Arrangements

A year older...

Well, Dad is officially a year older, and he certainly had to work for this one! Last night Mom, Grant and myself ate carrot cake (Dad's favorite) and drank Stone IPAs (more favorite than carrot cake) in honor of Dad's 57th birthday. Honestly, we didn't know if he'd make it to this one, but in true Comstock fashion, he simply hasn't given up.

And so it is with this final blog and a very heavy (heart broken, really) heart, that I want to let those of you know who perhaps haven't heard, that Dad is now on hospice care here at the house. Again, his pneumonia was causing high fevers and trouble breathing, but by suctioning through his stoma and managing his fever, we were able to get him comfortable and alert enough to ask if he wanted to go back to the hospital. Using a fairly reliable nonverbal form of communication we developed in therapy (close your eye for yes), his reply was a clear "no."

So this would bring me to the reason Grant has suddenly appeared! No, he's not done serving in Lesotho, but we felt it would be a good time for him to come home, spend some time with Dad and say goodbye. Ben is also coming home for the weekend, so we can at least all five be together one more time! Grant's travel plans depends heavily on the next couple weeks; it is certainly nice to have him home for a little bit.

For those of you who have been so supportive and worried about us, I just want to say this: From the bottom of my heart, thank you. Your support over this past year has been what has truly gotten us through it. As a family we are all processing the impending events of (what I imagine will be) the next month in our own ways; it's certainly not easy. Speaking for myself, I have found peace with our decision and now, although he has put up a truly remarkable fight, it is time for Dad to find some peace of his own.

I won't be blogging anymore, but please feel free to stay in contact with me through email or phone, either way, I'm usually free. If you would like to come by the house to say hi to dad or Grant while he's in town, feel free to contact my mom or myself. I'll leave our contact info below.

Allie: allisoncomstock@gmail.com

805.558.7515

Anne: acomstock@roadrunner.com

805.558.3732

Update

Unfortunately I'm not in the mood to be too cute and clever with this update, but I definitely wanted to let everyone know what's going on with Dad lately (sorry I totally missed March althogether).

Well, the beginning of last week found us once again back at the hospital. I'm starting to know the nurses and respiratory therapists on a first name basis ("Cindy could you call Sue? He needs suctioned"). Or then there's the occasional person who recognizes me and inevitably waves and asks "Hey, how ya doin'?" to which I fight the urge to reply, "Well, seeing as I'm in the ER again, pretty crappy, thanks!"...smiling all the while. At any rate, he'd been running a low grade fever for a while, his sputum had turned at least ten shades of green/yellow, he wasn't tolerating his feedings (he's down to 115 lbs. if you can wrap your head around that)...and we just knew it was time to head back in.

So that's where we are. His cultures have come back (takes a while to determine what's growing in what), and it looks like we have the same culprits as back in January except this time packing a bit more antibiotic resistance. The infectious disease doctor wants to treat him until Friday and then send him home. I guess the bottom line is that these are the kind of infections you don't really ever get rid of, you just suppress or try to control them for as long as possible. We also have a physical therapist coming in to move him around and try to keep from reversing the progress he's made in the past couple months...but to be honest, that's going to be a challenge after being in bed for 2 weeks straight. I guess we'll see!

If anyone would like to come to visit him, you are more than welcome! He's wide awake most of the time and probably totally sick of me and my mom at this point. We're in the new wing of the hospital in a super swanky suite in the Cardiac Telemetry Unit where there's a flat screen TV and the nurses are rockstars. Just sayin', in case you need a little incentive :)

Hopefully all is well with you, I'll be sure to update sooner than later next time.

Brace yourself, it's a long one!

Hi all!

Yeah so it's been a while...my bad! But hear me out; when your whole life revolves around taking care of someone, there comes a point when you are tired of thinking about it...and talking about it...and writing about it. Luckily I have some positive news for this update! Let's dive right in, shall we? I'll start with a brief summary of the past two months:

The year actually started out on a pretty positive note! That might sound surprising considering my last update, but Mom and I decided to take on a more "no nonsense, take no prisoners" approach to Dad's care in this new year. The bottom line? He needs intensive physical therapy. And a lot of it. And when insurance stops paying for it (because they will...oh yes, they will...), well, we're just going to pay for it out of pocket.

So we started out with a fabulous new therapist who specializes in therapy for brain injury victims, and right after the the first visit...bam! We were back in the hospital. And in true Tom Comstock fashion, Dad not only had pneumonia, he had three kinds of pneumonia! Such an overachiever, this one! But this is apparently something that's going to happen on a pretty regular basis. Because of his condition, Dad is simply more vulnerable to certain infections than healthy people who can stand up, cough, swallow...you get the point. Upon discharging Dad, the infectious disease doctor said Dad would be in and out of the hospital from here on out (specifically he said it'd be a "revolving door" for us). So that sounds like fun, huh?

But I said I have positive news and I wasn't just trying to sucker you into reading on! Dad has been out of the hospital for a couple weeks and almost immediately after his discharge we started with back with the new therapist. Our goal is to control his "tone" (what makes him spasm and tense up) without dulling his cognitive abilities. Julia (PT) is pretty sure we can improve all of this through positioning, stretching, movement...I mean, I'm a fan of the valium, myself, but hey, who isn't?? All kidding aside, she has already shown us in a just a few visits that she knows what she's doing. She is positive and hopeful and has plenty of plans for Dad's recovery. We also just purchased a new therapy mat platform for the house so that we can continue Dad's therapy here on a daily basis. Even with 3 visits to Julia per week, we'll need to supplement his therapy with work at home. AND I think it'll make a great decorative statement in the dining room...

To give you an idea, picture a 6'x8' version of this in purple :)

So that pretty much brings us up to date! We're also planning on purchasing a standing frame (explanation and description to follow once we've got it) for the house as well. That's a bit trickier than the mat platform though, so it'll be a little while before we order it.

Mom and I are doing alright...over Thanksgiving I purchased some unconditional love under the guise of getting a therapy dog for Dad. Which is where Maxwell comes in...so I'll share with you a picture of the first day he came home!

He's about 3x that size now, but you get the picture! He's brought a LOT of happiness and light into our house through a rough couple of months! He's quite a snuggler too, but we have to keep a good eye on him with Dad...I have this fear he'll chew through Dad's gtube. Eeeeeww. Don't worry, we won't let that happen.

With that I'll save something for next time. Feel free to call either my mom or myself or email either one of us if you want to hear more about what's going on with Dad. Hope this finds you all well!

Last but not least?

Sorry. Yes, I took a little break.

There really isn't too much to say about the past couple of months. It's been really bad, Dad's pretty much the same, I'm burned out, and Mom's exhausted. There's your update.

But seeing as I seriously owe you, I thought I'd at least cap off 2010 with one more and then make some sort of resolution to update on a more regular basis...that'll probably last like 2 weeks or so...

Two words I feel embody the spirit of this holiday season for my mom and myself would be "shitty" and "sad." And I mean that in all sincerity, and hopefully without offense to you. There's this giant emptiness that somehow always hurts, even though Dad is actually still with us (which, shhhh I'm not supposed to say this, actually makes it harder). Sometimes I think if my dad had been a little more of a wallflower, less dynamic, not quite such a big personality, I wouldn't miss him so much...but then again, I would never wish that. I'm heart broken. You would think after 7 months it would start hurting less, but it doesn't. And this is why the holidays were shitty and sad for me.

However, we have been absolutely overwhelmed by kindness and generosity this holiday season as well, much of it very surprising and a true testiment to my dad's character. I'm bitter, and sarcastic...but I do believe in the strength of the human spirit, and (yes, Nana) the possibility of miracles.

And so with that, I'll just bid a big fat ADIOS to 2010 with my two middle fingers flying high and welcome this new year with arms wide open.

P.S. Next time I write, I promise to actually update you on details of Dad's condition. Cheers.

My poor little lab partner!

Brace yourselves. Just want to be upfront, it has NOT been a pretty couple of weeks. But don't worry, I think I see the light at the end of the tunnel (this particular one, anyways)...and it's in the form of Rod Stewart singing the classics on DWTS and 10mg of diazapam. Mmmmm...

I just want you all to know that I, as a person, have changed drastically. And unfortunately no, not in the way that could get me on Oprah. Although, I guess some would call it an "ah-ha moment" as I stood outside my chemistry lab this afternoon, safety goggles on forehead, screaming and crying (a la Shirley Maclaine in Terms of Endearment) at the home health nurse on the phone that she "better find his goddamn vein and start the f*ing antibiotics...LIKE NOW!! I AM LOSING MY MIND!!" I may not be too cute anymore, but I'm certainly still a head turner.

So why the IV antibiotics? Well. Let. Me. Tell. You. UGH. I would estimate that for the past 3 weeks, Dad has been markedly declining. Yes, I said it, he's been getting worse (like I said, Little Miss Sunshine is long gone). His muscles were so tight I could barely dress him. He started the profuse sweating thing again. He never slept. He was grinding his teeth constantly. He certainly hasn't been talking or mouthing words. Needless to say he's been miserable. So last weekend, the kicker: he started running a fever. I took him to the ER. The triage nurse was so nice to me I actually started crying (and resented her for it?) and then naturally...after waiting three hours...there's nothing wrong with him. Must be some neurological thing. "That'll be a $150 co-pay. Thank you for your business, Goodbye!"

I mean, when you're sick, the last thing you want to hear is that there's nothing you can do but "wait it out." I just wanted him to feel better! I just want to know he's not in acute pain. He can't tell me it hurts, but his body is telling us something is wrong. And sometimes it seems like a doctor will just glance through his file, see that his prognosis is like, nada, and write it off as though it's a waste of time to do anything. Believe me, I get it. But we have to try something, right? Right?? Is that so much to freaking ask? See...getting all worked up.

Cut to precisely one week later. Damn culture takes too long to grow, if you ask me. Raging Pseudomonas urinary tract infection. Now, if you've never had a UTI, count your blessings. So painful. And he's probably had it for a good 2 weeks. So although I cringe to think of how much pain he was in (and couldn't say anything!), and after much struggle, he is now on IV antibiotics here at home. I couldn't get an appointment to get a PICC line put in until tomorrow morning (almost 48 hours after the diagnosis! Umm...kidney infection? Bateremia? Sepsis? No, no, not a concern.) But I talked the home health nurse into coming out and putting in a temporary IV this afternoon to get him started. Now, it may be the addition of diazapam to his nightly routine as well, but he's already doing better. No more sweating, no fever, no teeth-grinding...just more peace. And oddly enough, more alert.

Maybe I'm totally irrational and crazy, and this past couple days is just how the system works and I better get used to it. I don't know, I've never done this before. But like I said, I think there's a light at the end of this tunnel. My guess would be this is first of many UTI's in his future but the lesson is to really focus attention on the ways his body can tell us when he's sick. I hate lessons.

Good news is he's already giving me kisses on the cheek again and I can hear him snoring from out here...music to my ears. So worth it.

*Thanks for all the wonderful emails! Keep 'em coming! Sorry if I didn't get a chance to email you back, but I will eventually and rest assured, I read your note to him...probably multiple times.

Finally a little sunshine!

Well, let's start by talking about the mood around here lately: ugh. It's just been so gloomy outside (umm, hello, I thought this was southern California, not Seattle). So for those of you who haven't been out here these past two weeks, take it from me, it's been downright gross. And as my luck would have it, we have so far been experiencing one of the two extremes of this fall's weather (a balmy 110 degrees OR 60 degrees and pouring rain) at the exact moment I have to get Dad loaded up in the van and over to therapy. Which means by the time we arrive I am either a) red-faced, sweaty and swearing under my breath, or b) soaking wet, frizzed out and swearing under my breath. Oh who am I kidding...I swear out loud. Seriously. And I'll be honest, as of late I've upgraded to the F word...that's right, mouth like a sailor on this one here.

But the important thing is that Dad always gets to therapy on time and right to work. Lately we've been putting him in a standing frame, which helps him with balance and gets him to bear weight through his legs again. His ankles are extremely tight (the Achilles tendon shortens really easily when someone is off their legs for an extended period of time, imagine pointing your toes), but the standing frame will help stretch them out. Working in the standing frame has also started changing his tone, which is good in some ways, bad in others. Now instead of one leg bent, one straight, they are both very straight. He's also been straightening out his torso, which makes it difficult for him to sit in his wheelchair for longer periods of time. After about an hour he begins straightening his legs and torso and sort of slides out (best analogy would be an unhappy toddler sliding out of his highchair). It's not purposeful, we think as he gets tired, the spastic tone kind of takes over. As frustrating as it is for us, it must be infinitely more frustrating for him. It's like over time he's just getting wound tighter and tighter.

Another source of frustration has been his arms and hands. At this point they are incredibly tight. To put it into perspective, it takes two arms and all of my body weight to straighten his arm at the elbow when he's at his tightest. It's become increasingly difficult to bathe and dress him and there are times I worry I'll dislocate his shoulder. That would be bad...

But the good news is that we have new braces for his elbows and wrists, and when we can get them on him, they seem to be helping. We also got to see this new physiatrist a little early, and he's doubled Dad's dose of muscle relaxer and started him on ambien at night. Honestly sometimes the only time Mom and I have peace of mind is when we've knocked him out with a huge dose of muscle relaxers, ambien and melatonin. I know that sounds bad but he sleeps so soundly. His arms relax down to his sides and sometimes he even snores. Seems almost normal. At least we know he's not in pain or uncomfortable. Makes it much easier to enjoy a nice glass of wine and DWTS (I assume no one reading this lives in a cave so you are familiar with the acronym). Yes, I watch that crap now. And Bristol should have been booted off last week. I was enraged.

As far as Mom and I go, we are doing the best we can. People like to ask what we are doing to take care of ourselves, and although each day the importance of that is more evident, what are we supposed to do? Short of pulling a "Thelma and Louise" in the minivan, I'm at a loss. As of late, the routine goes: tranquilize Dad, crack open a bottle of wine (red for me, white for Mom) and queue the bad TV. A solid sense of humor certainly helps! ;)

*A note for those of you who didn't receive an email:

Send Tom a letter! Mom has started something of a letter writing campaign to Dad. We've noticed that when we read letters and cards to him he pays close attention and seems to really enjoy it. So if you're able, send us a letter that we can read to Dad to keep him updated on what's going on in your life. Even if you don't know him that well, it's always nice for him to hear about people other and me and Mom (we've gotten some cute ones from former students and friends; he really does enjoy it). And by letter I mean email of course. You can send it to me or Mom:

allisoncomstock@gmail.com

acomstock@roadrunner.com

Thanks!