August 3rd, 2015 at 9:30 am Pacific.
Logically, I’m all for it. This is what Cindy wants. Her quality of life after the surgery will be the same or will improve. Without the surgery, she will get worse and be miserable.
Emotionally, I would like her to have the surgery on a Monday in 2025.
