Journal

Journal entry by Charles Ellis

Picked up Kate yesterday. No real news from this hospitalization. Anemia may require periodic iron infusions. She picked up some prednisone and antibiotic to see if they can calm down the inflammation in her lungs. Still no way to know what treatment might be effective for her interstitial lung disease. Her shortness of breath and desaturation up here, unexplained.

Journal entry by Charles Ellis

This morning, on her oxygen, Kate's O2 sats were 87 and trending down. Usually she's at 98 on the O2. On call doc said go to the e.r. The desaturation may be related to her ongoing struggles with anemia. We'll find out. Had to pack her tpn because she can't eat enough to keep her weight up. We're going to head out in a few minutes.

She's feeling much better in spite of this kink. And getting a bit ornery about her care right now. That's a good sign. She wants a second opinion on the lung biopsy and she wants somebody to take her anemia seriously.

Over the last six months the virtue of these e.r. visits and hospitalizations has been their ability to focus her docs on her presenting issues. May it be so with this one.

I will update you about this visit when I know more.

Journal entry by Charles Ellis

Alex, Dr. Gupta's nurse practitioner, saw Kate yesterday. A competent and action oriented young woman. She showed us the imaging from Kate's hi-resolution c.t. Kate does have some interstitial lung disease. The bulk of what showed up was inflammation, which is treatable, as opposed to scarring, which is not.

In order to treat the i.l.d. (interstitial lung disease) they have to know its etiology. That means a lung biopsy. Alex agreed with Kate's suggestion that they do the biopsy and the j-tube placement at the same time. One bout of anesthesia that way. Alex also said she thought Kate would come through the operation fine though she is of course at risk given her size and lung capacity.

We left with Alex saying that she would coordinate with the thoracic surgeon and Ed, Edwin Smith, the general surgeon to make that happen. We moved significantly closer to both the j-tube and getting some diagnostic clarity about Kate's lung disease with this visit.

Journal entry by Charles Ellis

Monday's post updated you on Kate's slow, but steady weight gain. I imagine she's past my arbitrary marker of 90 pounds as the end to her bleed episode on September 28th. This is six and a half months later from her nadir (a rhyme) of 77.

But, wait. There's more. Tomorrow (providing they don't close again due to snow) we visit the pulmonologist. A nurse practitioner will give Kate the results of her high resolution c.t. scan from last week. This should define any pulmonary disease and perhaps give its origin. The origin, Gupta said, is critical for knowing how to treat whatever the c.t. shows. If anything.

And that's not all. This is also the venue where Kate's readiness for surgery will be determined. Don't know if a nurse practitioner can clear her for the j-tube operation. That's what we've been aiming for since January and the stent placement.

The j-tube would allow her to continue to gain weight without all the rigmarole of the tpn. No pump. No sterile procedures. Just a bag of nutrient solution hanging somewhere while she does other things. Her ultimate goal is to weigh between 100 and 105 pounds. About Rigel's size. (our Irish Wolfhound/Coyote Hound cross)

Journal entry by Charles Ellis

Big news is Kate's continued weight gain using the tpn. It's slow, but steady, which is the way we want it. The schedule now is 14 hours with the tpn attached, 10 hours off. That gives her the whole day free of the extra tubing. An Option Care pharmacist, the company that mixes the nutrition bags and keeps us in the necessary supplies, calls Kate weekly. Kate's made a new friend.

Finally had the hi-res CT, checking for interstitial lung disease. Yesterday. We carried a dvd of the study to Colorado Pulmonary Intensivists. But. Dr. Gupta is out until the end of April. What? As you may recall, we need to see Gupta to get the results of the CT, which was delayed because they didn't turn in the referral. We also need to see Gupta to get Kate's assessment for surgical risk.

You may not recall that we thought this surgery, the one to place the j-tube, would happen over six weeks ago. Since then, this test, that office closed due to weather, forgotten referrals, and now a Dr. gone to the end of the month. Sigh.

The good part is that Kate's doing well on the tpn and that it's being covered. She's much happier now. Her sister BJ visited over the weekend. Good to see her. Mostly positive except for the hurry up and wait.

Journal entry by Charles Ellis

A friend thanked me for these updates and I realized I'd been doing them for six months now (as of today). Didn't intend to, but Kate's recovery from her bleed has proved complicated, not yet done. I understand if you're tired of these, just click off updates if they no longer interest you. My arbitrary criteria has been this will be over when she reaches 90 pounds. She's past 85.

Journal entry by Charles Ellis

Finally got the high-res ct scan scheduled for next week Tuesday. Not sure why it took so long. That will complete the information gathering stage pre-surgery for the j-tube. The pulmonologist still has to give an assessment of Kate's fitness for surgery. Presumably that will happen when we get the ct scan report.
Otherwise she's working her pt/ot, getting plenty of good nutrition. Things seem headed still in a positive direction.

Journal entry by Charles Ellis

Pulmonologist put another stay on the j-tube surgery. Wants a hi-res CT scan to check for interstitial lung disease. No diagnosis yet. Pulmonary function test didn't prove helpful for some reason. He does say Kate is high-risk for post-op complications like a ventilator, pneumonia.

On the upside her weight has hit 85 and the new tpn regimen gives her 10 hours off the pump. She looks and feels much better.

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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