Bill, Wednesday July 31

The last day of July. Wow.

Here's an update from Ayn (soon after "C" & I left the hospital): "Speech pathologist just came by to deflate the trach. Bill got to have some grape ice chips. Everything looking good."

And a later addition: "Yes! More good news: they decided he no longer needs the constant tube feed and now will start hooking him up 5x per day instead"

Bill, Tuesday July 30

Smart Phone = Short Post

Today's highlight: a major haircut!  Well maybe more accurately described as a hair whack!

Bill, Monday July 29

Two rounds in the cardio chair today. Why is it called a cardio chair? I dunno.
Physical therapy, including being pulled to sitting position at the side of the bed (not staying there on his own accord).
How about a fist bump with a star burst! (Thanks to sister Brooke for showing him the move at her last visit).
Blood tests and infection markers are looking good.
Moustache trimmed.
Ayn asked, and Bill agreed, to have his hair shaved. That may happen tomorrow!
More pushing and pulling with his arms or legs on command.
We tried having him write on paper - just practice with lines, "L's," and circles.
He is trying to mouth words, but he doesn't have us trained well enough to understand.

On another note: we had a nice visit with medical student "Simon," who saw Bill early on in neuro ICU. Simon lives near the facility where Bill will be going, so we got all sorts of recommendations for eateries (I'm in big trouble, one is a bakery). In return, we encouraged him to retain his positive, personable approach as he continues in his training and career.

Bill, Sunday July 28

To explain yesterday's picture-only post, not too much to report!

Ayn, "sister-nurse Dianne," and I visited a skilled nursing facility yesterday. We got to see patient rooms, rehab rooms and equipment. An occupational therapist was available, and we liked her approach and demeanor. Of course we related what didn't work with Bill's last transfer.

(On that note, there was one aspect of "The Transfer Failure" that was not a problem: the respiratory therapist.)

But we're not rushing the move. He will finish the round of antibiotics Monday, and the morning doc said they will reevaluate if he needs more (ugh). But if Tuesday is a clean day, with strong blood tests, Wednesday might be the earliest we're comfortable with moving.

Yesterday his sister and grandma visited at different times; sister got a good visit (and a hug from him), but he fell asleep shortly after Grandma arrived.

We hope all is well with you, dear readers!

Bill, Saturday July 27

Thanks to Nilesh and the Oracle Team

Bill, Friday July 26: moved from ICU to "regular" room

If not for this blog, I might not have a clue what day it is!

Bill is able to step down the level of care needed, so he moved from ICU to a "regular" room. Less monitors are stuck to him. Ayn looks forward to sleeping on the comfortable window seat instead of on the ICU waiting room floor. I will never understand how she was able to do that -- almost three weeks!

Physical and occupational therapy continued today. He was in the "cardio chair" and they held him in an upright sitting position for almost ten minutes. Might not seem much, but quite a workout for him and a step up in his activity. He is able to follow commands to kick his right leg, point toes, and pull up.  Then we have some passive movements to keep joints and tendons loose until he moves up to working those on his own.

Bill's daughter visited in the morning. She was thrilled to see his progress. Compared to the last time she saw him (about a week), she was relieved to the point of tears. She gabbed at him about what she has been doing and her plans for the day.

Tomorrow we will visit the skilled nursing facility where we hope his next step is in the journey. Along with Bill's "nurse sister," we have to be careful to get all of our questions answered while not pelting them to the point of surrender, "oh no, we can't take him."

My husband had the very sweet thought of wanting to send a fruit basket to ICU staff as a thank you for all the wonderful care they provided.  But the hospital gift shop doesn't have anything of the sort; they suggested food services, but "Mercedes" said they also weren't set up for that. So if he wants to contact Fred Meyer or some other store, I wish him well, but I just can't divert my energy there. I'm amazed when people can cover all the bases!

We left a 'thank you' note on the whiteboard in Bill's ICU room -- does that count?

Bill, Thursday July 25 - updated

Bill still doesn't have much control of his left side, but look at all the stuff he discovered he could do with his right hand today:

1. Take the toothbrush (really a spongey thing), get it to his mouth, and scrub all around.
2. Put his glasses on
3. Take the washcloth and rub it around whatever is itchy on his face.

He can also lift his hand up for a high-five, or lift his fist for a fist bump. He doesn't quite move it in to meet our hand, so the depth perception isn't quite back yet.

"Hey," we can imagine him saying, as he rubs his chin and neck, "What happened to my beard?"

UPDATE

Ayn caught me up on another detail: she has been giving him gentle hugs all along. This evening she asked if he could hug her back, and he slid his right arm around her. She told him she loved him, and he mouthed, "I love you."

Bill, Wednesday July 24 mid-day

When Bill was running a temperature yesterday, his breathing was very labored. So he went back on the ventilator overnight to rest.  This morning the vent came off again. They are running a couple of broad-spectrum antibiotics for 5 days (or maybe they said 7). Some tests for specific bugs or culture sites have come back negative, and others may take up to three days to culture.

And he was so alert when we came in! Eyes wide open as if everything was normal, and they had the History Channel running.

Bill also gave the first thumbs-down we have seen. He has given head shakes for "no" in the past, but this new version of "no" was fun. And he reaches to adjust his glasses to his liking.

We had started our own made-up PT a few days ago, mostly to stretch his left arm and hand. His left side is where he has not had as much responsiveness, so we want to keep the muscles and joints stretched out. Today's nurse gave us some more specific moves, including his left leg.

It has been great to see him "back" and even better after the last couple of days of chaos!

Go Bill, you rock!

Bill, Tuesday July 23, Failed Transfer

Up front, Bill is good. But he is back at the hospital, and the 8 hour trip to the acute rehab facility was a trip to Hell.

I'm going to itereate and reiterate! Bill is okay, and what I am going to describe is not a setback. More of a turning around in a (very big) circle

The very short version of the story is that Bill spiked a fever, and the rehab doc saw the lethargy as reduced neurologic function. Couple that observation with the fact that Bill's blood pressure medicine was not maintained, as he had several hours of BP running 180 to 200, what do you get? Hmm, maybe another brain bleed: hemorrhage.

Back at the hospital, a CAT scan (or CT scan, is there a difference?) showed he did not have additional bleeding, so no new drain tube. A couple of antibiotics for the temperature (39 celsius, 102.2 F), cultures to try to ID a bug. Re-admitted to neuro ICU.

Now for the long story. Wait, bullet points are easier right now:

• The rehab facility representative (Anthony) told us yesterday they would make an exception for Ayn to remain, and not be kicked out in the evening. We were very happy. He promised he had cleared it up and down the chain, and gave us his backup contact (Mindy).
• The hospital case manager made arrangements for the transport. She asked if I thought 3 or 4:00 was better, and I said definitely 3:00 to get started on Portland traffic earlier and not run into shift change at the facility. 3:00 was confirmed a couple of times.
• Transport (ambulance) arrived to pick up Bill. After 4:00, so the six mile trip was complete about 5:30.
• You guessed it, change of shift is 7:00 so everyone is sort of winding down their work.
• A little background: the goal at the hospital had been to keep his BP below 160. Bill started at the facility at 161.
• We started asking about the normal 6:00 meds about 6:15. "We're waiting on the doctor to write the orders. The doctor said she's not concerned about BP unless it gets in the 180's." We asked for the latest BP, came up at 167. And we knew it certainly wasn't going down on its own.
• I left a voice mail for Mindy, who was supposed to be the go-to person if we had any problems.
• In the meantime, the "house supervisor" said Anthony had not cleared with administration anything about Ayn staying. But she could use the chairs out by the lobby.
• We didn't get to talk to the night shift doc until 8:00
• Bill had been in a flat position  since about 3:00. Ayn and I took it upon ourselves to reposition him -- this is important to prevent bedsores. We did not have pillows, so we made do with rolled up towels.
• BP at 8:30 came up as 183. Well that got people hopping finally, but it was another 15 minutes before two meds were administered. 20 minutes later BP was starting down, at 170.
• I went back to the apartment to rest. Ayn texted me 11:30, "they are still working on the orders," and for blood pressure, "they say they're watching it."
• 1:40 phone call from Ayn, "They are kicking me out. They say I can't stay. The house nurse says she's never heard of Anthony. And she said the 'sitting hours' were over at 9:00. She said I can't use the lobby chairs because they use that area for their nurses meetings." I got to the facility to pick her up by 2:00.
• Sitting outside in the car, we went over everything that happened. When Ayn expressed concern about Bill to the night nurse, he said, "Well he's not like the other really frail people here." I was in shock. I left another voice mail for Mindy (as of this writing, haven't heard from Mindy and I don't care). Ayn said one BP had been over 190.
• I finally decided I would go in and discuss the overall care and plans with the staff.  Yup, at 2:00 in the morning.
• As we approached the door, two security officers came out. Our first thought was, "OMG, they are going to block us from re-entering." But no, the older of the two said the charge nurse asked him to find out if we were still there, because they were calling for an ambulance to take him back to the hospital, and he possibly had another brain bleed. When we got to the floor, we were told he had gotten to 200 on BP.
• At the ER, the nurse and Dianne (Bill's stepsister, an RN), were trying to figure out what meds had been given at the facility. They had a copy of the chart, with the med orders, but the chart did not show the actual administration of the meds. I told them he got two meds at 8:45 and one of them started with an "L" but that info is certainly not something they can rely on in a critical medical situation!

As a reminder, dear readers, Bill is fine now, coming off a fever, and the CT did not show additional damage. We will all move forward once again!  But any guesses on where the path will NOT take us?

Bill, Monday July 22, mid-day

Today's plan: Bill will move out of ICU and to a rehab facility this afternoon. So if I don't post again this evening, that doesn't mean anything is wrong. It just means we're busy settling in.

Bill did not go on the ventilator last night, so at the time of this post he has been off and breathing on his own about 30 hours.  Respiratory therapy places a regular oxygen mask at the trach. The oxygen mask does not do any of the "push" or "pull" that the ventilator did, the mask just provides extra O2. This morning the mask is turned down to just 40% and he's doing great at that level -- and could probably be taken off completely, but it doesn't hurt, right?

His right hand is busy, wanting to touch pillows and belts and stuff, reaching up and scratching his nose or his beard (growing back rapidly, by the way).  We have a small stuffed bear to occupy that hand, mostly to protect the feeding port.

So what is the rehab facility, what happens there? Well, they will be fairly aggressive in working on trach care (and weaning of the trach), eventually swallowing and other occupational therapy; physical therapy (muscle strength, flexibility, range of motion); and other assorted activities. Looking forward to it. And yes, Ayn is still staying with him all the way!

Bill, Sunday July 21

I asked the nurse this morning, "Since Bill completed yesterday's plans I'm not sure what to put for today.  He breathes off the ventilator and he went off the IV meds for blood pressure."  Nurse, "How about 'repeat'?"

So he did. Plus she removed the central line (sort of an IV through the carotid).

We believe tomorrow's discussion will be around step down care. And maybe a decision on where that will be?

Bill, late Saturday update July 20

Bill had eight hours off the respirator breathing completely on his own Saturday.

Blood pressure is controlled completely through oral meds, no IV, which is a significant medical step.

Bill, Saturday July 20

Bill ROCKED his breathing test!
He has been off the ventilator over 3 hours now and they will just let him stay off as long as everything looks good.
This is a sea change from what we were told yesterday and I did not want to pass on to everybody:  the possibility that he might never come off the ventilator.  Ayn and I were devastated.

You show them Bill!

Now to share a random story.

 Bill's sister and husband  visited today. This shows his responsiveness:

"Bill, hey Bill, is Brooke smarter than you?"

Head shake (no)

"But Bill, this is Brooke. Am I cuter than you?

Head nod (yes)

Bill, Friday July 19

Today is Ayn's birthday.

We had discussions about transition out of ICU. The step-down could either be to the hospital's stroke unit, or outside to a long term acute care facility.

The driving factor is whether he can be weaned from the ventilator: if he can, then transfer within this hospital. If he has to stay on the ventilator past this weekend, then a transfer outside might be in order, and plans are being made in that direction. We can see on the monitor that he is doing at least half the work himself in breathing.

The outside facility claims to have the best protocol for getting him breathing on his own, "So good,  Emanuel Hospital has copied it." The place is still in Portland. Ayn is relieved in that they cooperate with family, and she could stay with him.

POST-NOTE: Bill just had a great breathing test! He was taken off the ventilator. His "sats" (saturated oxygen level) stayed really good, and he breathed completely on his own for the one-hour test.

Bill: Thursday, July 18

1. The pressure in Bill's brain is under control, so the drain to remove fluid was taken out.

2. The breathing tube was removed, and a tracheotomy inserted. This will reduce the risk of ventilator-reduced pneumonia. It will also be less irritating for him, which should help with blood pressure. Everyone says there are usually huge improvements without the breathing tube. The trach is removable once he "passes" his self breathing tests.

3. The feeding tube was removed, and a "PEG" port inserted. Again, another move away from a certain type of another irritating tube, reducing other risks, etc.

So lots of good things today!

Bill, Wednesday July 17

The plan is moving forward to remove the breathing tube. Today's step is to clamp the brain drain for 24 hours. If the cranial pressure stays in the acceptable range then breathing tube can be removed.

There is not much else to report. yesterday was  less active: kind of dopey. But today is more active.  oh, and how could I forget today has some very appropriate "yes" nods or "no" head shakes in answer to questions. yea!

Bill, Tuesday July 16 morning

Ayn's Report:

MRI went fine. Initial report is everything looks good. No other problems (like a mass) that would have caused the bleeding.

Bill, Monday July 15

Last night, the ventilator was dialed down in preparation for weaning off the ventilator.

a morning chest xray shows that the lungs are better. they didn't say all better but I'm assuming they meant improved at least!

and just a note for tomorrow: I won't be back at the hospital till the evening so unless Ayn passes on some significant news it will probably be a very late post

Bill, Sunday July 14

( you can tell when I am posting from my phone. the posts are shorter because it is difficult!)

The pressure in the brain is greatly reduced. Example: yesterday's number was 22 and today it is 12.

also, today he has been much more alert and responsive. that does not mean he is fully awake but he does seem to respond to commands and he is also more aware of the fact that something is going on around him. he is very actively trying to reach for the tubes In his head and other things around him.

the breathing tube should be removed within a couple of days!

Bill, Saturday July 13

Not too much to report today except good news! His kidney function is improving and  scan on his brain looks like an improvement so yea!

Bill: a good news item I forgot earlier

Everybody wants good news.

When Bill was brought to Emergency, he was not able to respond to anything on his left side.

The next morning, he had regular responses.  Yeah!

Bill: levity

Hopefully this isn't inappropriate but it seems (to me) that this is a moment to be enjoyed when everything has settled down.

Ayn reports that the evening Bill fell ill, they were watching the Giants baseball game. Before Bill went in for a shower, the Giants were ahead by two points.

When Bill came out of the shower, the Giants were down by one.

Bill leaned over the counter, and Ayn thought "Oh, no, he saw the score."

We wish it were so.

Bill, Friday July 12

Current status, what is and what is NOT:

Bill is sedated. So no, he is not awake. No, this is not an induced coma.  Today they changed to a 'lighter' sedation medicine.

Bill has a breathing tube. No, he is not on life support.

His kidneys are stressed. No, they are not failing. No, he is not on dialysis. No, he does not need a transplant.

A cardio study was done through ultrasound, and there were no problems (no valve problems, no fluid around the heart).

A liver/gall bladder study was also done, and was clear (no problems).

He was taken off the drug study. If he was getting the actual drug rather than the placebo, then extra iron would be sent to the kidneys and they don't need that stress right now.

Technically, he had a hemorrhagic stroke, assumed to be from high blood pressure.

Fluid continues to drain from his brain. There is no timeframe on how long this will continue (yes, we would love to know too). Therefore, we have no idea when he will come off the various tubes, have less sedation, and "wake up." And we don't know what is function will be, although we're thrilled he has movement on both sides of his body.

Sure we all cry. (Me, his wife, his daughter, sisters...). The guys tend to be pretty dang quiet.

By the way, has everyone done an advance directive? Get on it!

Bill, late Thursday July 11

Christine is so anxious to have her dad wake up. He is her rock and the one she talks to when she needs to talk to somebody. Now she can't talk to him and have him reassure her.

Bill, Thursday July 11

C wants everyone to know it's free Slurpy day (7 Eleven).

No big news this morning, but here is some catch up information. Late Monday, scan (CTA) was done where they inject dye in the bloodstream and scan as it enters the brain. They also wanted to do an angiogram (which starts at the femoral artery - thigh- instead of at the neck) BUT they kidneys were showing some stress. The kidneys weren't in danger, but the dye is toxic enough to not be used if the kidneys aren't "happy." Yes, a doctor actually used the word happy.

One of today's order is for a renal consult to have those experts evaluate the issue with the kidneys.

Another piece of catch-up: family medical history.  As I mentioned, the doctors are not only treating his crisis, they want to know what has caused the situation. Long term high blood pressure can cause a bleed, but they say he's much too young. I  could tell them my family side, with no young-onset problems, say age 40 or 50 or below.

But Bill's birth dad? Umm, well I haven't had contact in some 33 years? His dad was 20 or 21 when we divorced, so not history on him at that point, and I was guessing the other grandparents were about 40 with no known problems at that point. A great-grandmother passed away from a stroke right about those days, but she was about 70 I think.

I reached out through Facebook to see if I could find the right person, and his son, and asked if they would share any data. (My ex tried to friend me on FB a couple of years ago, which was just weird.)

We will see if there is any response.

Bill, Wednesday June 10

In ICU, Bill has a nurse who is just assigned to his care. That worried Christine, his daughter. And while we told her flat out that it is serious, the nurse helps to monitor a whole lot of activity.

What activity? Golly, what activity is not happening?

Every hour, she (or he, there have been a couple of male nurses) turns off the sedation and they do a neurological evaluation: pupil reactions, does he respond to "squeeze my hand," does he react to sensation at his feet. IV bags empty and are replaced, and everything has to be entered in the record. The lift team comes every few hours to reposition him. The nurse clears the breathing tube and suctions the lungs, charts the brain drain and catheter outputs.

Every morning the horde, no excuse me, the team of neuro (this is a teaching hospital, so there are a lot of people involved) consults outside the room on his status and develops plans for the day. There might be new scans, or should his feeding tube diet be changed, or moving blood pressure meds from IV to oral.

Mid-day Wednesday, the drain stopped draining. A flush was done and they would wait for a bit to see if it cleared, which it did but much later.

Late Wednsday, two residents (I think, could have been a Neuro Fellow in there I guess) came in and announced he had a low-grade fever (101.6 if my conversion from Celsius was correct).. He was going to have a chest x-ray, cultures, blood samples so they could try to identify the source. Monday evening when all this started, he had vomited more than once, and some residual got in his lungs, so that was a worry. The x-ray showed some cloudiness and they started antibiotics. His temperature is back in an acceptable range.

But I have to comment here. The nurses have been super, but a few of the doctors/residents/fellows have not. The two guys I just mentioned, bringing the news about temperature? I asked about the drain problem, and got a dismissive response (almost "Can't help you there."). When they left I told Ayn I hadn't had the urge to flip someone off in a very, very long time.

Bill, Tuesday July 9

Bill is sedated for two reasons. First, it helps keep the blood pressure down. Second, he has a breathing tube so sedation keeps him from reacting to the irritation.

He also has a "regular" IV, and a central line (through the coratid artery), and an "A-line" which gives constant feedback on the blood pressure. A feeding tube was inserted on Tuesday, and some "oral" meds are occasionally given through it.

Dr. Clark from the stroke unit came by and explained an investigational study that is going on. and of course he asked to include BilI in the study.

In cases of hemorrhage or brain bleed they are looking to use chelation to grab the extra iron from the brain blood and flush it out to the
bloodstream.

They don't want extra iron left because that damages the brain. It basically causes rust in the brain.

My son Bill and a medical emergency: Monday July 8

Here is an outline of the events and I will fill in as we have more information.

The symptoms were similar to a stroke. Bill was taken by ambulance from home on Monday July .8.

Ayn reports they asked over and over again about drug use.  He is relatively young (at 35 years old) and there's not usually an issue with high blood pressure at his age causing stroke or a brain bleed.

Emergency staff did blood draws and a cat scan which showed the brain bleed.

He was moved to neuro ICU; an IVD "brain drain" (my term) was inserted. He is sedated, and on a med to keep blood pressure down, and much more.