Tuesday, February 28, 2012

I Get John off Drugs

It amazes me how much trouble John can get into when my back is turned. It has to be turned a lot now, since he's an hour away and I'm working. (And the puppy bladder has its limits. And I really need to give up sleep for Lent.) Anyway, there've been some stretches of time that he wasn't answering my text messages and I wondered what was up. 

I found out this morning. When I got there he was stoned. I hunted up his nurse and found out that he's been asking for Ativan for shoulder discomfort - the kind you get when you stay in bed all the time. Ativan isn't for pain; it sedates you and makes you stay in bed all the time. He's been compounding his problem as well as sleeping all day.

So I had the appropriate discussions with the appropriate people - including John, who will probably never think of asking for Ativan for the rest of his life. Ativan and Morphine orders have been cancelled. He now has an order for Tylenol. (John is sensitive to drugs that sedate people, but even he can't get sedated on Tylenol.) He slept all of today including his therapy times. Physical Therapy will re-evaluate him tomorrow, since he was stoned when they tried to today. Speech therapy will re-teach him all they taught him today. Occupational therapy gave up and left him alone. I convinced the nurses and nurse practitioners that he is normally a highly-functioning, independent grown-up - which didn't seem likely today. John says he's sorry.

There are two morals to this story: First, leaving husbands unattended in hospitals is iffy. Second, a moderate amount of medical knowledge isn't as much as it seems to be. All he knew was that he got Ativan at Goshen Hospital (he was - when he was first entubated and needed sedation) and it made him feel better (no comment). He had no idea he was nearly unresponsive for hours after getting it. The man needs a wife.

Meanwhile, the ventilator weaning is going very well. (Don't worry if I lose you here.) He's now on SIMV; FiO2 is down from .40 to .30, rate is down from 12 to 4, the next thing to start weaning is pressure support. For the non-medical: he's doing more on his own and needing the ventilator much less. He failed every attempt to wean a few days ago at Goshen; he got too frightened about having the setting changed. Which means that his being stoned on Ativan for a few days may be a good thing, because he slept through it. I told him today - after he'd started waking up a bit - what his vent settings were, and just thought that was cool.

Let me sum up: There will be no more sedation. Therapy should actually work when he's awake. He'll eat better when he's awake. The vent weaning has gone very well while he wasn't awake. And he says to tell everybody he's sorry.

Saturday, February 25, 2012

John Goes to Boot Camp

Still all good news. At 4 pm today John left Goshen Hospital for RiverCrest in Mishawaka (on Jefferson near Byrkitt, for you locals). All he's left on is the ventilator - no IVs, no feeding tubes, no pic lines. He still has his chemo port for IV access and blood-drawing. And he still has the foley - I have no clue why and predict it will go away soon. He did fine on the trip and for the settling-in part of arrival. I wasn't able to go along with him - it would have pushed the puppy bladder to 14 hours, way beyond reasonable limits for his age. So I'll go see John tomorrow - it's an hour drive one way - and do some other errands on the way: Post Office, bank, and Best Buy to get him a Kindle of some kind to use for communication (before he's off the ventilator and can talk) and for internet access, and groceries on the way home. We'd love to get 2 iPads, but there's no way we can afford that. We would consider a pair of carrier pigeons if they weren't extinct.
They gave John a big send-off at Goshen; we promised to come back and visit when he's walking and talking. John's survival is the most excitement they've had up there since the decision came down to change the staff uniforms. It does wonders for unit morale when someone who was given no chance manages to survive anyway. They just didn't know John like we do - now they know him, too, and are very fond of him. 
He's at RiverCrest Hospital, 1625 East Jefferson Boulevard, Mishawaka, IN 46545. Main phone is 574-255-1400. Visiting hours are 8-8, and immediate family and clergy are welcome any time. Of course he can't talk on the phone yet, but he can read email and can text. And cards are very welcome!
I have no idea how long he will be there. Weaning someone off a ventilator has no set time; people are so different. We have one doctor saying it will never happen (Dr. Grinch, of course), and another saying John will be quick and easy to wean. I expect him to be nearer the second. We'll all find out together.
Thanks for keeping up with us - all your comments let us know that we're not doing this alone. Believe me, we will spread the word if we need anything. Right now, we need to know that the outside world is still out there, and that some of it loves us. Thank you all for that!

Thursday, February 23, 2012

John Gets Vertical

There's nothing but good news today. John got up in the chair yesterday for 1 1/2 hours, today for 3 hours. Yesterday it took 2 people to help him get there; today he did it by himself with an aide to handle all the tubes and wires. Now that he has the trach, he's progressing rapidly in the eating department - liquids yesterday, soft today (which included scrambled eggs for breakfast - he was one very happy man). He's off all the IVs except for some remaining antibiotics. The trach is healing well - not yet to the point of rigging him up to talk - but he's back to texting, so we can communicate when I'm not there.

The plan is to transfer him to RiverCrest in Mishawaka - it's an L-TACH (long-term acute care hospital) - for weaning off the ventilator and boot camp rehab. He's looking forward to it & ready to get to work. It's possible that he'll go tomorrow, but Monday is more likely. He feels good enough to be impatient to be up and around.


Most of the medical crew is floored by his recovery. Those of us that have known him for a while - his cardiologist, pulmonologist, and me - aren't floored but are relieved. I'm finally relaxing some. The dog is less depressed by Daddy's absence - two days ago I packed up John's house slippers and razor to take to him; Jethro watched, his eyes lit up and his ears stood up, and I could see his furry mind figuring out that Daddy must be okay and out there somewhere.


John has a lot of work to do; he's done rehab before, and is looking forward to it. I have a lot of work to do; I haven't managed the finances or done taxes in a while, and I'm not actually dreading it. And someday I'll vacuum and clean the bathrooms . . .

Tuesday, February 21, 2012

John Gets His Throat Cut Then Kisses Me

Hi out there!
Today was a very good day. First, PT came and helped John to stand up by the bed for about 5 minutes, and to walk 4 steps - sounds simple, but isn't! He went to the OR this afternoon for a tracheostomy - so the tube connected to the ventilator goes through a small hole in his throat instead of through his mouth. It's much more comfortable for him. And after it heals, he'll be able to eat and talk. It also will make it much easier for him to get off the ventilator and breathing on his own; it takes a lot less work to breathe through a short, medium-diameter tube than through a long, narrow tube. He was very excited about getting it done. On (probably) Friday or Monday he'll be transferred to a rehab facility in Mishawaka (the closest one that takes folks on ventilators) for boot camp rehab, to get him up, moving, stronger, and breathing on his own. He's also very excited about that.
The trach went very smoothly and quickly. After he woke up from the anesthesia he was grinning from ear to ear, delighted to have the tube out of his mouth. And we haven't been able to kiss each other for over a week; we probably looked like a couple of teenagers making out (very gray-haired teenagers). It's amazing how much you miss that after almost 34 years of marriage. I told him he's much more fun to kiss than the dog.
So now he's spending a few more days in the hospital to give the trach time to heal well, and me time to tour both of the facilities he can go to. Both are in-network for our insurance, thank goodness, and both have available rooms. So I'm looking for the one that's going to be more aggressive in rehabilitation. I won't be able to see him every day after he is transferred - he'll be about an hour away - but it will be so good for him. And he's chomping at the bit to get up and working.
Thanks for listening, thanks for caring, thanks for being there! And sleep well.

Sunday, February 19, 2012

John Becomes One Step Above an Innert Mass

John looked better today, and said (wrote a note to me - he can't talk while he's entubated) that he felt like he was getting better. They haven't gotten as much junk out of his lungs today; it seems that yesterday cleared most of it out. He was awake when I walked in the room, which he hasn't been all week, and was much perkier. He stayed awake all the time I was there, writing notes to me and holding hands. (I know - Mama told me we were too old to hold hands in public when I turned 25. I paid no attention. What can I say? I adore the man.) I put his glasses on him for the first time since last Sunday - thought it was time he had to really look at me - he didn't mind too much.
So now we're all waiting to see how he does. It's still a matter of beating a very severe case of pneumonia: getting & keeping his lungs clear, and building up enough strength to be able to breathe on his own, then get up and start moving. The PT people should see him again tomorrow. I'm feeling more hopeful tonight that he'll survive this. He still has a long road ahead, but he's determined to do it and is working hard. His greatest asset at this point is stubbornness. He has a aunt who says that he can become one step above an inert mass - that's just what he needs right now.
I'm trying to head off to bed early tonight. The fatigue of 5 weeks finally hit me today, and I kept falling asleep standing up in church. (Orthodox Christians always stand up in church.) And I'm feeling the fibro today. So my most immediate job is to take care of myself. Jethro doesn't need two sick humans to deal with, poor creature.
On reading back over this, it seems a bit scattered and disorganized - so am I at this point. So goodnight all - sleep well!

Friday, February 17, 2012

Dr. Patel Rides to the Rescue

I said I'd do better keeping you up-to-date on things - and things are happening. So here I am again.
This morning John's oxygen level was still good (sat of 1.00 on .40 O2, for the medical out there), but he was getting worn out with the effort of breathing, and had junk in his lungs that he couldn't cough up. Dr. Grinch (the intensivist) called Dr. Patel (a pulmonologist) in for a 2nd opinion, which was great. We've known Dr. Patel for a few years, he's taken care of John before and knows us, and I have a great deal of faith in his judgment. He saw John and talked to me, and strongly recommended immediate entubation and aggressive treatment of pneumonia, and disregarding of the red herrings (like cancer and congestive heart failure, which are both well-controlled right now). So between the two of us we convinced Dr. Grinch to do what Dr. Dunnick (cardiology) and I have been wanting since Monday, and what John was asking for. (That's what happens when you're married to a critical care nurse for a few decades - you request entubation. Be warned out there!)
They put the ET tube in John and put him on a ventilator, where he can rest, be suctioned to get secretions out of his lungs, and can have some secretions sent to the lab for culture and sensitivity, which will tell us if the antibiotics he's on are right. When they put the tube down they immediately suctioned up a great glob of thick brown secretions that he hadn't been able to cough up (apologies to the squeemish out there, but it's me), and he immediately relaxed. I talked to his nurse a bit ago; she said he's been much more comfortable and is resting much better. He should get a good night's sleep tonight.
And so should I. Today has been quite an emotional roller coaster. Before I talked to Dr. Patel, I was very afraid I'd be a widow by sundown. But Dr. Patel is more optimistic about his prospects. And after all, it's his specialty we're dealing with here. So I'm more relaxed, John is more comfortable, and the dog is still anxious and depressed about where Daddy is. And of course I can't explain things to Jethro; he just knows that Daddy's gone. On the practical level, I did finally get to the grocery store today. Otherwise I'd have been reduced to eating Jethro's food. Which would not help his anxiety. And probably not my digestive system. :)
So to sum up: the cavalry arrived in the form of Dr. Patel, and everybody is better except Jethro.
Thanks to all of you for your love and prayers! Now I'm off to bed. Goodnight, all.

Thursday, February 16, 2012

The Joys of Parentheses. Or - I Cause a Ruckus

Well, we got back from Indy after 4 weeks of John being in IU Methodist hospital - got home last Friday (Feb. 11th). John didn’t get the mitral valve replacement we'd hoped for, because the radiation from 1974 that damaged the valve had caused so much calcium to collect at the base of the valve that there wasn't enough good tissue to sew a new valve to. But after a permanent pacemaker (to stand in for the conduction tissue the radiation damaged), an EP study and 4 ablations (to stop irregular rhythm caused by damaged tissue), and a stent (to deal with a blockage caused by - you guess it - radiation), he was on new drugs and in much better cardiac shape that he was before (when he passed out at work and started all this ruckus).
Thanks be to God for parentheses; I couldn't talk without them.

The last few days before he came home, he came down with bronchitis. He got 24 hours of IV antibiotics and came home on oral ones. But by Sunday he was very short of breath, went in to the Goshen Hospital ER, and was admitted with severe pneumonia. Then more ruckus started, set in motion by me. Hard to imagine that.

He's been in ICU since, and is quite sick. The doctors disagree about what to do with him. The intensivist wanted my permission to let him go, since he had obviously been disabled for a long time. The oncologist wanted me to let him go because the problem was a rapid worsening of lung cancer (also caused by radiation). The cardiologist wanted him to be treated aggressively because he had pneumonia. Having power of attorney, I told all of them that:

  1. Ten days ago he was walking in Indy without assistance and not needing oxygen. Then he started coughing up brown stuff. He does have pneumonia.
  2. After the cardiac work in Indy, he was doing fine with the new meds.
  3. When all of this started he was at work, not severely disabled at home.
  4. This current crisis came on quickly when he started coughing up stuff; cancer doesn't spread that fast, but pneumonia does.
  5. John & I have talked extensively about what he wants done in what circumstances. He wants everything done if he has a problem that can be gotten over.
  6. This isn't the 19th century. Pneumonia is still fatal at times, but it can be gotten over.
  7. Here's what we're going to do: aggressive antibiotics, aggressive nutrition through an NG tube, Bipap to support his respiratory system, and some sleep.
So that's what they did. And he's making small steps in the right direction. And now they all agree that it really was pneumonia after all. (I used to work with cardiothoracic surgeons; I can tell off any physician that I need to.) His blood gasses on Monday were catastrophic, Tuesday's were merely horrific, and Wednesday's and today's were normal. This chest X-ray is improving. He's getting stronger and feeling better.

There's a long way to go. "Stronger" means able to sit on the side of the bed for 2-3 minutes at a time. But he's alert, laughing at jokes, and rolling his eyes at the right political news (No, I won't elaborate. So don't ask.). He is sleeping a great deal, which he needs after 4 weeks of trying to sleep in a hospital. I'm glad to be back at home, with my own bed and fridge and dog.

After 4 weeks without any income and with the expenses of being in Indy, I'm back at work. It is also great therapy for me - a little bit of normal life. I'm not spending a lot of time in the hospital room because John tries to stay awake if I'm there, and he needs to sleep right now. In the morning I run errands, go see him, go to work, see him after work, run more errands, and try to get home within the limits of the puppy bladder (successfully, so far), then look after the house. I've had a few times of emotional decompensation, but am generally doing well. Father Matthew is taking good care of both of us, and I have a wonderful support system here.

Two out of 3 docs - including the first one that wanted me to let him go - now think he may live through this. I think he has a decent chance. But nobody knows, of course. Your prayers are welcome, as always. I'll try to do better keeping you all updated. So much has happened so fast, that by the time I was ready to tell you about one thing, there were 2 or 3 others that needed to be covered. So I got myself hopelessly behind. And in Indy I was spending about 10 hours a day at the hospital - if I wasn't there, I was generally asleep.

As always, any of you that are on Facebook are welcome to look me up. Though I haven't been very good at communicating, you're all in my mind and heart. Love you all!


Monday, February 6, 2012

I Finally Figure Out How to Get Around the System

Hi, Everybody!

I still can't access my contact list on the home computer, but finally figured out that I can cut-&-paste your addresses from replies in my Inbox - duh. You can all get updates from Indy now. There is no escaping the Hockman news.

John is much better. He got moved out of CCU and up to the stepdown unit on Friday evening. Yesterday he got up and walked a lap around the (large) unit, looking like he's been walking for years. He's off the IV meds, off oxygen most of the time, still on the monitor. Of course he's tired and out of condition, after being in bed for 3 weeks. Now we're down to getting his meds tweaked for him to go home on - keeping his clotting time, potassium, and magnesium where we want them without having to do IV stuff every day chasing them. How long that will take you never know, but I expect him to get out in a few days. We'll stay here in Indy for 3-4 days after they let him go. If he decides to get exciting again we'll be right here, and he'll have time to gain some strength before making the trip home.

And yes, we did see the Super Bowl. Like most folks here, we will be glad to see everything get back to normal - streets re-opened, traffic down, gas prices back down (they went up 40 cents a gallon for the weekend), and hotel rooms available for less than 6 months of mortgage payment. I can move back into the hotel at 3:00 this afternoon. I've had a great time staying with my friend and playing with her cats. And Indy is happy that the Giants won. Indy loves Eli because of his brother - I'm old enough to love both of them because of Archie. They're both such nice boys. And it was a good game!

I'll keep you all posted, now that I've figured out how to get around the system. :)
Joan.