Christmas Came

As much as I hate to admit it, staying here for Christmas was the right thing to do. I am slowly gaining my strength back from the stomach surgery, but need a few more days of rest before we head home but, I am already starting pack. We are boxing up all my summer clothes and will mail them back, and we bought a car top carrier for all of our extras.

The Wednesday before Christmas, Crystal and Wayne's niece, Lora, came over for a visit and bearing gifts. We have two small Christmas trees decorated and garland, bows and lights to make the apartment more festive. Wayne and I would go out for an hour or so every afternoon shopping and we eventually got it all done. He wrapped all the gifts, so we managed to get everything done, and with all the gifts it was "beginning to look a lot like Christmas."

The next day Cathy and Kayce flew in after spending the best share of the day at O'Hare. On Friday night Wayne took them to a Duke basketball game and they got to sit with the Cameron Crazies, which they loved. My nephew Daniel stopped in on Saturday evening to spend the night on his way to Florida. It was so nice to have a steady stream of company. It really made it seem more like home.

Sunday morning we packed up the car and made the 3 hour drive to Caroline and Jim's house at the coast. Their house was decorated beautifully and Caroline and Crystal had all the menus planed out and it was wonderful. We lit candles and sang Christmas carols and I was able to eat anything that was soft, and even had a few pieces of candy. It turned out to be a wonderful holiday.

We came home late Christmas day, and Cathy and Kayce flew back to Chicago. I saw the stomach surgeon on Friday and he has released me to go home. I'm having severe problems with my immune system and will have a 4 hour infusion on Wednesday and every 3 months from now on. IF all goes well, it is possible that my pulmonary doctor could release me on Thursday. As long as I stay healthy, I should be good to go.

Have a safe New Year and hope your Christmas was as magical as ours.

God Bless,

Joy

Happy New Year in the "Pines"

We spent the day at the hospital Wednesday with pre-surgical testing prior to the bronch / dilation procedure. It may be to early, but Joy feels she may be breathing easier but make no mistake about it, still short of breath most of the time. Time should be the healer, so they say.

Thursday's clinic was the usual "all day sucker" but at this moment in time, her numbers appear to be stable or improving. She is tolerating the "real food diet" but appetite is nill and the size of her meals are very, very small. NOW! for the first time in her life, she is advised to maintain or gain weight....................not lose anymore. She is down to her high school weight and can't believe it.

We anticipate the surgeon to place Joy on regular diet and eliminate the nightly tube feeding when we meet with him next Friday. If she tolerates that and does not lose weight, the Team will meet and hopefully concur that she can be released to return to Illinois sometime in early January. A lot of if's to go.............

But she is encourage that the is the FIRST real conversation about her leaving the area albeit to return every month or so for awhile before 3 month return visits become the norm.

Merry Christmas and Happy New Year from the Carolina pines.

Discharged, once again

Joy was discharged mid-afternoon yesterday so once again we are adjusting to a new routine.

As expected, she remains on a near normal diet but served in pureed form. Even oatmeal must be prepared in a blender for smoother texture. No big deal. She will remain on this program for about 2 weeks or until such time as we see the surgeon in clinic. Discharge orders indicated that she remain on tube feeding as well and we are attempting to get clarification on that. All meds can be taken orally. So far, she has not experienced any side effects to eating or swallowing.

She will return to hospital on the 19 th for a bronch / dilation procedure to open the lower airways in her lung (s). Then, pulmonary clinic with blood, lab and transplant pulmonary appointment the next day.

Believe.

Now, Wayne needs to check the Duke men's and women's basketball schedule for dates and times and hopefully Joy's schedule won't interfere with that. She may have to adjust her schedule. First things first.

Christmas in Dixie

Joy had a restful night and tolerated the bronch / biopsy this morning. They removed some fluid but discovered narrowed airways in the right lung which may be corrected by a similar procedure next week. She had additional x-rays to determine the extent of fluid build up outside the lungs in the chest cavity. If significant, they may want to "needle aspirate" that fluid. Joy had pureed lunch and dinner without any apparent issues or concerns. Time will tell!

If all of the planets and moons align perfectly tomorrow, she may be discharge with the anticipated lung procedure handled as an outpatient next week. Ideally, they want to monitor her eating for a couple weeks after surgery so we must be local should complications develop. Additionally, the transplant team wants her to remain local until she is once again back to normal from an oxygen saturation perspective so it wise to remain here and enjoy Christmas in Dixie and not create a hasty return home. Given the current weather conditions in Chicago and our high 70 degree days here, spending the holiday at daughter Caroline and Jim's home on the NC coast sounds quite appealing. Cathy and Kayce will fly down to join in the festivities. Truth be known, they probably just want to get out of the bad and cold weather in Chicago. Go figure!

Progress?

Although the 24 hour tube feeding, continuous supplemental oxygen and several IV's remain, Joy is making some progress. The O2 saturation levels hold at satisfactory levels WITH O2 but drop to much when walking, bathing, etc..

Swallow test conducted today showed "slight" opportunity for thin fluid to go down the windpipe instead of the esophagus but they feel they can train her to change the way she eats and swallows to overcome this issue so the plan is to start her on pureed food tomorrow, after she recovers from another bronch / biopsy procedure. Hopefully, but doubtful that they can extract enough fluid from her right lung to improve her breathing and shortness of breath. One of the conditions for going home will be to be able to function without O2, once again.

So we look for result from the biopsy / bronch, see if she can tolerate food once again and continue to show improvement with the breathing issue. And, no aspiration. She was lucky that this one happened in the hospital! Otherwise, it could have been even more catastrophic or potentially fatal so we MUST ensure she is eating and breathing before we could consider leaving the area regardless of the calender.

Will see what tomorrow brings.

Not Much Change

Modified swallow test indicated "some" aspiration but test was completed late in the day so we do not know where they will go with this.

Vomiting has ceased but it should since she hasn't eaten and water only limited to small sips with some meds that cannot be handled through IV's. Back on the stomach feed for 24 hours, not just 14, at least for now. Chest x-ray has changed very little. O2 levels drop significantly for any activity other than laying in bed. They feel this should improve as the body rids the aspiration from the lungs.

Now it is the weekend and nothing will happen!

Remember "The Dime"

When I left the hospital last evening, Joy and I walked the halls and she was eating the full liquid diet albeit esophagus issues that I mentioned yesterday. We fully anticipated discharge today.

I think I have mentioned previously, how this process can "turn on a dime".

When I arrived this AM, she was on oxygen, several IV's, folley catheter, no food, no water, no activity and was extremely uncomfortable from almost non-stop vomiting. Her oxygen saturation level dropped to the high 70's (>88% causes concerns) during the night and she became extremely short of breath which drew a room full of physicians, nurses and respiratory staff. Chest x-ray showed significant fluid around the right lung.

By mid day, the vomiting had ceased and her O2 levels returned to the low to mid 90's WITH supplemental O2. Her stomach area is very sore undoubtedly caused by the strain from the vomiting. The speculation is that she aspirated food into the lungs possibly due to previously mentioned issues with the esophagus and edema from the surgery. I don't understand all of this since my degree didn't cover gastroenterology and pulmonary specialities.

They have scheduled another and more technical swallow study test for tomorrow to get a better picture of the problem. They have prescribed Lasik (diuretic) again with hopes this will reduce the fluid around the lung. So, no food until that swallow and back on the stomach feeding that we thought was history.

"We knew it was just to good to be true".

Progressing

Joy continued to improve today and now on a full liquid diet which we expect that she will be on for a couple weeks prior to the pureed foods. She is definitely experiencing problems with food and meds slowing down or holding in her esophagus which at times is rather painful and uncomfortable. How long will she have this issue? Days, weeks, months or forever????? Hopefully, more like weeks but unfortunately, this is a very uncomfortable but frequent side effect of the surgery.

It is possible that she may be discharged tomorrow, but time will tell.

Unable to Complete Barium Swallow Test

She had a restful night and is doing better than either of us expected today thus far. We were extremely disappointed that she was unable to "pass" the swallow test but it did not reveal any leaks or tears so that is a positive. We are not really clear on when they will repeat the test but may wait a couple days for internal swelling to diminish. They removed her IV's and pain med pump and plan to start her on oral meds tonight or tomorrow. They gave her some liquids and she did not experience any problems so we do not know what to expect or when she will start with pureed foods.

Surgery Completed

Joy's surgery concluded late this afternoon after several hours delay due to emergency surgery on a kidney transplant patient. According to the surgeon, the surgery went according to plan and she remained stable throughout. Although heavily sedated, she was awake enough to suggest that I go home, get a good nights sleep and take my time getting back tomorrow. They were hooking her up to a morphine pump so she can administer pain med as needed.

Plan for tomorrow will be to complete another "swallow" test to ensure their are no leaks and that she actually can swallow. If this is successful, then it will be clear liquids for a day and then combination of clear liquids and pureed food for a couple weeks. Then if that is successful, it will be very small but frequent meals of extremely well chewed small bites of food the rest of her natural life.

A long way to go...........................we know of more people with complications from this surgery than successes so we hope for the best.