Journal entry by Charles Ellis

The latest. Kate's tolerated the picc line delivered nutrition, an important first step in this process. She's still short of breath and her O2 stats have hovered in the high 80's to 90. She won't be released until that changes. Also, the New West (our primary care group) hospitalist would like to see the feeding tube put in while she's in the hospital. If that happens, she'll be there longer, I'm sure.

She also got OT and PT evaluations yesterday. I think the plan is to set up home based pt for her, something she needs.

Kate's upbeat and it's great to hear her voice with a positive note. I'll stay with these more frequent updates until the current plan becomes clear.

Journal entry by Charles Ellis

Kate's pneumothorax resolved thanks to concentrated oxygen therapy so they didn't have to put in a chest tube. An esophagram (apparently a real thing) showed no tears in her esophagus, so surgery was not required. Thankfully. She said they considered putting in the ICU Sunday night, but she turned around.

The picc line went in yesterday and when I talked to her yesterday evening she was 17 minutes into the first, 24 hour, transfusion. The first one spreads an 8-hour infusion over 24 hours to avoid refeeding syndrome. Kate sounded very upbeat. "Somethings happening."

Due to my own recent illness I've not been in to see her, which I don't like; but, I'm still pretty weak. Jon took her in to the E.R. on Sunday. Not sure when she comes home, today or tomorrow. I think tomorrow's more likely.

Journal entry by Charles Ellis

OK. No straight lines. Kate was to have the picc line inserted today, then tpn feedings starting tomorrow. However. Back to the Swedish ER. Yesterday. Pneumothorax. Don't understand fully what they're doing today, but she's stable and on strict bed rest. Her room number is 6143.

Journal entry by Charles Ellis

Slowly a plan takes shape. On Monday morning Michah, a nurse from Health Options (something like that) will come here and pick Kate up. He will take her to their site where a pic line will be inserted. He'll return her home around noon. The next day, Tuesday, is a 24 hour infusion and is the beginning of my training. The good news is that the TPN will balance her electrolytes and other key chemicals while also providing nutrition.

The surgeon wants to see her next week to talk through the feeding tube placement some more. He said he wants at least a week of the TPN before surgery.

Kate's mood is almost giddy. She sees this as the beginning of a real solution to her weight crisis. I'm glad to see her feeling good. Whether this is a solution or not, only the next few weeks will tell.

Journal entry by Charles Ellis

Yesterday's visit got long and we didn't hear the results until the evening. The long part was not medical, but bureaucratic. Anyhow. Kate's stent is open. That's what we know now thanks to the ct. And, right now, that's all.
Of course, that's good news.

As of late yesterday the plan was, if the stent was open, to have a home health company come here to Shadow Mountain and place a pic line, then set up Total Parenteral Nutrition (TPN) for Kate. Eventually I'll manage it, but home health nurses will until I learn how. This is still preliminary though to the feeding tube.

When that happens, I don't know. The surgeon is being very cautious. Just why I'm not sure. Again, I'll let you know as we know more.

Journal entry by Charles Ellis

Kate has a ct tomorrow to see if the stent is in place and functioning as it should. We assume it is, but before she gets the feeding tube placed, this is important information. I'll let you know after the ct how it went.

The exact next steps are still a bit unclear, but she sees the surgeon, Edwyn Smith, tomorrow, too, and I imagine we'll have a better sense of things then.

So it drags on, no resolution on the weight issues. None on the more generalized nausea she occasionally experiences on waking. Looking for some light here, not sure where it is right now.

Journal entry by Charles Ellis

Visit to General Surgeon Edwin Smith just now. A kind man. And, cautious. He wants Kate to have a week or two of pic line fed nutrition before he operates. "To be as sure we can that you'll tolerate the procedure." Guess that falls under, Physician, first, do no harm.

This will be in-home, started by nurses but managed by me. I can learn this, right? Besides I've got Kate as backup. Surprisingly, he also said, after the feeding tube is put in, that will be at home, too. Not sure whose decision that actually is, Gidday's I imagine, but I know Kate wants a few weeks in a rehab center.

But, that's for later. For now, proceeding.

Journal entry by Charles Ellis

Kate woke up feeling terrible yesterday. Shortness of breath. Nausea. And, I could see despair behind her eyes. Maybe, even fear.

She decided to call Lisa Gidday, our internist, for a sick patient appointment. Then, one of those small positive random events. Lisa's schedule was full. Kate would have to see Tabitha Lane, her relatively new P.A.

Tabitha, a former oncology nurse and military corpperson, came in. "I was reading your file. It's long."
Yep. Tabitha carried herself much like Dr. Gidday, an athlete confined for the moment to a stool. Her left leg splayed out behind as she began asking questions.

Her empathy was obvious. She leaned in, nodded, frowned. "What do you want to do, Kate? A feeding tube? I think you're there." She was seeing Kate for the first time, at the tail end of an awful four months. She's clearly malnourished, thin and weak. "And, your brain may be effected. Not enough fat. You're probably not thinking straight."

Kate nodded and answered her question, "Yes. A feeding tube, a rehab place, some time to get back on my feet." She told Tabitha about the panic attacks, too. Twice in the last month she's had nausea, retching, and dizziness, feeling like she had nowhere to go. "Those could be related to the changes in the brain."

It took a full day to get consensus among Tabitha, Dr. Gidday, and Dr. Rhee (G.I. doc). Kate will see a general surgeon this week about placement of a feeding tube. Presumably a referral to a rehab center, probably Brookdale, will follow.

How long it takes for all this to come together, I don't know. I do know that Kate is finally happy with the results. She's been asking for a feeding tube for a month and a half anyhow. We both feel she needs to break this 80-82 pound barrier and get moving toward a healthy weight. Then, she needs some p.t. to nudge her stamina back toward a reasonable level.

BTW: Kate gave me a chilling statistic. Anorexia as a diagnosis carries a mortality rate 12X the nearest other illness. Why? The electrolytes get out of whack, the body turns on itself. Knowing this, and knowing her condition closely mimics anorexia, she has, for about a week, had "A sense of impending doom."

We'll see how all this plays out.

Journal entry by Charles Ellis

Not sure where we are. Kate's weight continues stuck in the 80-82 range, a bit above, a bit below, but always settling back there. She's had both nausea, on waking, not on eating, and shortness of breath over the last week. She's struggling to see a way forward and so am I. Whatever we're doing right now doesn't seem to be increasing either her weight or her stamina.

She is fighting back. This week she instituted a get out of the house each day for a short bit plan. Monday was the post office. Yesterday was the Starbucks at King Sooper while I shopped. Today we're delivering chicken noodle soup to Golden. Tomorrow, mussar. Friday we're taking kimchi to Dr. Rhee as a thank you. A positive development.

This last came from her observation, "I feel isolated and alone." No doubt. She wasn't getting out of the house. If you become an invalid, you risk becoming in-valid. Reading her the comments on these posts is also a positive. 

I will stop these posts when she maintains weight gain and has increased stamina. May be a while.

Journal entry by Charles Ellis

On Thursday night, Sept. 27th, Kate began bleeding. She wasn't worried too much and decided to wait until morning. In the morning, around 6 am, the bleeding continued. "Take me to the emergency room." We both agreed on Swedish in Englewood.
They stabilized her. The bleeding didn't stop and her hemoglobin was low so she went to a hospital room. (8123, where she still is.)
After several tests including a colonoscopy and nuclear imaging, an embolization of the bleeding was attempted, but failed. Since her blood loss continued, 8 transfusions by that time, Kate and her docs agreed that bowel resection was necessary. That happened on Sunday afternoon.
Imaging of bleeds in the bowels is more art than science, so the surgeon removed what he hoped was the right segment.
Yesterday (Monday, Oct. 1) she was in pain from the surgery, no pain before, and really confused. Her hemoglobin was better.
However, it dropped some later in the day and continues a bit lower than we want. Both the hemoglobin has to stabilize at a safe level for her and her bowels need to restart before she can leave the hospital, maybe as much as a week to ten days. 
I'll see her again this afternoon and post an update then. I'm sure visitors would be good for her, though she may be asleep, of course.
Kate’s Story

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