What I learned

This month long ordeal we lived through last month taught me a lot.  Here are a few of the things I learned.

I love my husband.  So, that’s not so much of a surprise, really.  I have always loved my husband. We are both very much aware of how lucky we are to have each other. We don’t take each other for granted, ever, and we both tell each other every day, verbally and non-verbally, in big ways and little, how much we love each other.  But the reality of mortality hits hard, and it rather got shoved up my nose how much I like, love, respect, and appreciate him, and how  much my world would change and I would miss him if he didn’t make it.

I’m stronger than I thought I was.  It was hard, but I did it.  I managed the house, made sure the kids were fed, the house was safe, the laundry got done, and I was with the Beloved when he most needed me.  I gave him both physical and emotional comfort, and I became a walking Merck manual.  I managed to update most of the friends and family who cared, and a few who didn’t, apparently.  I even managed to shower on occasion.  I made it til he got home.  I wasn’t sure I would be able to.  Yeah, you do what you have to do, until you can’t anymore, and I’m grateful that I never reached the “I can’t” stage, though I came closer than I’d have liked.

I learned my husband is a fundamentally good person,  right down to the basic level.  I pretty much knew that too; I did, after all, marry the man and carry his child.  It was really nice to see how caring he was about the people around him, the nurses and doctors and techs and even housekeeping; he noticed everything everyone did for him and he really was grateful.  And kind.  Even when he was in pain, and exhausted, and had every reason to be cranky and unpleasant, he wasn’t.  This is a lesson I need to learn, as I’m forever apologizing to people for being irritable when I don’t feel well.

I learned I need friends.  I felt very alone.  I’ve never been much good at making friends; I’m shy and awkward and not the greatest at picking up social cues, and ADD makes me very bad at feeding friendships, so people often think I don’t care when I do.  I have really only had two real life in person type friends that stuck with me through thick and thin (excepting the Beloved, of course, he’s special!)  My best, asbestos, amazing friend is Barbara, still back in Massachusetts, who was admitted to ICU there the same day as Peru, and I’ve sort of lost touch with the other,  just exchanging the occasional email.  I don’t have close family either, and no ties to a religious community.  I used to go to spinning guild, but it’s too far away and I always feel like an outsider anyway.  I need to work on becoming less isolated.  There’s nothing wrong with being a homebody, but I think I’ve taken it too far.

I learned that people are surprising.  The people that did show up to help were people I would not necessarily have expected to help, and there were a few I would have hoped would help that didn’t.  I learned that family can be complicated, and that things are not always what they seem.  I learned I’m glad no bridges were burned in the past, and that keeping an open mind can be rewarding.

I learned that virtual friends really can be comforting.  I belong to an email group for fiber people.  It’s called Sheep Thrills.  It’s always been the most rewarding group I’ve ever belonged to; the diversity of culture, experience and personalities in the group is amazing.  Intelligence, humor, support, and a wide variety of discussion always gives me something to think about.  There are members all over the world, and it was very comforting to know that these people gave a thought, a prayer, a candle, or a knitting needle wave, all that energy being directed towards us with a positive emphasis.  There were times when that thought was a comforting hug right when I needed it, and I thank all the Thrillers (and all my other people!) for their energies on our behalf.

I learned I need to downsize my life and KISS (Keep It Simple, Stupid!) a lot more than I do.  I’ll be working on that one for a while.

Tomorrow I’ll go back to blogging about diet and (non-dietary!) fiber; one of the things I want to do this year is catalogue all  my UFO’s (unfinished objects, for the fiber arts deficient) and finish just ONE lace project completely.  I did want to get some of these thoughts down now, in case I need reminding later.  I expect I will.  I’m only human, after all.

A long post, to catch up

So once again, I haven’t posted in over a month.  This time, I do have a better excuse than usual.  December was spent in worry, in stress, in running back and forth between various hospitals and home, trying to keep the family together,  healthy, happy and whole.  Thank goodness Peru is doing better and is home, on the mend, at least until he has to have the kidney stone removed, on the 19th.  Meanwhile, Murphy now has the flu and Eric is sick too.

I have learned a lot through this experience.  I’ve been surprised, both happily and sadly with the things I’ve learned, about myself, my family, my friends, and the medical system.  I’m going to try to save that for a separate post, since this one will be long enough as it is.

I’m going to post here the emails I sent updating family and friends during this whole thing, for posterity’s sake.  I seem to have stopped posting after the surgery, for the most part, and there are parts that I’d like to elaborate on, because the emails were going to a wide variety of people and I kept it simple, so I’m going to try to put editorial comments (in italics) as needed.  Here they are!

A little background: Peru had been having cold symptoms for a week or so, until December 1, Wednesday night, when he spiked a high fever with severe nausea.  The fever broke, and he seemed better on Thursday, just very tired.  On Friday, he looked so bad I finally talked him into calling the doctor, who wasn’t able to see him and recommended we go to the ER, which we did.  There, his O2 sats were in the mid 80’s, but even more worrisome than that, they kept asking us how we “usually” treated his renal failure.  I later discovered his BUN and Creatinine were 55 and 3.4, which is high enough to warrant dialysis.  They admitted him to ICU around 8 pm that night, 12/3, with pneumonia, sepsis, and renal failure.

12/3

My husband is in ICU with severe pneumonia.  They’re considering intubating him, and they think he may have renal failure as well.
I could use any dpn waving you can spare.  Thrillers are powerful, and I need this man.

I was sure he’d recover from the pneumonia, but I was really worried about his kidney function.  His mother had just died this past summer from renal complications from an infection, and it was a little too familiar for comfort.

12/4

Thank you all for your love and support.  Bob is doing better after a truckload of various medications, IV fluids, breathing treatments, etc.  His breathing is easier, his O2 sats are holding mid 90’s, temp, heart and resp rates dropping slightly.  He’s well sedated, which is a blessing (for all!) I brought the kids in to see him for a very brief visit today, which he woke up for and enjoyed.  Poor Eric pretty much had to celebrate his birthday on his own; I left him some unwrapped gifts (BACON, my son asks for his gift from his vegan mother, go figure!) in the fridge for him to cook for himself and Murph while I camped out in the ICU.
He’s still very sick, and I expect him to be in the hospital for a while yet (he doesn’t, of course.) Thank you for your continued prayers, candles and pointy stick waving; it means so much to us.

I felt so badly that Eric not only didn’t get a birthday celebration, he also had to give up his life to stick around the house and take care of Murphy, and clean and whatnot, and put up with a severely stressed mother, which is never fun.

12/6

Bob is doing much better. All of his labs are pretty much normal, and they’ve changed most of his medication to oral rather than IV. They even let him eat lunch today!  He’s still in ICU, and still short of breath and exhausted, but he’s starting to feel better.  He may try to get out of bed to take a short walk today.
We are all very grateful for your prayers and support.  It really helps to know there are people out there who love us. Thank you!

My fiftieth birthday, which I had been dreading all year. It gave me a bit of perspective.  I was happy; Bob seemed to be doing much better, and we were hoping he’d be discharged in a few days, and I didn’t care that I was 50, or didn’t have any presents, or celebrate.  I had dinner with him in the ICU and was just grateful he was on the mend.  We thought..

12/7

Bob took his first walk today.  He was a little unsteady but did okay.  I’m a little worried about a few things, but no one else seems to be, so I’m trying to relax.  (HA!) He’s left with one IV med intermittently and oxygen; no more bells and whistles and wires.  Eating well.  The food is actually pretty decent!  I took him an apricot tart I’d made for his birthday today and he seemed to enjoy it.  He’s exhausted though.  Today was the first day he was awake more than not.

He got lots of phone calls and messages to wish him a happy birthday, which made him feel really good. He got visits too, including one from Melinda, who brought him lovely slippers, in which he got to take that first walk.  He got flowers from Merridee, which are lovely and much appreciated.  I brought the kids in with the apricot tart so they could visit and wish him a happy birthday, and he really enjoyed that.  So it was a pretty busy day, and both he and I are exhausted tonight.
We hope he will be discharged soon, but even after I expect a fairly long recovery period that he’ll be weak and a bit short of breath.  We’ve decided to celebrate all three of our birthdays (Eric, mine, and his) on January 9th, which was his mother’s birthday.  It will be a nice way to remember her and enjoy our birthdays together.
We all appreciate your continued support and prayers.

Ah.  Those “things” I was worried about.  His kidney function was one, but the numbers were coming down, so I tried not to worry.  Still didn’t understand where the issue came from, so it still worried me though.  But the other thing that worried me was the number of PACs I was seeing on the monitor, which actually seemed to be getting WORSE… but the nurses didn’t seem to think it was a big deal.  So I shut up, and just worried inside.

12/8

Just one hour ago, Bob was moved out of ICU to a regular room.  The new room is bigger, with a real bathroom, so that’s nice, but of course, it means much harder access to a nurse.  The ultrasound of his chest showed a pleural effusion (fluid in the space around the lung) but not so much they need to drain it, which is good news.  So it’s antibiotics, breathing treatments and chest physical therapy until he can take in enough air (off of oxygen) to satisfy his doctor.  So he’s pretty motivated, and he’s been puffing on his incentive spirometer all day, despite the cough and pain that comes with that.  He got a shower and several walks today.  He continues to improve and is reasonably comfortable. The food is pretty decent, surprisingly.  He can’t wait to get home though, and we can’t wait for that either.

Much love to you all and thanks for your prayers!

I got to spend the night with him, which was nice, though tiring.  I think I only got about two hours of sleep, literally.  But the room was comfortable, he was able to use a real bathroom, the nurses were nice.  He spent two days on the regular unit.

12/10

I apologize to those who are getting this info again. I apologize doubly so to those who have not yet received it. As you can imagine, I’m a little out of sorts and can’t remember who I’ve sent what to.

Bob had a major setback yesterday, just when we were hoping for discharge.  His breathing became more labored, he was unable to break the half liter mark on the incentive spirometer, and his x-ray showed an increase in the fluid levels. His doctor decided it was time to stop messing around and perform a thoracentesis, which is a removal by needle of fluid outside of the lung, trapped in the space between the lung and the chest wall. The ultrasound done on Wednesday showed that some of his lung had prolapsed into the pleural space, which makes performing this procedure a little tricky, and requires it be done with ultrasound guidance. This sent Bob into a major anxiety attack (once again, a little knowledge is a dangerous thing) and his heart rate skyrocketed, as did his blood pressure. He also spiked a high fever. We got the fever down, treated his anxiety with medication and got our minds around the idea, only to be told that his PT/PTT (a test that checks how quickly the blood will clot) was too far out of whack to do the procedure. He was given Vitamin K to help his clotting, and spent a very restless, painful night, which also caused his blood sugar to elevate high enough to require insulin for the first time ever in his life.

He will have a repeat of the PT/PTT to see if the thoracentesis can be done safely today. I am hoping the doctor will be in shortly to discuss this, and I’ll let you all know as soon as I can.

Please keep our entire family in your thoughts and prayers.

12/12

Sunday morning has arrived, and it brings good things.  Bob had his thoracentesis yesterday.  The actual procedure went well and was far less painful for him than he had imagined (hence the anxiety!) and it has improved his breathing and his pain level significantly.  They drew off more than a liter of fluid from his right lung and he had no bleeding problems.  He slept pretty well last night, and ate most of his breakfast this morning (he has been in too much distress to eat much of anything the last few days.)  He still requires oxygen and becomes short of breath with minimal activity (say, blowing his nose…) but the pain area and intensity has decreased to a tolerable level.  He’s starting to make those “I can go home now, I’m fine” noises again, and we smile and nod patiently, til he has his next coughing fit or has to walk to the bathroom, and suddenly he says “hmmm, maybe not..”  He’s still pretty weak.

We are very grateful for the support, prayers, visits, and love everyone has sent, and for the team of people caring for him (and me!)  We know he’s lucky to be alive and have such good family and friends.

This was a horror show.  Bob knew just enough of the potential complications of thoracentesis, and the fear of pain were enough to freak him out.  We talked to the doctor, who said that he’d make sure that Bob could get some Xanax prior to the procedure.  Unfortunately, the nurse he had that day was a certified moron.  She did no exam or assessment, was there apparently only to push meds, which in our case, she screwed up as well.  Despite our asking for the med several times, she kept putting it off.  When he was supposed to get it, she was “on break” and entrusted it to someone else, supposedly.  Whatever the reason, he ended up having to go to the procedure without it. His blood pressure and heart rate were insanely high due to the anxiety.  Luckily, he did get IV Ativan there at the procedure, but it was a huge stress that should not have happened.  We were lucky to have only one such occurrence while we where there, but that was enough!

12/12

Bob is back in ICU.  He had a good day with several visitors, which he was very happy to see. He did, however, feel increasingly tired, and then began to feel truly bad.  A routine ekg found he had an arhythmia, so they whipped him back to the icu rather quickly.  Some medication converted his rhythm back to normal but he’ll be spending the night here at least.

Again, we thank you for your continued prayers.  I’ll let you know more when I can.

I had a tremendous amount of guilt over this.  He had an episode of Afib, with a heart rate of 180.  I feel like if I had made an issue of the increasing PAC’s I’d seen on the monitor, maybe he wouldn’t have had this episode.  I’m probably wrong.  I mean, it was likely going to happen no matter what I did, but I still can’t help feeling bad about it.  On the other hand, it was really nice to see how quickly, smoothly, efficiently the staff got him diagnosed, moved, and treated, and luckily, he responded really well to the medication.

12/13

Not much to report today.  Bob is still in ICU, his vital signs are stable and he’s reasonably comfortable.  His appetite was improved; always a good sign.  There’s a very good chance he will have a second thoracentesis tomorrow, which having been through it once he is a little less anxious about, and hopefully that will help his breathing.

Thank you all for your continued prayers and good wishes. It means the world to us.

12/14

Instead of a thoracentesis, they decided to insert a chest tube to drain the fluid in his pleural space.  Because of adhesions and other issues, they took him to surgery to do it under heavy sedation but not anesthesia.  The good news of the day is that a CAT scan found a half inch kidney stone in his left kidney, which is likely the cause of the initial nephrosis/renal failure he was having.  He’ll probably have to have a nephrectomy at some point, but since he’s mostly asymptomatic and his labs are fine, it can wait til the lung issues are solved.
Right now he’s post-op with a fair amount of pain, in and out drowsy. Hopefully the chest tube will help drain his chest so he can breathe more comfortably.
Thank you again for your thoughts and prayers.  This has been a long road and the end still isn’t in sight.

Again, it was a fairly horrible experience.  Painful, anxiety ridden, and ultimately fruitless.  I hated not being able to be there in the room; I do so much better when I can see what’s happening rather than sit and worry.  It was mercifully brief, the actual procedure, and he was back in ICU soon.

12/15

I’m sorry, I feel like I’m being Debbie Downer.  With no friends or family in the area, I have no support at all, so I hope you guys don’t mind if I rant a while.

My husband had a pretty comfortable day today; some pain from the chest tube but it’s managed pretty well with percocet.  But I’m so frustrated; every time they do a test, they find something else they weren’t looking for.  Dr. B is starting to seem like Dr. House (though much nicer!) and I’m beginning to wonder if some of these things they’ve found aren’t really worth following up on.  The chest tube isn’t draining much at all, only about 130 cc in 24 hours, and he’s threatening if there isn’t at least 400 by tomorrow, it’s going to be surgery.  Which is fine and all.  But a huge kidney stone high on the kidney will also require surgery, and they discovered entirely by accident a laryngeal polyp that they feel must be treated also.  He’s almost completely asymptomatic from the kidney stone (slightly decreased urine output) and TOTALLY asymptomatic from the polyp.  I’d like to wait til there’s some cause before jumping all over it, considering what we’ve been through.

I’ve been unemployed since Sept, and under employed since the beginning of the year.  My husband JUST Dec 1 became eligible for Medicare, thank GOD! because we have no other insurance.  I have Chronic Fatigue, Hashimoto’s Thyroiditis, and possibly Lupus (was in the process of trying to find a diagnosis when my insurance ran out.)  I have a 23 yo son who is currently caring for the 10 yo son while I spend as much time as I can at the hospital, but the 23 yo has major issues and I can’t really depend on him to be entirely responsible or very much help around the house.  I can’t even vent to my best friend across the country in Boston, as she was admitted to the ICU there on the same day as my husband.  (She’s doing much better and hopefully soon will be home and able to email with me, at least.)

I’m trying to take care of myself but there is no one else to pick up any slack, and I’m exhausted and in fairly massive pain; I’m afraid to take my pain med of choice because I don’t want to be impaired if I have to deal with something, so I’m trying to manage on my last few vicodin when it gets really bad; when that is gone I’m outta luck.

Tonight I’m home for a few hours giving my older son a break so he can go to his Aikido class, and I’m spending the time making chocolate zucchini bread as a thank you to the nurses who have been so wonderful to us, and I’m thinking, what am I doing?

I’m not exactly feeling sorry for myself; there are so many people worse off than me, and I KNOW that to my toes.  I’m just tired, and I’ll probably feel better in the morning. I just needed to vent, let off some steam.

I actually had some pretty nice moments tonight; the kids put the tree together, and the younger one is helping me make the zucchini bread, and we’re laughing because he loathes zucchini and is having so much fun shredding them and talking trash to them.  I love those moments.  But pain really puts a dent in my sense of humor.

Okay; wallow is over for the night.  I now return you to your regularly scheduled, less maudlin programing.

This was my lowest point.  Knowing that they’d have to move him to Ventura felt like the last straw.  I knew it would make my life much more difficult, and it did.  Having to worry about the actual surgery, plus travelling, spending more money, being less available for the kids, and for Peru; I just felt like I was being pulled in a hundred directions at once, and I had nothing left.  I didn’t know how I’d manage.  I am very surprised by and grateful to the people who were there to offer support and actual help; it came from totally unexpected sources and was a life line to me when I felt like I was drowning.  Melinda, Merridee, and the Rhodes family were amazing, I am beyond grateful.

12/16

Thank you all so much for your kind words and support.  I totally lost it today for awhile, but I’m doing better now.

They’ve decided to go ahead with surgery.  The moved him to Ventura, which is what made me lose it; managing Bob and the kids was easier when the hospital was five min from the house.  Traveling half an hour each way certainly complicates things.

The surgeon was nice, explained things well without talking down to us.  He’s having a decortication of his right lung and removal of the stone in the left kidney.  Tonight, within the next few hours.  I’d be grateful for any prayers, waving, or healing energies sent on our behalf.

Ventura Community Hospital was a mixture of good and bad.  The distance was hard, of course.  It’s much larger, more impersonal, and I didn’t have the freedom I had to do things, help out, go places, that I had in Ojai.  The faces were all strangers, and there were far too many of them.  On the other hand, the facilities were amazing (the bed in ICU was like a Transformer’s robot; it changed shape into all kinds of configurations, which was awesome for his comfort!)  Our admitting doctor turned out to be the parent of one of the kids Peru teaches music to at Montessori School, and his son had been talking about wanting “Mr. Bob” back in class, so the doc found us the best people to do the surgery.  It really helped me a lot to understand why they were doing what they were doing, and Dr. Bushnell was excellent.

12/17

It’s 3 am and I just got home, have to be up in 4 hrs, so just going to say he’s out of surgery in the icu doing well. I’ll fill you in on the details tomorrow , that is, later today . thank you for your love and prayers .

12/17

Yesterday they planned to do the surgery.  They felt he’d reached the place where he was strong enough to handle the surgery, and where the disease process had come to the point of the danger of permanent damage to the lung.  The urologist also felt very strongly that the kidney stone had to be dealt with.  There’s some question of which came first, the chicken or the egg; did the kidney issue cause a sub-clinical infection that led to the sepsis and pneumonia, or or pneumonia lead to sepsis with the stone being incidental.  Whichever, they decided that both issues would heal better if the other was also treated.
They planned to use scopes for both procedures, to put a stent in the kidney to bypass the stone and allow the inflammation to subside, then later, go back in and break up the stone for removal.  The pulmonologist planned to use two access points to try to go in, remove the adhesions and fluids and reinflate the lung.  He told us there was a chance (likely) that he would not be able to repair everything entirely with the scope, and might have to join the two access points with an incision, going in to clear it up with more visualization, and that is what happened.  He was able to remove all the friable tissue and reinflate the lung, which should now make healing easier.

The surgery took about seven hours.  I saw him at 12:30 am in the recovery/ccu. The nurses there asked me to help wake him up and cough, deep breathe, to keep his PCO2 and O2 sats where they should be.  He was extremely drowsy, but didn’t seem to be having much pain (drugs are a wonderful thing.)  The sweetest thing in the world was that every time I would wake him up, he’d look around, a bit confused, then see me, and a huge smile would spread across his face, with a look of contentment.  For about the first hour or so, it seemed like for him it was the first time he was seeing me.  After an hour or so, I took to making him sing show tunes to help him stay awake and take deep breaths; the CCU nurses were serenaded with “I’m gonna wash that man right out of my hair,” “Some enchanted evening” and even “the hand jive.”  When I left, around two thirty, he was comfortable, his sats were upper nineties, PCO2 was normal, and they were going to allow him to sleep for a while.  His biggest concern was “I need some food and water!!!!!” I expect today he’ll be a little less happy; he does have an epidural line in for pain control though.
Hopefully now we can see the light at the of the tunnel.  Many thanks to all of you who have been so supportive for me and for your prayers and thoughts.  There may be a Happy Christmas yet!

I still get teary eyed thinking about that night.  When I first entered the ICU, he looked awful; his face, eyes all puffy, tubes and wires everywhere, bad numbers on the monitor.  I can’t describe the moment when he opened his eyes and saw me for the first time, but it’s something I’ll never ever forget. I waited 7 hours in the ICU waiting room; not knowing what was happening (see above, not a good thing for me) and then stood hunched over his bed for two hours trying to keep him off the vent.  It was beyond painful physically for me; when I left I could barely walk. But I was unbelievably happy; he’d made it through surgery, he loved me, I was needed and wanted.  He looked so much better when I left; the swelling in his face was gone, his numbers were better than satisfactory, and I knew he’d be okay, at least for a while.

12/17

For anyone interested in visiting, Bob should be in the Cardiac Care Unit, bed 10, probably through most of today.  Just keep in mind they have very strict visiting policy; 10-6, 8-10pm.  No children ever, and only three people at a time, “immediate family only”

The only part of those rules they stuck to was the no children allowed, so Murphy didn’t get to visit (he did get to visit for five minutes when Bob was on the regular unit being prepped for surgery, but not after.)

12/21

Peru is doing better; they took the chest tubes and drains out yesterday, then moved him out of ICU to the med surg floor.  He looks pretty good, though when I left last night I think the pain was starting to hit.  I’m leaving shortly to go visit; I’m really hoping he didn’t have a horrible night.

Apparently I stopped posting updates after the surgery.  Most of this time was a blur to me anyway; get up, go to hospital, come back, check on kids, try to get a little sleep, rinse, repeat.  His time in ICU was wonderful; he was on an epidural for pain most of the time, and he didn’t feel much discomfort. One big concern was his protein; his albumin level was way below normal, and he was given high protein supplements to help healing. The nurses were great, very responsive when we needed them and unobtrusive when we didn’t. And they did actual assessments!  He lost most of his tubes and wires quickly; the arterial line, then the catheter, then the iv’s, one by one, then the epideral, then the chest tubes and the jp drains, til he was sent to the med surg unit with just one iv and oxygen.  He did recover remarkably fast.  Couldn’t wait to get home.

12/22

Bob is home from the hospital, with many things to look forward to in the next couple of weeks .  I’ll send more details tomorrow but we are just glad to be home and exhausted. thank you all for your love and support and I will email details tomorrow.

12/22

as we can all use some very good news right now, I’m happy to announce that my husband has been discharged from the hospital . he was lucky to escape with 100 percent of his lung function, and so far his renal function is normal. he’ll have to follow up next month with removal of the kidney stone but for right now we’re so happy that he’s home, especially in time for christmas.

I can’t thank you enough for the love and prayers and support you have given to me and my family over the past 3 weeks.  it has really meant the world to us. thank you so much.

Christmas was such a wonderful day.  I was happy just to have him at home, we all were.  The kids were understanding about not having a huge celebration, but they each got the thing they wanted most.  Peru wouldn’t let me make a dinner, so we had Stouffer’s Lasagna, and it was lovely. We had a visiting nurse come twice; once to do the initial assessment, second time for discharge, after he’d had the sutures out at the Doc’s office.  He’s still having pain in his chest from the surgery, his blood pressure is higher than we’d like, and he has to pee every five minutes because the stent is still in, but he’s getting stronger, getting back some muscle tone, and is doing well.  He has day surgery scheduled on the 19th to remove the stent and the kidney stone, and hopefully we’ll be DONE!!!!