Journal

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.
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Journal entry by Charles Ellis

I'll see Kate around 11:00, probably spend the afternoon there, so I'll have more up to date info later today.

As I left yesterday evening, we had the somewhat disappointing news that her hemoglobin had slipped a bit and that she may have bled again. That last is a little unclear since there may have been some blood left in the bowel even after the operation on Sunday.

I asked her how she felt and she said, "Down." No doubt. 8 units of blood, a ct, many pokes, a nuclear blood scan, a failed embolization attempt, then bowel resection. Plus, no solid food since a week ago today and sleeping (trying to) in a hospital bed. Too much, except to save a life.

She so appreciated the flowers and gifts and cards. They help buoy her spirits. Thanks.

Until later today.

Journal entry by Charles Ellis

Kate's requested no phone calls until she feels better. I'll let you know here.

Swelling in her right arm proved to be a superficial clot that can be managed.

Her last hemoglobin was 10+, which is much, much better than the 6 she had in the E.R. She has continued to bleed some though there are signs that may be tailing off.

The surgeon ordered lidocaine around the surgery site. Trying to reduce use of opiates which interrupt bowel function. She says that has helped.

We learned today that she will exit Swedish for a rehab unit, probably in Littleton. When she can do that is still unknown. Her bowels have to become active, her hemoglobin has to be stable, and no more bleeding. Could be a while at Swedish yet.

She (and I) are pleased with the care at Swedish. The nurses are caring and attentive. The docs approachable and informative. Wish we weren't in a position to have learned this, but we are.

Rabbi Jamie came by today and we had a good visit with him. He teaches in Denver at the Kabbalah Experience on Wednesdays.

This one's tough. Hard on Kate, on the dogs, on me. The alternative, however, is worse, much worse. Hard trumps grief.

Journal entry by Charles Ellis

Right now, Kate's not feeling well enough to receive visitors. I wish she was because it would buoy her up, I know. But she's not.

I'll be going in around 11 again today. More information after that visit. Thanks for caring, and for understanding.

Journal entry by Charles Ellis

Not finished. Good news: hemoglobin has remained above 9, down from 10, but still well above 8 from the day before. Surgeon says bleeding, some, may gone on for a bit as the colon empties.

Kate looks better, much better, than she has. She says she still feels pretty crummy, though. She had ports installed at her surgery site to drip lidocaine directly into the colon. She says that's helped.

However, she is still bleeding somewhat and the nausea continues due primarily to the still dormant colon. She is getting some nutrition and will get some marinol, a thc based med that we will hope will hope with the nausea.

She may not need to go to a Rehab center afterwards. Depends on how she does with getting up, walking. Tough with the nausea. I'm cautiously optimistic.

I told her I thought she'd turned a corner. I just hope it's the right one.

Thanks again for thinking of her. Looking forward to transmitting better news when I can.

Journal entry by Charles Ellis

Kate's sister Annie is on the way here from the airport right now. 9:50.

I called Kate to tell her. She said she'd gotten almost 14 hours of sleep, that the nausea has abated and that her bowels have begun kicking in. That means, btw, that she's farting. A very very good thing. Tell your favorite 8 year old.

She is also receiving two different sources of nutrition, one intravenously and the other through nasal tube. This last fed some food like slurry which the surgeon hoped might encourage her colon. Apparently it worked.

If her hemoglobin remains stable, we may be on the upward curve of this incident. I'll be seeing her after Annie gets here, so more later.

Journal entry by Charles Ellis

Kate's ok with short visits, but still request no phone calls. She needs to sleep.

She's doing better. She has nausea now only when her surgical pain acts up. Her hemoglobin is stable above 9. P.T. came in and got her out of the bed and into a chair. She did some simple exercises and was still in the chair when I left. She's gotten some nutrition and will get more, aiming toward eating as soon as she can tolerate it.

Talking discharge maybe Tuesday or so. Doc said if we wanted her to come home rather than to a rehab center, we'll aim toward that. What we both want.

Not over, not at all, but headed in a positive direction. It was a week ago this morning that I took her to the E.R. A very difficult week for her from many perspectives and these gains feel even sweeter looking back.

Journal entry by Charles Ellis

Last night was tough. Pain returned and along with it nausea. Little sleep, also very disappointing.

Better during the day. Annie saw Kate in the morning, I went in the afternoon. Just got back.

Pain was better, but both pain and nausea had begun to return as I left. Not as awful, but any is the wrong direction. Might be a bladder infection. We'll find out tonight.

The good news is this: her H&H, hemoglobin and hematiocrits, remain stable to just a tick better. Means they've probably resolved the bleeding complaint. We still don't why she bled, may never know.

Frustrating. Don't know how this will affect her return home.

Journal entry by Charles Ellis

We are into the fourteenth month since Kate's bleed September 28th, 2018. She's had victories: the stent in her superior mesenteric artery. The feeding tube. Her weight now stable above 100. All wonderful.

The continuing problem has been her lungs. She's on oxygen 24/7, can't walk far, has little energy. There was, too, a new bleb in her May c.t. scan that was that most ominous of words: suspicious. Our first encounter with pulmonology was at Colorado Pulmonary Intensivists. It didn't go well for a variety of reasons, so Kate asked for a second opinion from a National Jewish doctor.

Dr. Taryle. Saw him in September. He wanted another couple of data points before proceeding. Another pulmonary function test and another c.t. Those were done in the past couple of weeks. Saw Taryle today.

The pulmonary function test showed mild impairment. Only mild. Good news. The c.t. scan was unchanged from May. That's six months. The bleb is probably part of the scarring process. Her lung disease is stable. He sees no need to do a lung biopsy at this time. Kate was happy. She's a high risk candidate for the surgery.

He also sees no need to prescribe any medication for her since the few drugs, mostly new, for fibrotic lung disease all have nasty side effects. The benefit/harm ratio is not sufficient to make treatment a good idea.

We left, scheduling another appointment for March. The lung biopsy is off. Kate feels relieved about the status of her lungs. Me, too. Now we just have to get used to this unusual situation.

Not only did she have successful cataract surgery on both eyes in October, her lung disease now seems mild and stable!

Unless things change, this will be the last update until next March.
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