Stacey had her first really great day yesterday! No medical crises, no serious pain spikes, great energy and enough concentration to read for a while. All in all a fabulous day!
She felt good enough that she asked me to dedicate the contents of this post to information that will be useful to those who are searching for more information about the very new procedure she had done. Her surgery is new enough that there is not a name for it yet and therefore, finding information is still tough. Though there is more specific information she will list later (names of doctors and relevant staff involved and her opinion of them, more detailed info on specific events, etc.), this post is designed to be first a placeholder to capture the main events and her status throughout and a reminder to her when she is ready to go back and fill in more details.
Stacey has been working on the following list of events for the past couple of days as her energy permitted:
Friday (June 4, 2010)
The surgery was broken into two parts. The purpose of Part 1 was to mobilize the stomach and verify that her condition would allow the esophogectomy. Specifically the surgeon:
- Separated the stomach muscles from their connective tissues
- Laproscopically inserted an endoscope (camera) to survey the terrain
- Cauterized the blood vessels around the stomach to minimize bleeding during the main surgery
Afterward, the surgeon reported that all conditions were favorable to proceed with the esophogectomy and the Monday procedure was confirmed. Stacey reports that she has no memory of pain during the procedure. She was in a great deal of pain following, though.
Saturday (June 5, 2010)
Stacey was released from the hospital Saturday afternoon and travelled 2 hours to her home. When asked, the surgeon said he does this because patients tend to have better morale when allowed to go home. This may generally be true but I'll bet most of his patients don't have 4 little boys and an exuberant dog. Things did not go well.
Stacey (in her words) "felt like crap!" The first thing that happened when she walked through the door was her dog, who adores her, jumped right up onto her thoroughly savaged stomach. Extremely painful! Once she was settled in a reclining chair (pretty much for the entire weekend!) the pain meds didn't work as they were supposed to and while also running a slight fever all weekend, her pain was poorly managed throughout her home time.
Sunday (June 6, 2010)
One note you might want to be aware of is to ask the doctor to prescribe plenty of meds! Because her dose was high, the pharmacist filled an inadequate prescription initially (this was not the hospital pharmacy) and Cary had to call for a refill. Instead of cooperating, he was told he had to wait until Monday to refill it. Why? Because their insurance wouldn't pay to have it refilled for another 24 hours. The cost of the prescription? $13.49!! Needless to say, Cary insisted on the refill immediately and paid out of pocket.
Monday (June 7, 2010)
Part 2 of the surgery was really the main event. Stacey and Cary left their house around 2:30am to be at Admitting by 5am. Stacey wasn't in great shape, needless to say. Stacey will list names and information about staff to facilitate search engine hits once she is feeling up to it.
One note: Stacey made it her goal to get out of bed and take a short walk, per doctor's orders, Monday evening. It was painful and the nurses were stunned but she did it!
Her comments about the day of surgery:
- Woke up and remembers being in lots of pain
- Doesn't have many memories of the day (before or after surgery)
- Barely remembers her time in ICU but recalls that nearly every nurse was great
Tuesday (June 8, 2010)
Tuesday was a rough day. She was still learning to cough and wound up with something lodged in her throat that she needed to cough up. She spent over 6.5 hours(!) trying to dislodge whatever was there before she was finally successful. Very painful and completely exhausting!
That was typical of the downside. On the upside, Stacey was able to takes walks twice on Tuesday - each time more than doubling her previous distance. She is very, very determined to get better and go home!
Wednesday (June 9, 2010)
Stacey pushed herself hard and when Dr. Soukiasian came through during early morning rounds about 7am, he pronounced her no longer critical and released her to a regular room. She was moved around 3pm when a bed opened up for her.
Wednesday, she successfully began her daily regimen of 3 walks/day. Once again, the distance on each walk increased, though it was necessary for her to be accompanied by a couple of people for support and tube/cord/IV management and she stopped to rest frequently. She was also put on nutrition through her feeding tube.
Thursday (June 10, 2010)
Thursday they removed Stacey's A line which monitored her blood pressure and pulse. A hard day with no particular high or low lights while she continues with her general improvement.
Friday (June 11, 2010)
Not a good day. Stacey says: "Sucky Day!"
Early in the morning the nurses began to notice that her heart rate was spiking and hovering around 147-148 bpm. That isn't unexpected and had happened a few times before. This time, however, her blood pressure wasn't strong enough to give her the meds that they had been using to control her heart rate. The blood pressure could not be raised enough to administer the heart meds because it was being depressed by her pain medications. To that point, she had been given ongoing pain meds and also had a button she could press whenever she needed a boost. She used it frequently as she was instructed to do. Eventually, the doctor advised that she would have to lose the pain button and the ongoing pain meds and switch to periodic injections. Stacey was very apprehensive and her pain levels soared for the rest of the day. However, it worked and they were finally able to stabilize her BP and administer the heart meds. As a side note: They removed her feeding tube since it didn't appear to be aiding her recovery and may have been contributing to the problem.
In all of this, the overnight nurse (Francis) noticed that she was smelling something 'off'. Blood work showed elevated levels of white blood cells and the surgeon, his fellow, his residents, his nurse all spent a good portion of the day figuring out whether it was an infection, a normal side effect of a deflated lung and a lung half filled with gunk (both as a result of the surgery), a leak or if there was something else going on. They remained alert and working but unalarmed. But, this led into Saturday...
Saturday (June 12, 2010)
Overnight, doctors decided to perform a CAT scan to see if they could isolate any source of infection or see a leak - both things that might raise her white blood count. This had been completed by the time I arrived at 3am.
After reviewing the results and seeing nothing of concern, Dr. S ordered a swallow test. This involved her swallowing a clear chemical and having x-ray techs capture the actual swallow and tracking the fluid through her new interior architecture. Dr. S and his cadre of MDs watched what looked like a real time x-ray movie of the liquid going through her throat, her stomach and exiting while discussing how perfectly everything was working. Unfortunately, it was all very painful for Stacey as she needed to be rolled from side to side to get the views they needed. With 3 chest tubes (2 located on her right side and 1 on the left), any turning to the side is painful.
However, the results here didn't offer any real insight into the cause of possible infection. Dr. S decided that he needed to look at her neck incision again and the drain high inserted below her clavicle. I was asked to leave the x-ray room while he opened the neck wound. It's too near the carotid artery to be able to give her anesthesia so she had to undergo this without any numbing effect. It's pretty hard to see it and not feel aweful for her. The wound is just under 4" long and about 1" deep. Very, very painful! Once she was back in her room, the surgical residents opened the incision where her drain is inserted, though this time they were able to give her drugs before hand so she wasn't in as much pain. The net result of all of this is that there was a tiny bit of infection at the incision site (think about the tiny bit of pus under a skinned knee scab... ) but they didn't think that was the cause. The mystery continued.
That was the morning. The afternoon was better. She was able to get enough pain medicine that she finally was able to relax a bit and rest. She hadn't been very successful in doing so up to this point since the Friday surgery! The afternoon was spent catching up on meds, respiratory treatments, etc that had been interrupted for all the brouhaha.
One very positive note: Dr. S prescribed 30cc (1 oz) of water by mouth every hour. He'll be looking at her fluid output based on this change and if everything looks good, she might have her nasal gastric tube (the tube that goes through her nose into her stomach) removed today (Monday) or tomorrow!
Sunday, (June 13, 2010)
This was the first "good" day Stacey has experienced since she went in for surgery last Friday. The mystery of the elevated white blood count is believed to be solved. Between small amounts of infection at the wound sites mentioned above and a bowel infection they found, they think they've got this whipped. The bowel infection is being treated with antibiotics as is the infection caused by the wounds. She continued to walk and increase her distance, drink her water, reduce her reliance on pain meds (a bit). She still has quite a lot of pain but she was able, for the first time, to concentrate on something distracting for more than a minute or two. She spent a couple of hours reading in the afternoon! She also looked much more relaxed and animated. Her energy level is getting noticeably better and she is able to talk on the phone for several minutes at a time.
It was a good day!
Monday, (June 14, 2010)
I'm heading to the hospital now. As of midnight when I left her, she was settling in for the night and looked as if she would sleep well. I hope that proved to be the case...
