Sunday, April 15, 2012

John Goes Home

John's fight is over. He went peacefully at 12:26 Friday afternoon - Holy Friday in the Orthodox Church. He was granted something we pray for in every liturgy: a Christian ending to my life, painless, blameless, and peaceful, and a good defense before the fearful judgment seat of God. He was alert until the very end, unable to do anything but look into my eyes; that was more than enough. Jen and I were there, Father Matthew came in time, Sister Nora (the dear hospital chaplain) was with us, and John's favorite two nurses were there. John shed tears while Father prayed, then I saw in his eyes when he left his body. It was everything I could have asked, just 40 years too soon. But that is in God's wisdom, which is much greater than mine - something we should all be thankful for!

Viewing will be Tuesday from 4 to 8 pm and Wednesday morning from 9 to 10. The funeral  will be Wednesday at 10 am, followed by burial, then a meal. Everything but the burial will be at St. Mary's Orthodox Christian Church in Goshen. Everybody is invited to everything, so please come if you can! 

I am so grateful to all of you for your love, support, prayers, and the thousand things you've done to help us out  this last year. We love you all!

Monday, April 9, 2012

Heartwarming Heartbreak

John is back at Goshen Hospital, and it's good to be back home. RiverCrest sent him back for a massive GI bleed which turned out to be an oozing hemorrhoid - God bless hemorrhoids! RiverCrest is excellent but John is complicated. And non-linear. He's in ICU in the same room he's been in before - I told them that if they ever moved him to another room, I'd come in and kiss the wrong man. There's been talk about engraving his name in the fire extinguisher case right outside his door. 

Nothing is going well  for him now. His last sputum culture showed MRSA and Pseudomonas, and he also has a UTI - his immune system is not working well. For the medical out there, it seems that we're looking at sepsis and ARDS. For the normal folks, the infection is massive and his lungs aren't working well. He's needing more Levophed to keep his blood pressure up, and more oxygen to keep his sats up. He is weaker and less alert that he was a few days ago. Everything is being done that can be done and, without a miracle, he has very little time left. 

We had a special - and emotional - day today. He was very much awake and alert this morning, so I said all the things to him and I needed to say. After enduring that he took a well-deserved nap. This afternoon I brought the dog in to visit with him. He and Jethro hadn't seen each other since John left for work on January 15th. After some preliminary petting, sniffing, and nuzzling, Jethro suddenly sprang up in the air, landed in bed with John, and lay down beside him. John lifted his arms up - no small feat right now - and put them around the dog. They both fell asleep that way, and slept for almost an hour. Before they fell asleep Jethro had the biggest smile I've seen on him since January, and John had one tear running down his right cheek. I sat there with one hand on John's hand and the other on Jethro's shoulder, and enjoyed seeing my two menfolk reunited. John slept more soundly than I've seen him sleep for a long time, and his oxygen saturation was the highest it was all day. They visited with each other for over three hours. I left John still sleeping, and brought home a very relaxed - and rather pensive - dog. For him, the mystery is solved - he knows where his Daddy is, and I'm sure he knows Daddy doesn't have much time left. I'll take him back every couple of days for as long as I can.

On the human front, Jen is flying in on Wednesday evening and I can't wait. It will be good to have the whole family here. I'm thankful for my little family, and for the 34 years I've had with the world's only perfect man. I have no complaints. After all, I've never lived in a refugee camp and it's been years since we've had snipers or IEDs in Topeka. Jen has me pegged. She says that I'm not a glass-half-full person; I'm a the-glass-is-half-full-and-I'm-not-really-thirsty person. I do believe she's on to something. 

Sunday, March 25, 2012

John Gets His Picture on the Post Office Wall

John is having a new experience - that of having his photo on the Post Office wall. Katherine, our post-mistress, swore to me that she would put it on the Most Wanted Wall, not the FBI Most Wanted wall - a very important distinction. But the Post Office is an important center of information in a town that has no newspaper, in a county that doesn't have a daily newspaper. If you live in town you don't get mail delivery, you have a post office box. When you go to pick up your mail - leaving your car running with the keys in it, of course - you stay a while, talk to folks, and catch up on the news. And get to see John's picture on the wall.

And since he is the world's only perfect man, he's gorgeous.

As of March 18th, he was spending an average of 6 hours a day up in the chair and gaining strength. He can't do anything in a linear fashion, so he had to throw a monkey wrench into things. I came in to see him on Tuesday morning (March 20th), and his left leg was the color of an eggplant. He'd developed a blood clot in a vein. So he was put on anticoagulants and bedrest. He relaxed after I told him that his leg was cool but not cold and he had pulses all the way down it, making this a nuisance but not crisis, and got worked up again when I told him that he'd have to stay in bed for a while. He really likes the chair. The leg looks almost normal now and his pulses are even better, so I hope the chair is in his near future.

In the meantime he's been doing his exercises in bed and the vent weaning is moving right along. Yesterday his trach was changed for a smaller size (which will be more comfortable) and with a disposable inner cannula (easier to keep clean - don't worry if this part makes no sense to you; it's really for the medical folks out there). He's been off antibiotics for a week and is doing fine without them - I think the pneumonia finally bit the dust. It is amazing how much better he looks and feels. Today we watched the UK game together and had a wonderful time. This is the first time in the tournament that he's felt like staying awake and focused for the whole game.  

So when you come to Topeka to see all the sights - both of them - be sure to stop by the Post Office and take a look at John's picture on the wall. He's gorgeous!

Friday, March 2, 2012

Lenon, McCartney, and Lent

For those of you that haven't noticed, I've had just a tad of stress lately. This morning I was in the car on the way to drop something off at church on the way to work on the way to see John for dinner when I heard a song on the radio that made me feel much better - an old Beatles song - Let it Be.

The song is based on the words of the Mother of our Lord to the Archangel Gabriel when she was told about the Child that she would bear: Let it be to me as you have said. The song also makes me think of something St. Silouan said: "The soul that is given over to the will of God fears nothing, neither thunder nor thieves nor any such thing. Whatever may come, 'Such is God's pleasure,' she says. If she falls sick she thinks, 'This means that I need sickness, or God would not have sent it.'"

St. Silouan and the Beatles always help me take a deep breath, get a grip, and put things back in perspective. As I've said here before: God is all-good, all-knowing, and all-powerful, so whatever happens to me is for my eternal good. Not necessarily for my comfort or enjoyment, but what is best for me. We are all like children being taken for vaccinations - we think something terrible is happening to us because it hurts, but it is really a brief discomfort that will save us from much worse things later. (No debates about vaccinations. I remember polio epidemics, and was in the line for the first polio vaccines. I'm old.)

Whatever God sends is what I really need. My head always knows that; my tummy knows it most of the time. It's a bit slow about some things.

Great Lent in the Orthodox Church started at sundown last Sunday. It's a fast period, which for Orthodox means basically eating vegan until Pascha (which falls a week after Western Easter this year). Fasting isn't an onerous burden but a privilege, an opportunity to enter more deeply into Lent and into God, a wonderful spiritual medicine for our souls. So I began the fast with the rest of the Orthodox world. And by this morning I was exhausted. I realized that this year, with the aforesaid stress, I just couldn't do it. It makes me very sad to miss this part of the season. But I realize that this year I need to just do the asceticism - spiritual training and labor - that God has laid on me. And that is enough.

I saw Father Matthew at the church and told him all of this, and he gave me his blessing for not fasting. (Actually, he looked at me like I'd sprouted antennae when I told him I was trying to fast under these circumstances.) (One of the wonderful things about being Orthodox is that you don't have to decide these things on your own or re-invent the wheel - you make these decisions under the guidance of your spiritual father.) (I also think parentheses are wonderful.)

Tonight it's dark and rainy, and the wind is howing outside. It shakes the house so that the dog growls at it. I try not to growl at the winds God sends to shake my life; I know I will be better for the shaking. I can hear Bob Seeger singing about seeking shelter against the wind; I know that I have that Shelter and can be at peace. I can let it be. And know that it is what my soul needs, or God would not have sent it.

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 . . .