Wednesday, May 30, 2007
The Relay
Mark, however, is doing great! I can't believe how well he bounced back in just two days! It was wonderful to have a co-parent during my adventure with Brendan today. He drove Alex to school. (I know, I know. He's not supposed to be driving. But it's only three blocks.) And he picked up medicine and diapers for me (to save the couches). He fetched towels and did assorted helpful little things. We had an IEP meeting for Alex today, too, and Mark was able to go so that I could stay with Bren. If this had happened a few days ago (or on any number of days when Mark is out of commission), it would have been far more challenging.
Now I just hope that Brendan doesn't feel a need to share his little bug with the rest of the family!
Tuesday, May 29, 2007
Home Again
Monday, May 28, 2007
Looking Up
They gave him a drip of calcium something-or-other before I arrived yesterday, and they changed his blood pressure medication from verapamil to metoprolol. That seems to be helping a lot. They still don't know if they are going to need to do a phlebotomy to thin his blood out further or if this-all will be enough. Hopefully we'll find out today.
The kids are holding up reasonably well. Kate is doing her usual avoidant routine. She seems to take great pains to be "normal" during these times. I know she worries about him--but I don't think anyone else would know that from watching her. She functions at these times by pretending that nothing is wrong. The only thing she has asked me was whether he was home (upstairs) or in the hospital. I have told her in the past, though, that I will never hide something truly serious from her, that if I know he is going to die, I will tell her. As morbid as that may seem to those of you with "normal" lives, I really think knowing that she can count on that gives her a kind of freedom to go about her life and not worry about every bump in the road.
Alex is doing remarkably well. He has pitched two royal fits (one with me, one with my dad), but otherwise, he seems far more calm than he usually does when Mark has one of his longer spells in the hospital. He is not pacing up and down, flapping his hands and talking a mile a minute. He did ask several times if Dad was going to be okay. He didn't seem satisfied with my simple "yes," so at bedtime we sat down and had a chat. "But this seems serious," he said. I told him that yes, it is serious, but not for right now. It's serious because if they don't fix it, the pain will just go on and on and the lack of oxygen will damage his heart, which would cause worse problems down the road. I told him about the ICU, that most people who go into the ICU come out alive, that going there is not a sign that The End has come. However, I said, NOT being in the ICU is a pretty good sign that he's going to be okay. I think that was a "marker" he could understand.
Now Brendan ... well, what can I say about Brendan? He's just his regular self, wound a little tighter. He had a couple of crises yesterday. He wanted the TV, for one, and I gave it to Kaitlyn. Then, in the evening, when Alex was serving up a couple of bowls of CheezIts for snack, he dropped a few into a bowl with orange peels and then put them back in the box. Egad! He contaminated them! Brendan was jumping up and down by my chair, distraught and sobbing. But other than these "breakthrough" moments, he seems to be holding up pretty well.
And me? Well, I'm okay now. This really threw me for a loop. He was in the hospital Tuesday for the exact same set of symptoms, and we were told that he was fine. And then ... blam! It was like driving through an intersection and getting T-boned by a car that ran a stop sign. For two full days, I felt like I was spinning through that intersection, trying to get a grip on the wheel and find the brake! I had let my guard down, which I should know by now NOT TO DO!! But ... one has a hard time living always in a state of alert. I think it's natural, when things go relatively smoothly for a while, to want to relax. But I was so caught off guard, that I was in a seriously befuddled state for awhile. I mean, I went about my business, driving, taking care of kids, etc. But my emotions were a wreck. I had to go into this sort of deep freeze to avoid having them spill out all over the place. When I finally came out of it, Becca commented that I could talk again. Yep, that's how "frozen" I was. I couldn't seem to find the right words! When I'd talk to people, the words would just stick in the muck of my mind and it was SUCH a struggle to pry them lose. But that has passed now, and I feel normal again. (Hey, I heard that! Yes, I know that's a relative terms, for one such as myself! You don't need to rub it in.)
Well, I've started my poetry class with Sandy Soli, and I am loving it! I have my first week's packet due by noon tomorrow so I think I'll sign off and go smooth out some loose edges and get that ready to send on over. More soon!
Sunday, May 27, 2007
A Brief Update
Friday, May 25, 2007
Update on Mark
Up to OHSU
Tuesday, May 22, 2007
Ah ... Poop!
The tests, of course, revealed nothing. It took several doses of Dilaudid to get the pain somewhat under control. They also had to treat the nausea and then, eventually, the itching that he gets as a result of the narcotics. They also gave him Valium after a couple of hours.
I was hurting pretty badly today and after a couple of hours, I HAD to lay down. Obviously I wasn't going to lay down on the floor! So I put two chairs together, got three blankets out of the warmer, rolled them up and put under key achy spots, propped my feet up on the garbage can, and ... voila! The thing is ... I fell asleep! Mark asked me for something (ice?), and I just couldn't get up. I remember surfacing several times and noticing that he was having arrhythmias and that he was having shooting pain with each irregular beat. I knew the nurse came in and was concerned. And still, I couldn't get up. As it turns out, the arrhythmias were just PVCs, which are generally benign. Why they were causing him pain is anyone's guess!
I finally did manage to shake myself awake when they started talking about releasing him. I got home in time to pick up Bren at Becca's and then Alex at school. And then I had a lovely chat with Joellen, who always comes over to help out while I'm gone taking Mark to the pain center. (Obviously, he didn't go to his visit today.) She stayed until 6:30, when I left to go put in some time at the community garden.
See, the thing is ... when I signed up for the community garden, I pictured planting cute little seeds, showing up to water and weed ... I didn't realize that we all get to help take down and put up fencing and do little things like ... spread manure! Dang, that's hard word! Either that, or I'm a total wimp, but I did notice that the gal who was working with me was also walking like a robot by the time we rinsed out the wheelbarrows and put the tools away.
This gal that I met ... Anita. She seems really nice. Her husband fought brain cancer, but has been cancer free for five years. He can't work, however, and so is on disability. I felt an instant sort of bond with her. And even better ... she goes to my church! Of course, so do about 2,000 other people, which just might explain why I've never met her before. Hopefully, I'll see more of her as we work our little plots this summer.
Monday, May 21, 2007
Just Cleaning Up
Anyway, I turned over my loveseat to clean beneath it. (Brendan has turned it into some kind of wall, behind/on which he is playing an elaborate game of Spiderman.) I was amused at what I found there. I retrieved:
--forty-nine cents
--three colored pencils
--a picture of Kaitlyn when she was three years old
--a marker
--a baby spoon (???--we don't even have a baby!)
--a regular kitchen spoon
--half of a plastic Easter egg
--two of Kaitlyn's hair ties that disappeared practically the moment I brought them home
--about twenty-five rubber bands
--several Legos
--a one-inch Chewbacca
--a Hot Wheels car
--Kaitlyn's lip gloss (which also disappeared upon entering the house. Sometimes it amazing me that Kaitlyn herself doesn't vanish!)
--a red checker
--a pair of black nylons
--a Reader's Digest
--the good tweezers
--assorted miniature plastic swords and lightsabers
--several Spiderman valentines
--a flattened gold party hat
What I want to know is: why do I only find pennies and nickels hidden away in the couch. I would really have loved to have found the twenty dollar bill Mark misplaced last week. Oh, well ...
It's payday today! Not the big one. That's not until the third. But I get to go fill up the gas tank. (The gas light went on yesterday.) And I get to buy groceries! We have no milk, no eggs, no bread, no yogurt, no fruit, no cereal... No, I take that back. We have one bowl of Fruit Loops left. In other words, I am eager to get out there and get some FOOD!
Mark was in the hospital last night. He had been fine earlier in the day. He even went to church with me, which was a real treat, since he almost never does anymore. (I have to leave by 8:40, and he's generally not well at that point in the day.) He even felt okay in the afternoon, and then... bam! Out of the blue, the pain hit. I couldn't find Kaitlyn. I knew she was at Shawne's, but I called all four of their numbers and got no response. (I think Pieper had her cell off, and Shawne's cell went through the washing machine this week. Oops! The girls apparently had their music up so loud they couldn't hear the personal line upstairs or the business phone downstairs.) I can't leave the boys alone and didn't have enough gas to go and come back and then go back to pick him up later. And the thought of spending hours in the hospital lobby with my boys ... well, let's just say I can think of many other things I'd rather do. Like get my teeth drilled. So I called my aunt Kathy. She and Uncle Ken volunteered a few months ago to be "on call" Sundays and Wednesdays if I needed someone. I hate asking for help, especially if the person I'm asking has to go out of his/her way to provide it, but since I couldn't find Kate to watch the boys, I went ahead and called. I thought I would get the boys down to bed and go relieve Kathy, but she stayed with him until they released him--four hours after she picked him up at my front door. I could just squeeze her to pieces right now!
Well, Brendan is still climbing along the top of his "wall," growling and whispering at some unseen enemy ... Who knew an overturned couch could be so much fun?!?
Thursday, May 17, 2007
Some Welcome Down Time
Oh, oh, oh! I can't believe I almost forgot to tell you this! I have a partner for our HFA/AS game night that I've been dreaming of starting for years! I didn't want to go ahead with this until I had someone lined up to help me if things around here were on the fritz, but I didn't know where to find such a person. Well, I put it on our prayer chain (and prayed about it myself, as I have done many times). A woman named Amy emailed me and said that she is interested in such a thing herself, and since there isn't any such group available reasonably close, she will help me start it! I am so excited! My children's pastor gave me the go ahead to pursue it, months ago. Now I have to go through the paperwork to get authorization to use our church. Then, one Friday evening each month, we'll open the downstairs. We'll have video games. (The church has plenty of televisions. We, personally, have plenty [i.e. too many!] game systems and games.) We'll have a room with board games (of which we also have many), a movie room (where the NT siblings tended to hang out at the game night I attended in Gresham, once upon a time), a snack room (where the adults tended to congregate), and most likely an open gym. There's not going to be anything structured. At least not yet. And every parent will be responsible for his/her own child(ren). Mostly it'll just be a place for our kids to hang out with like minded peers and hopefully make a friend or two. Also, it gives parents and siblings a group of people who share common experiences, who can understand the joys and challenges of this life in a personal way. Stay tuned for updates!
Tuesday, May 15, 2007
To the ER, again.
I'm never quite sure how to "be" during these episodes. I know that I am stressed, deep down inside, because I cannot concentrate on writing during these times. The words just seem flat in my head. I feel restless and tend to sit there, embroidering, while docs and techs and nurses try this and that. I often wonder if they think I don't care. I can FEEL the flatness in my face. It's just ... I can't get too upset until I know what's going on. If I let myself get all twisted up whenever he has chest pain, I'll be a basket case! But I can feel myself steeling up inside, just in case. I just can't help wondering if it looks to the world like I am heartless and uncaring. I hope not, but ... I can't really worry about people's opinions of me on top of everything else. And there really isn't anything I can do for Mark. I get him ice chips when he wants them, but he doesn't like to be touched when he's hurting and he's a little old for me to be singing him lullabies. So I just sit there... and wait.
Monday, May 14, 2007
Happy Mother's Day (a Day Late)
After church, I went home to see if Mark would be able to come with us for lunch, but he wasn't up to it. I left him in bed and went to my parents' house for a BBQ. My dad was a prince, wouldn't let Mom or me do any work. (I asked him once, and he replied, "No, you may NOT help." Okay. Works for me!) If was so tired though that I only stayed a couple of hours. Went home and had Kaitlyn watch Brendan so I could take an actual nap (i.e. the kind behind closed doors rather than one-eye-open-dozing-on-the-couch kind of nap I tend to take a lot lately). It was just ... yummy! When I woke up, it was dinner time, and the kids, of course, wanted to know what was for dinner. Mark rose to the occasion, delivering a scrumptious chicken/pepper/onion dish with a tangy sauce that he'd created from scratch. He was pretty worn out once he was done cooking. He's not used to standing that long at a stretch--which made it all the more special to me.
Friday, May 11, 2007
A Busy Day
I had lunch with Andrea, a chaotic affair as usual. She is exhausted, and I was internally applauding her valiant efforts to keep from biting the heads of the kids, who were not on their best behavior yesterday, to say the least. At one point, she saw Emma outside doing something and started to rush out, undoubtedly carrying a stream of harsh words with her, but she stopped at the door instead and turned around and looked at me. "Count to ten," I said. When she looked unconvinced, I added, "And backwards." She took a couple of deep breaths and went out--and handled the situation just fine. My hat's off to her...
After school the girls came over to get ready for the dance. It was chatter, chatter, chatter, giggle, giggle, giggle ... funky music on the stereo in the hallway upstairs ... Pieper came over to bring Shawne's dress, which she had tried to sew up to a style more appropriate for a 12-year-old. It was still awfully low. Shawne badgered her mom. "It's fine, Mom. It's fine." Finally Pieper turned to me. "Well, ask Jenn what she thinks." Oh, dear. Shawne came into the kitchen and said, "As my second mother, what do you think?" I had to agree with Pieper, not just because she was the mom but because ... she was right! I told her, "You don't want the boys spending the whole night looking at your chest." She sighed and gave in. Later, Pieper was back, after dropping Austin at his baseball game. I could hear Pieper and Shawne upstairs, bickering. Well, Shawne was bickering, and Pieper had that tone one uses when one's child is on her last nerve and one has two options: be extremely civil or blow a fuse. When Pieper came down, she said something like, "God, help me. I'm not sure I'm up to raising a daughter." All I could say was, "I hear you!" The girls went off happy, though, and came back happy, although they had to blow off the tension of several situations: one boy that was "dirty dancing," one crush who didn't show up, one girl who cut in and stole a dance, two girls who were crying ... Mark listened to them for awhile and then said, "I have to go upstairs. I'm getting dizzy." Yeah, me, too! But, dizzy or not, I hung out close by, working on my pictures, so that I could listen in on the drama of the day. One can learn a lot by pretending to be absorbed in something else when one's children and their friends are nearby!
Alex's student led conferences were much less dramatic, although to watch Alex pacing around the room, stuttering and making this odd guttural noise as he showed us all of his work, you wouldn't know it! Maybe it was equally dramatic for him! He was VERY happy to be showing us his space and his work. I've been there before, several times, but still ... It was fun to see him so proud of his classroom and his achievements. I had to remind him a couple of time, though, that if he expects me to understand what he's saying, he can't be pacing around behind me and/or facing the opposite direction! He'll get it, in due time.
Today, the boys are upstairs, playing Spiderman Something-or-Other on Alex's computer. The girls, still sleepy, are eating coffee cake on the couch and watching Reba. And me? Well, it's high time I get off my duff and start cleaning this house! I'm going to make the kids do likewise, but they don't know that yet! I'm going to let them enjoy their lazy morning a little longer.
Wednesday, May 9, 2007
Here, There, and Everywhere
By 11:30, we were on the road again. I came home, making a few stops on the way. We were looking for a particular game that Alex wants to buy with his birthday money, and Mark wanted to go to Barnes and Nobel to spend HIS birthday gift card. Then we had to stop to pick up a prescription, etc. When I got home, I crashed. Put a show on for Brendan and fell asleep on the couch for half an hour. Then I had to go get Alex at school, drop him at home, drop Brendan at Becca's and head out to Kaitlyn's track meet. It was their last one of the season. It was so funny. Kaitlyn lost her shoe during her leg of the relay! Even so, they still made their "team best" for the season. They didn't medal or anything, but they did pretty well, all things considered. Then home, to pick up Brendan and run Kaitlyn to youth group. And finally ... done! The taxi has been put away for the night.
Tomorrow I only have a local field trip with Brendan's preschool class and lunch with Andrea. Piece of cake! But the dance is tomorrow, and the girls will be here beforehand, getting ready, and ... they are feuding still/again. Not all of them. Only one, a girl who is often a sweetheart but whose "princess complex" has alienated her from the rest of the group. Could be tense! But we'll hope for the best. In any case, it's bound to be lively around here tomorrow.
Saturday, May 5, 2007
An Update
The next day we found out the not-so-good news: Mark is having atrial arrhythmias. He's also having ventricular arrhythmias, but basically that's not a big deal. But atrial arrhythmias are a whole different ball game. They could raise his risk for stroke, depending on what kind he's having, which we don't know yet. We have an appointment at OHSU on Wednesday to decide what our next step should be.
The other concerning thing is a bunch of sores on both legs that are not healing. While we don't know for sure, it could well be due to his impaired circulation. That, too, we will address on Wednesday.
The third thing is perhaps the simplest of all, but may be the trickiest to solve, at this point. Mark's tooth broke. Any dental work carries the risk of endocarditis for him. A couple of years ago, the specialist at Good Sam told him, "You could live 10, or maybe even 15 more years--as long as you don't get endocarditis." It's not something he wants to mess with! Well, even though he doesn't seem to have an abscess or anything, he's got on antibiotics within hours. Our problem? Medicare doesn't cover dental work, and getting this tooth pulled is not going to be cheap. I'm not quite sure how we're going to deal with that one. Anybody know any dentists who specialize in high risk, uninsured patients?
Other than that, life goes well in our neck of the woods. Kate is her usual socialite self. Alex is his usual non-socialite self! :) (He and I have had some of the most interesting discussion lately. Leave it that kid to ask all the hard questions! He's the only kid I know who asks people to be quiet so that he can hear the news on the radio or who would rather sit and watch a documentary on Biblical history than play outside.) And Brendan ... well, now that the sun is out, so is he! He runs and runs with the neighbor kids, wears himself out thoroughly just being a kid.
Wednesday, May 2, 2007
Kids and Stuff
And here is Perri herself. (Drum roll, please. Let's see if I can get this beast to allow me two photos without getting all funky on me.) Okay, fine. If the Powers That Be want to put both pictures at the top, FINE! I'm not going to argue with them. By the way, Perri doesn't always go around wearing a canary hat. It's just for special occasions! :)
And me? You want to know what has been going on with me, huh? Well, a big chunk of the last couple of weeks has gone to proofing Perri's (excellent!) manuscript. (It would be simpler if my laptop wasn't incredibly touchy and prone to shutting off without notice if the cord gets bumped. It's also incredibly slow starting back up. It's like great-grandmother, climbing the stairs to read stories to the kids. By the time she gets there, the kids are asleep! But, hey! At least I have a laptop!)
What else? Well, I doubt you want to hear about all the cooking and cleaning, vacuuming and carpet cleaning ... I don't even have any hospital visits to share with you guys. Not that I'm complaining!!! It's really rather strange, actually. About a week ago, Mark quit taking his morphine, completely. Of course, being Mark, he didn't tell anybody for several days. He had some mild withdrawal systems, but nothing major. And he hasn't had any terrible pain since then. Doesn't it seem like it should be the opposite? I'm confused ... But, whatever the reason, we are all grateful.
His new-ish arrhythmia are bothering him more and more, though, especially at night. They tend to kick in if he lays down. He sleeps propped up, but often that's still not enough. Luckily for him, his desk chair is cushy and, while it doesn't exactly recline, it tilts back. He can (and does) sleep there quite a bit.
He was at work for seven hours today. Seven hours! I can't even tell you how long it has been since he worked that long at a stretch. I was afraid he would come home sick, but he said he felt fine. He looked fine, too! He's asleep now, but he's not sick, so ... that's pretty darn good, I'm thinking! I don't want to get my hopes up, but this could be a positive thing.
Otherwise, there is really not much to tell. Kaitlyn is still/always wrapped up in her junior high dramas. How did any of us ever survive those years? Pieper--Kaitlyn's best friend's mom--called the other day, and we both sounded weary. We had to laugh, though, when we realized that we were both worn out over the same thing: our girls' constant melodramas! And we're not even the ones living them! We're just ... what are we even? The audience? No, far more than that. Mediators, maybe? Sort of. It's just tricky. You want to let the poor kid know you feel her pain, and you definitely don't want to sound like you're taking the other guy's side--unless you've heard the whole story and can be quite certain that your daughter was wrong. And even then, you still want it to be clear that you're on her side, which said daughter seems to doubt all too easily. And then you want to provide comfort and instruction, all the while biting back the words, "If you'd just grow up a little, none of this would even be an issue!" But then ... that's exactly what they are doing: growing up. And while these things may seem petty to me, they are gargantuan to a twelve-year-old.
I was reminded the other day of just how young she still is. I always put the boys to bed. We'll say prayers, sometimes read a story and/or I'll lay with them a bit. But lately, since Kaitlyn goes to bed as late as--or sometimes even later than--me, I've gotten into the habit of kissing her good night and calling it good. The other night, about ten o'clock, I was on the computer, writing. She just stood on the bottom of the stairs, asking if I was almost done. It took me a while to realize that she was actually waiting for me. "Oh!" I said, "You want me to tuck you in?" "Well, you are my mommy," she said. Yes. Yes, I am. And there's no need to rush this whole growing up business, now is there?