The Adventure Continues

Hi, all! Last week was nice and slow for the most part. Someone asked me what I'd been doing lately, and I had to look at the calendar because I couldn't really think of anything. Lo and behold, there wasn't anything on the calendar. That has changed in the last few days, though!

On Monday, Becca watched Brendan so that I could do get a day on my own. I packed a PBJ and a book and went to Fogarty Creek. Climbed up on the big rock and sat there for nearly three hours, reading. I noticed, after awhile, that I was the only woman who came up there! Teens and preteens seem to love it. About three men, just a few years older than me, came up. But no women. I guess ... I'm not normal! But I just don't think it's "fair" that men and children get to have all the fun in life and women get to sit around and watch! I ... just can't live my life that way, even if I get looked at like I'm rather odd!

I came back SO refreshed! I was only gone for seven hours, but I came back feeling all loose. I could tell a difference in the muscles of my face. But then, at 2:30 in the morning, Mark woke me up. He was in a LOT of pain. I called the medics, who hurried him off without their preliminary "stuff" they usually do in our living room. I had SUCH a hard time deciding to stay home, but the only person I could have called was Jason, and he had a medical procedure going on the next day so I didn't want to ask him. And I know, after the flu incident, that once Kaitlyn is asleep, she's not really able to be aware of her brothers and their needs and what-all might be going on in the house. So I stayed home. I got a call in the morning that they were releasing him. I went and picked him up, came home, and called his specialist at OHSU. They got him in yesterday morning, which was great! except that they have very little to offer. They are going to look over the cardiac catheterization that Dr. H did a couple of years ago. If the cardiac anatomy wasn't investigated, they will do a new one within the next couple of weeks. I am not putting much hope in this, though. They said straight out yesterday, "We're sorry. We just don't know what to do for you."

The trip to OHSU (with a brief stop at Borders and Fred Meyers on the way home) wore Mark out. He had slept ALL of the day before (except for about one hour in the evening) and much of the night as well. When we got home yesterday, he went to bed. I took the boys to a children's concert at the community center in Portland and came back to get him for Joellen's surprise half-birthday party at my parents'. But he couldn't get up to come. So I took the kids and went off.

We had a good time. Dad watched the boys so that they could swim. Dinner was good, the company was great, the food was yummy. But I was SO tired by this point, and Alex (who had been "going" all day with me) was ... let's just say, challenging. I was about at my wit's end with him, although he didn't do anything "bad," per se. I had just completely lost my ability to be objective and patient. (He is having increasing challenges these days, showing a LOT of signs of stress. One of my goals for today is to see if I can get the name of the therapist in Dundee that has experience working with autistic kids. I think he's going to need much more help than I can give him in the months and years ahead.)

Anyway, we came home. I put Brendan to bed and ordered Alex to do an hour of reading (which he enjoys anyway, and which gives me some time to catch my breath). About 10ish, I went to bed, but woke up again to Mark's claim of severe pain. If he takes more than one nitro, we have to go in, because of possible blood pressure issues. I wasn't going to call the medics again. It's a volunteer fire department, and they need their rest, too. Besides, I pretty much knew it wasn't an emergency. But the doctors had said, just that morning, that we should err on the side of caution and continue going in to the ER for any severe chest pain. Clearly, I couldn't leave Brendan with Kaitlyn, so I took him with me. I went back and forth on whether or not to stay with Mark or go home and be with the kids, but the fact that Kate doesn't wake up for NOTHIN', and the fact that I can't find the cell phone, and the "minor" issue of Alex's mounting agitation and my concern for his state of mind if he woke up and found himself (for all practical purposes) alone ... I decided to come home.

I had slept for an hour when the phone rang. They were releasing Mark. I dragged myself awake, trying to imagine the drive back. I was SO tired. Then five minutes later, I got another call. Mark's pain had suddenly returned with a vengeance, and they were keeping him for awhile. I hate to admit that I was relieved. That sounds ugly, doesn't it? I didn't WANT him to be in pain. I was just SO tired. All I could think about was sleep--and trying to make that drive again safely. (On the way home earlier, everything kept going out of focus as I'd start to fall asleep, then I'd jerk myself awake for a few more minutes... It's really scary to have to drive like that.) Anyway, after the second call, I went right back to sleep. When I called them at 8:50 and they said he was ready to go, I was MUCH more equipped to go get him.

There was one charming moment last night, though. Brendan thought the whole thing was a great adventure. Then, to top it all off, when we got home, there were four bats swooping over the parking lot and lawn. He was thrilled! He's been waiting to see bats, but so far this year, we hadn't seen any. He went inside and climbed up on the couch to watch out the window. Then he got down, found his collection of live lady bugs, and opened the door. He tossed out a few for the night creatures who had him so fascinated! :)

Lots of Fun!

We had a great time on our recent camping trip! I had made the reservations in March, and as the time got closer, I wondered if I should cancel them. If you don't cancel at least three days out, you lose one night's fee. Since we were only staying one night, that kind of put a kink in things, for us! But I decided that it was work risking $35 for a chance to make some memories with the kids. We weren't sure, up until a few hours before we left, whether or not we would be able to go. Mark had to go into the hospital on Saturday night. I didn't know, until Jason brought him home at 4 a.m., whether he would be released or whether he would be transferred up to OHSU again. Even if he WAS released, would he be able to go??? Well, he was determined that he wanted to make this trip happen. He slept a few hours while I finished packing up the van. Then at noon we left.

We stopped on the way for a scrumptious Father's Day BBQ at my parents' house. Mary and Nate and Mark and Joellen were there, and we laughed so hard around the table. Something about red tides and blue moons ... Don't ask! :) Anyway, the kids were eager to get on the road so about 3:00, we said our farewells. Dad slipped me a twenty and told me to "do something fun" while we were down there. Okay!

We got to our campsite about 6:00. Mark was already exhausted. Well, he had been pretty much dragging the whole day, and by evening he was clearly beat. But I was tell he was trying really hard to stay "up" for the kids. We roasted hot dogs and made s'mores. Then we went into the yurt and tried to play UNO, but Mark (who was laying down by then) kept teasing Alex, which Alex, of course, "had" to respond to with repeated pillow beatings ... Kaitlyn and I finally gave up on the game. The boys gave up on "beating up" their father when I suggested we roast more marshmallows! (To me, THAT is the definition of camping. If you don't have roasted marshmallows, the camping excursions is not quite authentic!)

Everyone went to sleep pretty easily, but early in the morning, Brendan was up, begging for the donuts he had been anticipating for days. I let him have his and tried to get a little more sleep, but ... well, we had a problem. See, there were five of us and SIX packages of donuts. Letting extra donuts lie just does NOT work for Brendan. He kept coming over and asking me if he could have the extra donuts--over and over and over--until I had to hold myself back from sitting up and wringing his neck. I finally decided that we would all be better off if I gave up on the idea of sleeping and instead asked Mark to bring me a cup of the coffee he had already brewed over the fire. Once I had some caffeine in me, I felt much more civil (and Brendan seemed much cuter. Funny how that works!)

After breakfast, we packed up and set out for Seaside. The kids rode the carousel at the mall, then we looked around a bit. Lunch at a nice little cafe preceded a ride on the bumper cars. THAT was a hoot! It gave me a (short-lived) headache, but ... oh, well! Who said kids should have all the fun! Then we went down to the beach, waded in the surf, flew (or rather, tried to fly) the kite ... Then, homeward! and, of course, the obligatory stop at Dairy Queen on the way ...
I was nervous about Mark, afraid he would get really sick from the exertion. And he DID clearly push himself quite hard. He slept for most of yesterday and today. But he didn't end up in the hospital. Yea! All around, it was a pretty darn good weekend.

A Lovely Day

The thing about having chronic challenges in one's life is that it makes the ordinary days just seem so lovely! I didn't do much yesterday that's worth reporting. I'm taking a six-week online poetry workshop that I am just LOVING. The poem I worked on yesterday was HARD, however. I didn't realize quite how challenging it would be to imitate the rhythm and movement of a tango. Sounds simple, right? Well, um ... it's not. Being rather bull-headed, however, once I'd decided to do this, I HAD to finish it. It only took me ... fourteen hours, to come up with a rough draft. Of course, I wasn't sitting in front of the computer the whole time! It was the kids last day of school, and so I drove Alex to and from school, drove Kaitlyn and her friends to and from a party, then to another's friend's house. I drove Brendan to a play date with his cousin (just around the block). I cooked and did laundry and ... well, you get the picture! But my mind was wrapped up in that poem until I got that framework down on paper. (Well, on virtual paper anyway.) Today's poem, thank Bob, came out much easier. It only took me 1 1/2 hours to write.

Anyway, other than that, I have nothing to report! Mark was not in the hospital. He did have some pain, but nothing major, and was able to be up and about with the family. And the kids, newly freed from school, were blissed out. (It helped that, like last year, I let Alex have the WHOLE day on "screens" to celebrate.)

Just a Note

We were in the ER again last night. Mark was having pain in his chest and down his left arm. The doc on call was going to send him to OHSU, but the specialist up there said that they already know he doesn't have any kind of blockage, per se, that it's just his polycythemia causing the problems, most likely. He suggested giving him fluids, which did help dilute his blood enough to make it easier for Mark's heart to pump it. After about 10 hours, he was able to come home.

I drove him the hospital, but I didn't have anyone to pick up Alex from school so I drove back home. Alex responded to the news that I was going back to the hospital by coming completely unglued. He wanted me to help him with his Egg Drop for field day. Even though I promised to help him when I got home, he screamed and sobbed. I looked over once, and he was crouched behind the couch, holding onto the arm, as if he was hiding from something, or bracing himself against a potential attack from some unseen source. The worst of it is ... I yelled back. "You're being ridiculous! Stop is RIGHT NOW! I can't be everywhere at once. I will help you LATER!"

Well, I did help him. When they still hadn't decided what to do with Mark by 7 p.m., I came back home and helped Alex install his "suspension system" inside his fried onion container, pad it with newspaper, and seal the whole thing with loads of packing tape. Then I put the boys to bed and settled in to wait. If Mark was going to be moved up to OHSU, I didn't want to make a third trip into Newberg. I would just see him in the morning. But if he was going to come home, I would have to go get him. Or so I thought. When Jason (who had the day off) called and volunteered to drive in and pick him up for me, I could have just bowed down and kissed his feet. I was asleep by the time Mark got home.

I talked with his nurse, Andrea, at the hospital for quite a while. I told her that I'm just having such a hard time lately with so much being unknown, that I just want somebody to be able to give me some idea of what's ahead. And ... nobody knows. She said (well, a rough paraphrase), "You know, I used to be so nervous when I started working with him a few years ago. He'd come in and his oxygen saturations would be in the seventies and I think, 'This is one sick guy!' But you were always so calm, just smiling and doing your embroidery ... I wonder if maybe the reality of how sick he really is has just finally caught up with you." Yeah, maybe it has.

I think the hardest part for me is just not knowing how to "be." I don't want to think constantly about death and parting, but I feel like I'm always gripping the bar in the tramway, never able to completely enjoy the ride for fear of losing my balance and being tossed to the ground ... And yet, he could be around for years. I don't want him or the kids or myself to miss out on life because I was so afraid of being caught off guard by his dying. I don't even know if I'm making any sense today. One thing I know for certain though is this: whoever invented that saying "Live every day as if it were your last" obviously didn't have any idea what that is like.

A Normal Day

Another relatively uneventful day ... which isn't to say that it was boring! Only that it didn't involve hospitals. Although we were in the hospital last night. Only for a few hours though. Thankfully, his EKG and blood work were normal so he didn't have to stay. But he isn't doing well, at all. He is so exhausted, not really bouncing back from this latest episode at all. But it's hard to say, with him. I have often thought he was REALLY sick, only to have him turn around suddenly and get his strength back. Of course, it works the other way, too. He'll seem perfectly fine and then suddenly crump. So who knows what's ahead tomorrow? or next week? or next month? Clearly, nobody does!

I talked to Dr. Warren today about my concern for the kids. Kaitlyn seems to be okay. She just puts on the blinders and gets really busy when things are stressful at home. (I'm not saying that this is "healthy," only that it seems to "work"--for now.) Brendan shows signs of stress when things get intense, but he's mostly all right, too. But Alex seems to be struggling more and more. He is getting more and more rigid about following rules (both himself and others), about telling me exactly what he's doing every time he does something (like change to a different web page or ... anything!). It's like he needs constant affirmation that what he's doing is okay. And he bursts into tears if someone looks at him sideways. He gives me a hard time at home sometimes, but he has always been "good" at school and church. But this week he threw a fit because he had left his Bible in the van, and I, being late as usual, didn't have time to go back and get it. He was banging on the wall and being a royal pain in the bootie. He DID come back and apologize, I must say, so there's that. He has SUCH a big heart, but things are just getting to be too much for him. And the hormones haven't even kicked in yet! What's he going to be like in a couple of years? Well, I can't think about that too much right now. One day at a time. That's enough, these days! Plenty. But Dr. Warren says that I should get him (and maybe even Kaitlyn) in to see a therapist of their own. I think that wouldn't be such a bad idea.

Checking In

Hey, y'all. Just wanted to let everyone know that things are going okay here. Jason walked in the front door today as the boys were tormenting their sister with the pet rat we are watching for the weekend. Kate was shrieking, and Bren was laughing, and Jason said, "Well, I see everything's just about normal here!" Yep. Nice and chaotic!

Mark is doing all right, pain-wise. He's just so exhausted, though, and if he walks around, his chest starts to hurt so he's been spending a LOT of time asleep and most of the rest of the time in his (very comfortable) desk chair. But he seems okay. And the extra fluid does seem to be clearing itself out, so ... here's hoping we may get a few days to be just an ordinary family.

Yes, I'm Still Here.

I've been a bad girl. I didn't quite realize how long it had been since I posted in here until two friends wrote me privately last night. "I haven't heard from you, and I checked your blog, and ... are you alright?" Yes, I'm okay. It's been a rough week. (Scratch that. It's been a rough two and a half weeks.) And I feel like I've kind of been in a state of suspended animation. So ... to recap our week:

Mark was at OHSU until midafternoon yesterday. On Tuesday, they did a phlebotomy. Dr. Broberg (his cardiologist) doesn't like to do those, at all, but they really didn't have much choice with Mark. His blood was too thick for his heart to pump it effectively and so he wasn't getting enough oxygen. His heart was showing signs of weakening, and ... well, quite frankly, the pain in itself was just too much. So they went ahead and drew off 500 cc's of blood, 50 at a time, every 10 minutes. They gave him an iron infusion and lots of fluids, and he did fine. But he's still exhausted. While his hematocrit went down 10 points (which is a good thing), his oxygen saturation also went down 10 points (which is NOT a good thing!). See, you and I (unless "you" happen to have a condition like Mark's) would be pretty much milk toast if our saturations dropped into the low 90s. Mark's body has adapted to his blood being in the high 70s. (It's funny to see new nurses try to fix their "broken" machines when they are first getting acquainted with Mark.) Well, yesterday his O2 saturation was 65%. Very, very low. Hopefully, his body will do what it needs to do to bounce back and start carrying more oxygen, but for now, he's pretty worn out. However, the pain isn't nearly as severe, which is definitely something for which to be grateful.

He has a lot of fluid built up in his system right now. His feet are a little swollen, and his belly is quite swollen. His body may (or may not) take care of it on its own. In the fall, when he was in the hospital and received a lot of fluid, he wasn't able to use/expel it on his own. The lower half of his body swelled up monstrously, and he had to go back into the hospital for a couple of days so that they could put him on medication and this sort of leg compressor do-dad to help his body get rid of the fluid. I'm half expecting that we will be doing that again before the end of the weekend. Of course, I hope not! But I wouldn't be at all surprised. Better to be prepared, eh? So, we'll see. I'll try to do better about keeping all of y'all informed!

Beyond Tired

Kate got the bug Saturday night. She was at Shawne's house, with several friends. I heard what sounded like someone running about 3:30 a.m. I sat up and called to Brendan, but it wasn't him. It was her, knocking on the door! She had started throwing up, and Pieper (her friend's mom) had to bring her home. Thankfully, her bout with this bug was quite short lived. By evening, she was bored and begging me to play a game with her.

I was SO tired and crabby. (As Kaitlyn said, once, "Dang! Mom is in a MOOD!") But Dad came and got the boys yesterday afternoon to take them swimming, freeing me up to work on my poetry class for two solid hours and thus restoring my sanity. (Thank you, Dad!)

I fell asleep in the car today. I had driven Mark in to McMinnville to do some work at the church. Then I drove to Newberg to pay the rent, etc. Then I drove back to Mac to pick up Mark. I had to pull into the movie theater parking lot though. I just couldn't keep my eyes open! Bren was asleep in his carseat, and I curled up in the driver's seat and slept for nearly a half hour. As Brendan told his sister later, "We went to the movies to have a nap!"

Tonight ... Mark is back at OHSU. I took him in about 7:30 this evening. He was having pain in his chest and down his arm, just like before. His EKG was somewhat abnormal, so about 10:30, they decided to transfer him. He's stable though and seems in decent spirits. I will (hopefully) know more tomorrow.

And So It Goes

Brendan was much better today. He got to go to school and to his little graduation this evening. But then Mark's pain kicked in. Brendan just couldn't handle being left alone. I have left him, sobbing, before, but I knew it wasn't going to happen tonight--at least not with just Kaitlyn to take care of him. So I took him with me. I brought pillows and a blanket, and he mostly just slept on the low, wide windowsill next to the table where I sat working on my poetry class.

We got home about 1:00 to find Alex asleep in the living room--and three separate puddles of vomit around both the upstairs and the downstairs. All I can say is ... ugh.