7-4-2021 From ICU to feeding tube--and then to St. Louis

Photo caption: The view from Linda's window at St. Luke's Hospital. We got the stuffed camel at Christmastime in 2019, when Linda, Marilyn, and I went to Our Lady of Snows in Illinois to look at the Christmas lights. We gave Linda the camel as a comfort and a reminder. She ended up sleeping with it on many nights.

 

(Tricia's perspective)

The last few days have been a whirlwind, and it's hard for my mind to latch on to everything that has happened. On Friday evening, Linda was with me, talking and joking, and we were preparing to wake up the next day and watch a movie and go over her medical needs. On Saturday, those possibilities had ended, at least for the time being. After Linda was transported to the hospital, Marilyn packed up quickly and headed down to southern Missouri to be here as well. Ed came down to help a few days later.

While Linda was in the ICU at Ozarks Medical Center on Saturday and Sunday, the doctors discovered she had a very bad urinary tract infection. She had been in a lot of pain in her back and side, but neither she nor I had thought that was a symptom of a UTI, and she had not had a fever.

Because Linda's sugar levels were in the 40s when she presented in the ER, the doctors weren't certain why she did not emerge from the hypoglycemic coma after they gave her a glucose drip--they told us that while that level was low, it wasn't so low that it would normally be easily reversed. For a short time, they were wondering if the infection was a possible confounding factor. But at this point, Linda remained unresponsive and in a deep coma. But in one sense we were incredibly lucky: Unlike other patients in her condition, Linda was breathing on her own and her heart and other organs were strong. She required no ventilator or other life support at this point. It was one positive in a sea of negatives.

Today, our hospitalist, Dr. Mahmood, spoke to Marilyn and me about next steps. At this point, he brought up the possibility of withholding food and "keeping her comfortable."  Just three days in, we were absolutely not willing to have this conversation. We were clear on the seriousness of the situation, and of what the negative outcomes might be. But we also had been furiously searching online for information about hypoglycemic comas that occur while a person is sleeping. We found some stories that had good outcomes--but in each case, they required giving patients a lot of time to recover at their own pace.

On Thursday, July 1, a surgeon inserted a feeding tube, known as a PEG (percutaneous endoscopic gastrostomy) tube. We agonized over this decision. At this point, it had been more than four days since Linda had received food of any kind, other than glucose. At the same time, there are both physical and psychological implications to the insertion of a PEG tube. Feeding through a tube is a form of life support, and as such it is something that, if Linda's condition did not improve, would be incredibly difficult for us to withhold. There also was a chance for infection, Dr. Mahmood explained, and even worse, because Linda would have to be temporarily intubated during the surgery, there was a slim chance that she would not resume breathing on her own once the surgery was over, and that she would have to remain on a ventilator.  

All of these possibilities were horrifying. So we had to decide whether to opt for the PEG tube, with all of these possibilities, or for the less invasive nasogastric feeding (in which a tube is inserted into the stomach through the nose). But the doctor assured us that these negative outcomes were possible, but unlikely. He went on to explain that nasogastric feeding was not desirable for several reasons: First, it would not allow them to administer medications as effectively as they could using the PEG tube. Second, it would make it more difficult for us to place Linda at a skilled nursing facility--to cover a stay at a SNF, the insurance company requires what is called "skillable" care. Because Linda was not on any other form of life support, the PEG tube would be the skillable care needed for her to qualify for coverage.

Finally, it was clear at this point that this would not be a short-term situation. Inserting the PEG tube now, the doctor explained, would mean she would only have to undergo one procedure. It was highly likely that even if a nasogastric tube was used, a PEG tube would be needed anyway. So, after much agonizing, we decided to go through with the surgery. The insertion of the PEG tube was very quick--the surgeon called us before the surgery happened, and then 15 minutes later when it was complete. We were relieved that the surgery happened without incident. She continued to breath on her own after she was extubated post-surgery, and more important, she was receiving nutrients and medications again. 

It was not a day later that a physical therapist came into evaluate Linda, and even had her sitting up. The physical therapist, PT assistant, and nurse all were amazed that even while in a coma, Linda could automatically put her hands down on the bed and on her knees to keep her balance. This was really our first indication of hope.

At this point, Ozarks Medical had done all they could for Linda. We wanted to bring Linda up to St. Louis, both so we could get a second opinion and have her nearer to us. At first, no hospital in the St. Louis area would accept her, because they had no available beds--all due to a surge in COVID-19 patients. But on Thursday, we got the word: St. Luke's Hospital in Chesterfield, a suburb of St. Louis, had a bed available and would accept her for admission.

Around 11:00 p.m. on Friday, July 2, a nurse called me on my cell phone to tell me that Linda would be transported by EMS overnight from Ozarks Medical to St. Luke’s. By the next morning, she had been admitted. Marilyn had headed back up to St. Louis the day before to be there ahead of time.

Ed and I stayed behind one day longer. On Saturday, Ed went for the day to his family reunion about 90 miles away, while I stayed behind to pack and prepare to return. We let a few of Linda's friends and neighbors know what was happening, and then on Sunday, July 4th, we headed back up. It felt like anything but a holiday weekend.