Tuesday, March 19, 2019

New bed, more awake

Last updated 10:00 PM Thursday (March 21, 2019)
Keith is still in room 560, 5 West

9:30 AM Tuesday (March 19, 2019)

Keith is in room 560 in 5 West. This isn't 7 South. I see the new south building out the window. It looks nice. :-) One of the student nurses said he overheard that they're still trying to get Keith into 7 South. Seems they needed his ICU bed. I called the ICU before I left home, and was told he was still there. So I went there and pushed the button and said "Keith Dodd in 3, please!"

"Come on in!" So happy.

The guy in #3 wasn't Keith.

So I began my trek to find 5 West.

The nurse just told me that 7 South is "The Penthouse." I hope they do move him there, then. :-)

So before anyone visits Keith, check where he is. I'll leave notes here.

This room is extremely small. It was probably built before the fancy plastic beds were invented. I'm picturing some iron bedframe from 1920, but it's not that old, either, I don't think. (1960s, it was built, seems.)

Keith's not happy with the food or with thickened liquids. Unless he eats, though, he's still on tube feed and can't get out of here.
They brought him sugar-free Jello. "Vile," he said. But he said his throat hurts, from the respirator tube, and food that's cold hurts.

Keith kept asking which ribs were broken, and finally a (frightening) report:
2nd through 7 on the right
1st through 7th on the left
and sternum

That's thirteen broken ribs. Hiccups must really be awful. He didn't want to eat because he thought it was causing hiccups this morning, but then he hiccuped a few times even though he didn't eat.

The view is a reflection of this building in a newer building.

10:10 AM Tuesday (March 19, 2019)

Two doctors from Pulmonary were here. They're the ones with the news about which ribs were broken. They also said that his chest tube, which has now been in for over 16 days (since March 3 mid-afternoon, and this is day 17, I think) is sticking into the hole in his lung. Oops. The idea was for it to put suction in the area outside his lung, so the lung could re-inflate and heal. They put a clamp on the tube to see whether it was making any difference anyway. If it's not, they'll pull the tube. THEN the hole in his lungs can start to heal. If his breathing becomes difficult, they will unclamp it, and might need to put in a new tube.

There's something about this I don't understand, because they said if they take the tube out and he has problems they might need a new tube, but that with the tube that's in there, they can't pull it out of the hole just a little bit and leave it in.

Bad news about the penthouse. He was going to be in the care of the cardiac team, but because there are other issues, he's assigned to internal medicine. Pulmonary would have been consulting for cardiac, and now they're consulting for medical.

I think. They have hospital jargon/code on top of medical terminology here.

Keith is snoring. I don't know if that's good or bad, considering all. I'm going to go look at his readouts.
Seems fine.

Maybe "New bed, more awake" isn't the best title for something that ends up being about him being asleep and snoring.
The sleepiness was something one of the pulmonary doctors said was a problem that cardiology thought would be better handled by someone else.

2:30 PM Tuesday (March 19, 2019)

Pulmonary doctors put a clip on the chest tube (drain), sealing it up for a couple of hours to see if it was making any difference. If Keith's breathing became difficult, the nurse was to remove the clip. He was breathing fine, so they pulled the tube out. They'll ask radiology to look at last night's CT scan to see if they think there is blood outside, or just water or what. Some circumstances might cause them to put another smaller tube in, but if not, then they'll be done with him (pulmonary will be).

People keep on and ON coming in here and not letting him sleep. If today had been scheduled and scripted for humorous/irritating effect, it would have been difficult to plan this many credible excuses to come in. And I've been in and out, and furniture has been rearranged for various needs and purposes (the two guest chairs and the hospital table). it's about as fast-paced as Noises Off, though a few times (unlike in the play) someone has been waiting for an entrance, while another character finished a scene.

The photo above is what I can see out the window, not what Keith sees from the bed. Here's Keith's view:

6:45 AM Wednesday (March 20, 2019)

Yesterday late afternoon I was surprised by two things I hadn't known. Things were updated or changed and I had missed it. One was that they re-instated and kept) the feeding tube bag (they had left the tube for drugs). The word "tube" is starting to grate on my emotions in general. So he's not hungry, and all of the real food (such as it is—thickened liquids, thickened fake milk, solid foods he might not be able to eat even if he were well) is spit right back out, if he will even try it. But he's nauseous, and threw up again last night.

The second thing I wish I had known sooner was that the drug they gave him for nausea (sorry I didn't note its name) makes him very sleepy. Too sleepy to speak or think clearly. I thought yesterday was a big step backwards, but it was about being tubefed (...something that nauseates him?) and having meds for nausea that make him less coherent, and very weak.

I called this morning and was told Keith had a good night, no complaints of pain, threw up once, but had no ill effects on heart rate because of it. That sounds pretty good. If he's sleepy, and sleeping, without opiates, that's great. The anti-nausea drug might be an opiate, I suppose, but I don't want to think about it right now, because I can't go in today until late afternoon. It's a babysitting day! :-)

5:20 PM Wednesday (March 20, 2019)

I just got to Keith's room. I left home about 4:40. I think half the time was driving, and half was hiking through the hospital, though I did find the room in one shot this time. Good for me. It's a crazy maze.

Keith is asleep. He's so asleep he ignored the food-delivering attendant, her talking to him, me talking to her... anyway, very asleep.

Marty was here mid-day and said Keith's voice was strong nd he was aware and alert, joking with nurses. They had put in another chest tube. Keith told Marty it had been half an hour, but Marty said it had drained so much he figured it must've been longer.

I can stay a couple of hours and then I need to pick Devyn up from gym. Things are moving back toward more normal, in a few more ways, sometimes.

10:50 PM Wednesday (March 20, 2019)

I did leave the hospital about 7:30, but still I know a bit more.

Keith threw up there. He was still super sleepy, but had not been given anti-nausea drugs (which had made him sleepy the day before). Without even tasting any of his dinner, with no ice, nothing, he threw up. I was quick by, so it wasn't bad, and it didn't affect his heart rhythm. Mim, his nurse Tuesday night (and tonight again) said that he threw up then too, but his heart stayed good.

Today what he had in way of sedation was fentanyl, for the insertion of a new chest tube (the third), and 5 mg of Oxycodone for the discomfort of the new tube afterwards.

Keith was trying to sleep, but various things kept waking him up, so I decided to talk to him a bit since I needed to go. It was fun. He wasn't hallucinating. We talked about very routine kinds of things, like which bank account what bills should be paid from, and which were automatic. It's not very exciting objectively, but knowing he was that cognizant of things thrilled me.

Just near the end I was told that the ICD (implantable cardioverter defibrillator) might be put in tomorrow morning. WHAT!? This disturbed me. I had been told it would be done the day before Keith was leaving. Also, I heard the hospital is full. Also, I've heard little snippets of this and that, about skilled nursing facilities, and rehab hospitals, and it was a swirl. Tomorrow I'm going in early to see what's what, and to find and talk to the social work case manager (each floor has one, I've been told) to see if there is a plan and what it might be.

Since Keith can't stand up, or eat, it seems to me I can't take care of him yet. Chest tube. Feeding tube.

In the past couple of days I've been told by two different people that they were there the first day. One was in the emergency room when Keith came in. One was up in the ICU when he had another cardiac arrest there. They remarked how well he looked and how happy they were to see him that way (alive, I thought they meant). Seems this is unusual.

I told Rebecca the nurse that Dr. Ling had said only 30% of those with a cardiac arrest outside the hospital live. She said she thinks it's fewer than that—that it's not that high for people who have a cardiac arrest AT the hospital. And Keith had both of those, May 3. One or two at the park, depending how it's counted, and one in the ICU. Thinking back tonight, I think what he said was 30% get to the hospital, not that they live through the emergency room or later treatments.

I talked to Ashlee and Marty about it some. They knew enough to know the numbers were very small. I just had a 30% in my head. I went to find more.
U.S. Cardiac Arrest Survival Rates Around 6 Percent for Those Occurring Outside of a Hospital
It's short, and (literally) clinical, but it made me appreciate Keith being alive and wanting to talk about checking accounts, and when payments are due.

Ashlee said she thinks for people with two cardiac arrests, the chance of living is less than 1%. Keith had two or three on the same day.

I need to stop reading that stuff; it's scary. But Keith is alive, complaining about food, and talking about when to pay which bills.

9:00 AM Thursday (March 21, 2019)

I came in early to find out more about today's plan for the insertion of the ICD. His tube feed was cut off at midnight, so they could do this little surgery. I looked up the cost of the device and I'm sorry I did. Keith needs to live about twenty five more years, I think, for that much, but they don't go by costs here. They go by "This will save his life," and "95% chance of surviving a cardiac arrest with this."

It seems I'll be happier if I stop googling stuff.

Physical therapists came, two, female. They helped him sit, and then he stood up! Honestly full height, without slouching or squatting. Two seconds, and then he said "That's enough." They helped him comfortably back into the bed. He was shaking, when he was up, but he was really up, and it was good to see, for the first time in 18 days or so. Counting the days doesn't work well. The first day he was here was March 3. But also on March 3, he was walking, driving, fencing.

10:30 AM Thursday (March 21, 2019)

A pulmonary doctor came and said they will leave the chest tube in a while, because it collected a liter overnight.

The nurse came in and gave him this'n'that. I couldn't hear everything, but none of it was painkiller. and some was blood pressure med, blood thinner, aspirin for "a plateley aggregator," Atorvastatin, potassium... Part of it is to want to prevent blood clots, because of the upcoming insertion of the ICD.

No one knows when the cardiac guys will do what they're going to do, because if there are people who aren't stable, they go before now-stable Keith.

6:05 PM Thursday (March 21, 2019)

I was too tired to write, earlier. The ICD was NOT inserted today. They were wanting to do it when Keith was stronger, and more tubes were out. Communications were imperfect, and when they said NPO / nothing by mouth from midnight (meaning also no feeding-tube food), the further message that they meant IF the chest tube was out, and if the feeding tube was out was not processed or passed or explicit or something. So Keith had not a drop of anything from midnight to 3:00 in the afternoon or so for no good reason.

Some people came by, though, notably two doctors from pulmonary who wanted to take a sample of what was coming from Keith's chest tube, but they needed fresh and current, and he didn't provide enough while they were there. The two liters in the collection recepticle weren't clean enough for use, or something. They hadn't been so particularly interested in Keith himself, as the mystery of what could be draining for so long from a person's chest cavity. This is the third tube. He doesn't have fever, his white-cell count is fine... The tube might come out tomorrow.

The speech therapist came by, the first one he ever saw, and approved water (and thin liquids). So as part of that test, Keith had some ice, some water, a cracker, and then the guy went and found a few other things. A little lunch-cup of canned pears (in tiny baby bites) was one, and I gave Keith one bite, and a drink of the juice/water, and that was all he wanted. Still... maybe he can build up to actually eating.

A resident named Dr. Nelson came by to talk to us...


The sweet and good thing about Dr. Nelson is that she's the one who had noticed Keith's rough and elevated heart rate last Tuesday, when he was on 7 South briefly.

... Dr Nelson came to talk to us about the ICD, to answer questions. Tomorrow/Friday is too soon for the procedure now. Even if the tubes were removed, it's late on Thursday. They don't work on Saturday or Sunday. Monday isn't a good day. [A hospital as large as a small city might want to do some seven-day-a-week scheduling, it seems to me.) TUESDAY. That's what she wants to aim for. So she will recommend NPO / no food for Monday night, hope they can implant the device Tuesday, and then Keith can be discharged maybe Thursday after? This is tentative.

That's tentative, but it's more definite than most things have been so far.

It will be up to the recommendation of OT and PT (occupational therapy and physical therapy) whether Keith will then go to a skilled nursing facility, or to a physical-therapy rehab facility. I hope physical therapy. Keith was able to pull himself up to sitting, today, and stay there (if he could grab the sides of the bed).

What we learned about the ICD is not good. The papers a doctor had printed out for me earlier from their approved website had some very-dumbed-down information. I looked on the internet. DID I NOT JUST WRITE this morning that I should not do that? He won't be able to drive for six months. That seemed bad. And if the thing does set off its electric charge, he is to go to the emergency room (by ambulance, unless he's awake, and someone can drive him there very quickly), and they will do what they need to do, and then his six months of no driving starts over. Also, even without that, it can cause depression, to have an ICD. But it will save his life, they assure us.

The driving problem, I read about myself, on the same evidence-based site the doctor said was their only and best source, UpToDate.com. The emergency-room-every-time part, Dr. Nelson told me. She also clarified for Keith, who loves to drive, that if he were to opt out of the ICD, he could never drive ever, for risk of cardiac arrest or heart fibrillations. But *with* the device, if he's clear and good for six months, driving would be okay.

All of that made me sad, and tired.

Ashlee had come, and asked the best of the questions, about heart defibrillator implants, and hospital eventualities. Kirby came later, to visit, and I walked out with him, and came on home.

So it was an improving-health day, with frustrations.

10:00 PM Thursday (March 21, 2019)

Tried to speak with the nurse (by phone, from home); didn't connect. Front desk said he was probably in the process of getting meds, that he had slept in the afternoon, that they tried to keep interruptions to a minimum and that they plan to remove the NG tube [nasogastric (nose to stomach)]. Good! That was what the speech therapist said he would recommend. That's what Keith wanted me to remove a week ago. he said I wasn't on his side, and I wasn't a good wife, if I didn't pull that tube out of his nose.

I'll visit in the morning, and start a new post. No more here, probably. Click the "Sandra Dodd" title of the blog to go to the newest things.

Direct-trail links added later for Keith (or anyone).
Click here to go to the days when Keith was told to wait until Tuesday, because the procedure had not been done on Thursday.


Flo said...

I'm sorry you and Keith are having to go through all this. You certainly have my sympathy. You are in good hands, I believe. But, oh, the uncertainty of it all. I hope he recovers well and thoroughly, and you can get him home soon.

Unknown said...

" Keith is alive, complaining about food, and talking about when to pay which bills." This is the best news I've heard since this all started ❤️ Thank you for all your updates.

Robin said...

Sandra, Ross throws up whenever he is given Oxycodone or similar narcotic. He always asks for anti-nausea meds along with the pain meds. Perhaps Keith is sensitive to those things, too.

Thank you for keeping us all up-to-date. xo

Linda Wyatt said...

The survival rate depends on where you are, but for most places it is quite low (around 10% or even less), even for a witnessed arrest (which has the best odds) because so many critical things must happen in the first 5-10 minutes, and that isn't always possible. And even when it is, it isn't always successful.

It is delightful that he is talking about checking accounts and mundane things!! That's fantastic!

I'm glad he continues to improve. I'm sure the hospital staff who were there the first day are thrilled, and just seeing him makes them smile.

Sandra Dodd said...

About the ICD, I read two studies—one from 2010 and one from 2016—of longterm problems, and that wsn't cheery. But there were longterm successes, too.

The wording in the print-out the doctor gave me of patient infomation, and I am not changing a word, was this:

Can there be side effects to having an ICD?

Yes. Your doctor will talk with you about the different side effects that can occur. Side effects can occur when a doctor puts in an ICD. People who have had an ICD for a long time can also have side effects. But most people do not have any side effects from having an ICD.

I know the hospital is dealing with all kinds of people, and some don't read well. UNMH has promised translations into a dozen or more languages. Translators will do better with simple messages, too, but not only is it written at a third grade reading level (maybe fourth), with no contractions, with repetition, and the longest word "different" (three syllables), it doesn't really SAY anything.

Unfortunately, those research reports I found said too much. What I read (just with a date and the first author) was 2010 (Sterlinski) and 2016 (Ranasinghe). I don't think others should read them, and we're not going to back out of it, but that's what I wish I hadn't read. Ignorance leaned more toward bliss.

Laura Derrick said...

I am very happy to hear about the progress Keith is making, and I know the ICD stuff must be so hard to contemplate, even though it will keep him alive. Since you said you're really hoping that he will go to rehab/physical therapy instead of skilled nursing, I wanted to add a little info that I hope will help rather than be more frustrating. Basically, the way they decide these things is based on their evaluation of how much the patient is able to benefit from therapy, and whether or not they are able to do the amount of therapy involved. Rehab is generally 3 hours of various kinds of therapy a day, which is pretty demanding, but really designed to get someone back to functioning independently as much as possible in their particular case. Skilled nursing can still provide therapy, but when they do, it's maybe half of what rehab does, and basically just aimed at maintaining and recovering a bit. The evaluation is based on how much the patient can do for themselves, how much they are able to comprehend and follow instructions, and things like how far they can walk (with or without a walker) without having to stop and rest. I think the cutoff between rehab and skilled nursing for walking, for example, was something like 50 feet without stopping to rest (but it can be very slow). The physical therapists should be able to tell you, so you and Keith can understand what he needs to work toward in order to qualify for rehab. Either way, they are likely to approve a week or several at a time, and then re-evaluate.

Linda Wyatt said...

I know way more than the average person about AICDs, but instead of explaining any of it (unless you ask), I'll just suggest holding onto the fact that it really might extend his life significantly, without all the trauma involved this time.

The wording in typical printed information isn't very helpful. :-(
Most people seem not to want more information.

Jocelyn said...

That talk from a week ago, about you not being a good wife for not pulling the NG tube is definitely hospital related delirium. My mother in law had it every time she was in hospital for more than a day, which was often in her last year. Very unpleasant but she'd snap out of it as soon as we got her home again. It was hard to learn how not to take it personally but it was like clockwork.