Journal

Journal entry by Charles Ellis

Kate's now over 84 pounds. Her weight ticks up slowly as the tpn pump pushes nutrients into her body via her blood stream.

Other changes, too. PT has her moving with more confidence, one foot on a step on the stairs, walking like a healthy person, not a sick one. She's also eating better and more. She eats normally, no hesitations, long pauses.

And, keep in mind that this is all prep work for the insertion of the j-tube which should take her rest of the way. At least in terms of weight. This all supports our long standing supposition that a lot of Kate's misery came from malnutrition. As her nutrition has improved, and now her weight, she's better all round.

We have the rescheduled pulmonologist appointment tomorrow. Still looking for two things: surgery risk analysis and the reading of the ct from her last hospitalization checking for lung disease.

There are many, many more steps on this road, but for the first time we both are feeling positive.

Journal entry by Charles Ellis

Kate went over 82 pounds! To 82.6. Go tpn. Made her very happy. This will be in place of my Wednesday update, but I will post something after we see Gupta.

Kate commented yesterday on how tiring it is to be sick. All the doctor visits. Schlepping the tpn bag, the portable oxygen concentrator, using the rollator. And, I added, the anxiety that each visit might bring bad news. This is in addition to the actual illness, the Sjogren's, the malnourishment and weight loss, whatever lung issues she may have. This has been her life, acutely now since September 28th, and at a more chronic level for almost 18 months. It takes a strong spirit to stay centered, keep a positive attitude. And she's done that. Most of the time.

On Thursday we see Dr. Gupta, the pulmonologist. He will have the results of the pulmonary function test she took last Thursday and his reading of the CT scan from her pneumothorax hospitalization. Two key and very important learnings for us will happen in that visit.

First, is Kate strong enough to withstand the surgery that would place the j-tube? My lay opinion is that she is, based largely on how she handled the hemicolectomy (removal of part of her right bowel) under the stress of all that had come prior to that with the bleed. Still, I do see Edwin Smith's point that killing her to cure her is not the best course of action, so knowing her lung capacity is crucial. Gupta will tell us.

Second, and just as important for her future, is his reading of the CT scan. Does she have an interstitial lung disease? The pulmonologist at Swedish who ordered the CT thought there might be indications of it. I'm not sure what this means long term, but it could mean that there is a treatment for her breathing issues. Her rheumatologist said, "If there's interstitial lung disease, I can treat that."

So, no pressure.

The j-tube will improve the whole feeding process since it requires none of the sterile procedures of the tpn and uses gravity to move the nutrition.

 

Journal entry by Charles Ellis

Kate's pleased. She's gained a bit of weight, up to 81.6 and these new nutrition bags have about a third more calories in them. Hopefully they'll bump her up some more. So far medicare has relented and agreed to pay. We've got seven more days of the tpn for sure. Hope they agree to keep it up until she can have her j-tube placement.

When we see Gupta next Thursday, he will review the pulmonary function test she had yesterday and the ct scan from her pneumothorax incident a couple of weeks ago. He'll make a determination then about her surgery risks.

Journal entry by Charles Ellis

Yesterday was a long day. Saw pulmonologist. He scheduled a pulmonary function test for today and will review Kate's ct/x-ray from her most recent hospitalization at our next appt. a week from today. Then we should know more about her fitness for surgery, her x-ray findings.

She feels much better on the tpn. A good sign, I think, that malnourishment was central to her difficulties. Things are happening rapidly right now.

Journal entry by Charles Ellis

Short note. Kate and I see a pulmonologist today. Two reasons: 1. assess her capacity to withstand the surgery to insert a feeding tube into her jejumun, the j-tube that would allow her to take in nourishment without all the hooha of the tpn setup: sterile this and sterile that plus a pump. 2. follow up on findings from her hospitalization for the pneumothorax. An x-ray there indicated she may have interstitial lung disease. This visit may include a full pulmonary function test.   

I'll get back to you after that visit.

Journal entry by Charles Ellis

Quick note to say that Kate feels better. "The tpn is really helping." It's still 24 hours though that will gradually taper to 12 hours for the same amount. The longer time period is to avoid refeeding syndrome, a problem with folks who have become malnourished.

Journal entry by Charles Ellis

Saw the surgeon, Edwin Smith, yesterday. He's a methodical guy, concerned about Kate's overall health relative to surgical risks. He insisted on the tpn and was glad to see it at work yesterday. (Kate's on a 24 hour feeding cycle with it right now so she has to carry the whole apparatus with her.)

We also saw Lisa Gidday, our internist, on Monday. As a result of findings during Kate's treatment for her pneumothorax (collapsed lung), Lisa gave her a referral to a pulmonologist. Smith wants her to have the appointment with Kelly Green (pulmonologist) before he'll schedule surgery. He wants reassurance that Kate won't end up on a ventilator. So do we.

The tpn has improved Kate's hydration a lot, good for her dry mouth and Sjogren's in general. It has also improved her overall, less jangly, no more feelings of impending doom. It has not however increased her weight. We're still stuck in that 80-82 zone.

OT and PT have both been out, so Kate's also got the gym rat thing going on. Well, maybe not a gym rat, but at least an exerciser.

Journal entry by Charles Ellis

A new chapter here. Mt. Evans' Hospice and Home Health Care (personally wish they'd reverse the order of those nouns) has begun to come out. First, nurses to help us understand and adapt to Kate's picc line and the changing of the tpn pouches every 24 hours. Both Julie and Michele live on Warhawk, very close by. Reassuring. The feeding helps, 950 calories or so over 24 hours, and balanced for her needs as I mentioned before.

Second, Kate had her first p.t. session yesterday and will have o.t. next week. This is important since Kate's activity level has been minimal for months.

It's a lot of change in a situation that has already caused lots of change. This is forward progress though. Kate sees Edwin Smith on Tuesday and hopefully the feeding tube placement will get scheduled and done soon after.

 

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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