Sunday, January 27, 2013

Cooties!

So turns out things weren't exactly back to "normal". Dave definitely caught a cold and yesterday morning started coughing pretty bad. It got worse throughout the day and last night neither of us slept very well because his cough sounds SO awful.  I was on high alert. At one point he knocked something over and I thought it was his water, I went from mostly asleep to on my feet in half a second.  Thankfully it wasn't anything important and I could lay back down.

The big problem with him coughing is that he can't. Yeah... he can't. Think about when you get sick and how much your abs hurt when you have been coughing a ton, he doesn't have the ab muscles to help his body cough things out.  We've figured out a way (yay google) to assist him where I basically give him resistance on his stomach, below the rib cage, so his diaphragm has something to press against when he tries to cough.  It seems to work fairly well but it's a bit of a production and it wears him out. 

Normally a cold like this wouldn't be a big deal but in his case it could go from bad to BAD very quickly. We're mostly concerned about pneumonia. He's taking some meds and sucking on cough drops like candy and I got a vaporizer to help keep things loose. He's been sleeping a lot which is good since he didn't sleep much during the night. It's stressful on both of us.A hospice nurse is making an unscheduled visit tomorrow just to check on him which is good.

Owen is still sick, he missed pretty much all of last week of school. I sent him back on Thursday only to get a call around 1:15 from the school nurse saying he has a fever and please come get him.  He's been laid up all week/weekend and has been putting himself to bed at 8.  That's totally unheard of. I'm hoping he's well enough to go to school in the morning but part of me is so hesitant because his immune system is low and I don't want him catching MORE cooties from the other sickies at school.  If he stays home tomorrow I think I should take him to the Dr although I hate to because they'll probably just say he's got a virus and send him back home. 

It's been a rough week for me because I have been feeling a little under the weather myself although thankfully not as bad as the boys.  Not only am I doing the normal stuff taking care of David but now Owen needs to be taken care of AND I don't have my helper around because he's sick in bed. I don't feel like I can afford to have a cranky day. We're kind of on lockdown around here, no germs in or out if we can help it. 

Oh yeah, and David has treatment on wednesday. We're not sure what's going to happen if he still has this cough. We'll have to evaluate the risks/reward when it gets closer. Hopefully he's on the upswing and this will all be a distant memory soon enough.

Wash your hands and don't touch your faces!


Friday, January 18, 2013

Back to "Normal"

David is feeling a little better.  His throat is still a little sore and his stomach is still a little sensitive but mostly he's on the mend.  His blood got tested again and his level is down to 2.3 so he starts back on Coumadin tomorrow but half as much as he was taking before, trying to keep his level where it is instead of spiking it back up. 

As for the not passing urine problem that was an issue with the catheter that got taken care of.  It basically wasn't completely draining his bladder which led to other issues.  We're thankful for a couple of things... that he's already on anti-biotics which staved off a major infection because of that issue AND he has been saying he trained his whole life for such a thing to happen.  By that he means that he used to drink a few (yes, few) large convenience store sodas every day and sometimes did the same on long car rides so his bladder was nice and stretched out and prepared for being full! HA!

Needless to say he's more comfortable overall.  The tricky thing about paralysis is that he can't really FEEL that there's a problem but his body knows there's an issue and makes him feel out of sorts. He can't pinpoint the cause but he can indicate that there's definitely a problem.

Otherwise things have been pretty quiet around here. Olive hasn't really left David's bed since his treatment on Wednesday, she's so sweet. 

Just wanted to drop a quick "all's quiet on the western front" note since I was a little stressed yesterday when I posted.  So... All's quiet on the western front! 

Thursday, January 17, 2013

Feels Like A Pajama Day

David's having kind of a rough time of things right now.  He's got a bit of a sore throat and a headache. I cannot fathom how his throat hurts, he's taking so many different pain meds it doesn't seem possible but there it is. I'm glad the pain meds don't usually knock him out too much but even if they did it would be ok, it's so awful to see him in pain, I would rather see him sleeping just because I know he isn't hurting in his sleep. 

Yesterday they told us his protime (blood thinness) is at 5.4  YIKES! It's supposed to be between 2 and 2.5.  When he got home from treatment he passed quite a bit of blood in a little bit of urine, not too surprising but quite unsettling.  Actually he's not passing much urine at all compared to how much fluid he's had. No Bueno. His stomach is distended and he's not feeling well although thankfully he can't really FEEL anything but pressure in his stomach.  We're wondering if the steroids are causing edema, that happened last time he was on steroids but his previous dose was larger than the one he's on now.  All of this is "wait and see".  I called to talk to the hospice nurse last night and she's coming to visit today but there really is not a whole lot they can do for him besides try to make him comfortable.

Remembering back to his time in the hospital it seems that there isn't a whole lot they can do for him there either so at least he gets to be uncomfortable at home rather than at a hospital where they do most of, if not all, the same stuff we can do for him at home. 

Actually if we reflect back a year (why on earth do we do this to ourselves?) Today is the day before he lost feeling in his arms.  So basically, a year ago tomorrow is the first day they didn't think he'd make it through the day.  Yesterday a friend asked me how he was doing.  I said he's not feeling great and they said, "Well considering they thought he was going to die a year ago I'd say he's doing pretty well"  HA! TRUE! It's all in the perspective, right?  It was good to get that reminder. 

So today I'm cutting back his steroid to one dose instead of two (I decided, the nurse/doctor can tell me differently later) and his warfarin, and I'm going to stay in my pajamas until I absolutely have to get dressed because it's just one of those days.


Saturday, January 5, 2013

Happy 2013!

Boy are we glad to say goodbye to 2012.  

I know I haven't written in a while and there are a million reasons for that but most of all it's because we've been busy and emotional and the holidays were a lot more stressful than we anticipated.  In fact, Christmas sort of snuck up on us because we were so wrapped up in the emotions of the whole thing so we inadvertently ordered some things that weren't going to arrive until after Christmas.  Instead of worrying about it we decided we would celebrate Christmas in two shifts. On New Years Eve we celebrated Christmas part 2; Or as it's now known, "Second Christmas!"  It actually relieved some of the stress and we figured since everything is different this year anyway we may as well roll with that.

Even though some of our traditions went to the wayside we couldn't let the season pass without taking our annual holiday picture. Usually we go up in the snow but we decided in front of the tree would be sufficient.  I think it worked out just fine! 


Christmas Day we got up early (by teen standards, glad he's not little and up super early!) and did our first Christmas, made breakfast together and spent some time in the living room together which NEVER happens.  Later my Dad and Stepmom came over and brought dinner which was really nice.  It was decided on kind of last minute but we're thankful they came over, it was a difficult day for everyone and we're glad we could be together. David was up in the chair pretty much all day which wore him out but he didn't complain at all because that's where he wanted to be.  When he got back into bed he slept the rest of the night!  

As for how David is doing... they've changed some of his meds around. He's now on a full time antibiotic to keep infection away, he's on steroids as a kind of last ditch attempt at relieving some of the pain in his shoulder and they've increased his morphine dose at night to relieve a little more pain to let him sleep better.  We think all of those things are working to some degree.  He can actually lift his left arm a bit now because the shoulder isn't in as much pain. I counted the other day and it averages out to about 26 pills a day.  TWENTY-SIX!  Yum.

We've also noticed some additional numbness in his right hand and arm all the way up to his shoulder.  Why couldn't it be the other shoulder that went numb, the one that hurts from what we suspect is a rotator cuff problem. The right side is the bad side so it's not too big of a deal except that it's more pins and needles kind of feeling and it irritates him rather than hurting.  He mentions it in passing maybe once a day and I notice him touching it a lot with his other hand, putting pressure on the sensitive areas.  To most people that's nothing but coming from David that's a full on complaint!

We spent Christmas money from his parents on a new Blu-ray player and universal remote for the bedroom so he can watch movies a little easier than the old set-up where we had a computer hooked to the tv and the remote was cumbersome.  The blu-ray does netflix and amazon prime and oodles of other online streaming resources and he found a remote app he can use on his phone!  The man is set up with gadgets, just the way he likes it. Thanks Mom and Dad!

We expect to see David's parents here sometime this week for a visit, they're in Utah right now for the wedding of one of their Chinese grand daughters. Short story, they taught western culture/english at  universities in china for a couple of years and some of their students moved here to go to school. These students are lovingly referred to as their Chinese grand children. David is still getting treatment although luckily this will be a week off so nicely timed! 

Thanks for hanging in there for a whole year with us.  Yesterday was the anniversary (that word doesn't seem right) of David's diagnosis.  We've been wanting to post a "year in review" type of post with some thoughts from David (his family will laugh and expect about 2 sentences out of him) but as you can imagine we've been on a jumbled roller coaster of emotions lately and are having problems forming coherent thoughts. There's a lot of remembering what it was like a year ago, and that was no somewhere either of us really wants to go but it's kind of unavoidable.  At least right now things are mostly status quo with minor setbacks and we're used to this new normal.  It doesn't make it easy but it does make it predictable which can be somewhat comforting. 

Happy New Year!

Monday, December 3, 2012

Traditional Sniffles

So Owen has a cold.  Not sure where he picked up that little piece of lovely, school probably with all the rest of the germy kids but that's not really something we need around here. He's taken to knuckle bumping instead of hugs and kisses before bed. I hope he gets better soon.  Today he took a can of soup and a bowl to heat it up in for lunch (they have microwaves) I thought it was cute.  He's not sick enough to stay home, just sick enough to be whiny.  I hope Dave doesn't get it. We don't normally get sick a lot around here but when we do it's usually this time of year. Yay.

Dave has been ridiculously tired lately.  He spent a good part of last week napping.  We think it might be the allergy medicine.  He took Allegra for a while and I've always taken Zyrtec because those work better for each of us.  Allergy season was over so he stopped taking it and then started getting migraines.  We don't know for sure that's what caused the migraines because he isn't having allergy symptoms per se and correlation doesn't equal causation and all that but we figured he should start taking it again so we can rule it out.  So... I gave him Zyrtec because I was out of Allegra.  It could be why he's been so tired. Today I'm switching it back for the A and we'll see if that fixes the napping problem.  He kept apologizing but I think it's probably ok if he sleeps.

His last big migraine was the week before Thanksgiving.  He was taking a new antibiotic (Septra) and it was making his stomach hurt with severe nausea (if he can feel it it's severe) which turned into a migraine and throwing up etc etc. I was at a PTO meeting and I got a text message then an immediate panicky phone call from Owen so I came home.  Ugh.    The hospice/dr's office have Septra listed as an "allergy" now even though I don't think it's a true allergy they don't want to risk him getting it again since he doesn't tolerate it.  That was even with the anti-nausea meds! You better believe we'll remember the name of that antibiotic!

This week Owen has a community service project at school for national jr honor society so he'll spend some part of wednesday night doing that.  I'm feeding teachers on wednesday but Dave has Chemo so I'll have to get the food tuesday and leave it in the fridge at school and someone else will have to handle it. (yay for having more than just a couple people active on the PTO this year!) Thursday I have parent/teacher conferences and Owen has a half day then friday he gets the day off.  Lucky dog. I feel like I'm missing a couple of things but I'm sure I'll figure them out really quickly. I write things on my calendar but I'm getting a little more forgetful.

My weight loss has kind of stalled out at 28 lbs lost (in 12 weeks, not bad) but I think this means I need to actually go back to the gym. I went for a while then got too busy (or lazy, whatever)It's a little frustrating that it was just falling off to begin with and now I'm actually having to work at it.  I know for sure I'd feel better and have more energy if I went but actually getting there is a whole other thing entirely. I'm putting the pro in procrastinate. ;) 

Owen and I did get a tree this weekend. I need to put the lights on it today (usually Dave's job) and we'll decorate it tonight. There are things that I didn't think would be such a big deal like getting the tree without D but they ended up being a little more difficult than I expected.  I imagine a lot of things will be like that but I'm trying to take comfort in knowing that we're not doing them WITHOUT him, he's just not physically present for some of it but he's still here to talk to and work through things with.  At some point that may not be the case and I'm hoping that because we've had transition time it will make things a little bit easier.  I let Dave pick the colors for the decorations since we kind of switch it up every year. I'll post pictures when we finish.  There will definitely have to be some White Christmas watching at some point.

We don't have a lot of traditions but that is one of them.

Oh yeah, and I don't know if we'd call it a tradition but we do have a bit of one. No angels on the top of the tree.  Growing up we always had an angel and the first few years David and I were together we had an angel on the tree... until the one year when we had a bunch of baby spiders... and one crawled across the angel's face.  HA! EW! NO! Stars... yeah...  stars are nice on the top of the tree.  I think we'll stick with stars.  LOL

Thursday, November 22, 2012

Thankfulness

Amid all the upheaval this year has brought to our lives we're often reminded of all the things we have to be thankful for.  The very tangible things are kind of given. A house over our heads and food on the table, reliable vehicle, health insurance, hospice, etc etc etc. It's not that we're not beyond grateful for those things and we'd be lost without them but there are things we have overlooked in the past that seem so much more important to us. It's less tangible things we have tried to be more mindful of.

We don't know where we'd be this year without the moral support and love from friends and family. For everyone who cares enough to read this and even those who don't, for all the emails, cards, hugs, visits, phone calls, encouragement, shoulders to cry on, hands to hold, laughter and just love in general. I won't sugar coat it, this year has been the worst of our lives in many many ways, so full of loss and stress and impending doom. Heh, that was dramatic, I know.  But it's also been full of countless blessings and an out-pouring of love. We've learned to recognize and be thankful for friendships and communities we didn't realize were so important to us. Hopefully we express our gratitude adequately in the moment but sometimes we get overwhelmed and don't do that as well as we could. It's hard to sit back and accept help but we're always reminded to be humble and we've tried to be gracious about it. Please never doubt how grateful we are.


It's been about a year since David was first having symptoms and there were two days early in the year when they didn't think he would live 24 hours, they certainly didn't think he would make it a year. Now look at us. We've found a new normal, he's doing relatively well and things are a little bit status quo. There is no real sense of urgency about anything which is kind of a relief in some ways although it's the quiet, non-urgent moments that get us out of business mode and give us time to think. Not always good for morale which is a little silly and backwards.

Personally, I'm thankful that we've been touched by the lives of the people we've lost this year. Facing the first holiday season without them is daunting but knowing that our lives are better because they were in them brings a sense of comfort at a time when we could be (and sometimes are) wrapped up in the loss. I'm thankful for David's strength and love and understanding. I can't imagine what he must be going through and he constantly gives everything he can give which he says isn't much but it's more than he knows. For Owen and his ability to roll with the punches, his humor and teenagery nonsense that reminds me that life continues as normal and things do exist outside our bubble. For family who includes us in every way they can even when we can't go anywhere. For my communities, ryinburgh, virakar, Owen's school(teachers, parents, admins, pto), pacificsource and church... you all overwhelm me with your understanding and support. And for friends who, more than I'd like to admit, help keep me sane. As sane as I ever am. (David is also thankful for that because he knows that when he's not here to be a support that I still have a good support system.)  I don't know what I would do without you and I'm glad I don't have to find out.  Thanks!


Thursday, November 1, 2012

Halloween: The Cute Story



This year the kids were allowed to dress up in costumes for school. In years past they weren't allowed.  Owen decided to be a shadow and wore all black. We told him he couldn't wear that out trick or treating because it was too dangerous. (all black at night? recipe for disaster!) He said he could wear it with reflective strips and be the teenaged child of helicopter parents... har har. Clever little brat. lol  I told him he could do that if he wanted but just to think about it and let me know after school.  While he was gone I thought maybe he could be Dr Who.  He's a BIG FAN and Dave has a jacket that fits Owen that works perfectly. When he got home and agreed to that choice I made a bow tie and a fez for him really quickly (good thing I'm crafty) and he was ready to go. He was going trick or treating with Josie (who introduced him to Dr Who) and it turns out that she had kind of a rough day as one of her wigs got played with too much at school and fell apart. Serious tragedy in the cosplay (costume play) world she lives in. So Owen got to her house and she took one look at him and freaked out and changed her costume to the female character from Dr Who, Amy Pond. She just happened to have a wig appropriate for that, too! It made her night which in turn made Owen's night. It's always nice to be able to cheer up a friend! Then there they were in themed costumes ready for the candy collecting! They met up with some other friends and had a good night.  I love this picture to pieces.  Their costumes, their body language, all 8 years of their friendship shows through.Owen is lucky to have a friend like her who gets his quirks and plays along and I'm happy that her mom, Laura, and I have become such good friends over the years. We're so thankful to those special ladies and don't know what we'd do without them! <3



David and I stayed home and happily ate halloween candy instead of passing it out to kids because none came to the door. MORE FOR US!  Actually, I'm going to have Owen drop off the rest in the teacher's lounge at school. Less for us! HA! It's been a mostly quiet and uneventful week otherwise and for that we are grateful!

Hope everyone had a safe and happy halloween!