Journal Entry, July 21, 2004
I'm on bed. I'm not in bed, snuggled up like a cozy little Salvation-colored paisly, and I'm in no way relaxing...no, I'm perched atop my bed warily, a bundle of nerves. No, that's not right--more like I'm on high alert. I'm always on high alert, ready to F-L-I-N-G back my covers in a flurry and zip with all haste to the phone, the door, to start the dishwasher so the bottles will be done by the time Niko wakes up, or whatever.
So Niko really only had the IV for four hours, and then we were out of there. The dialysis floor is kind of an IV catch-all, and that's why we were there. The little boy getting actual dialysis next to us vomited over and over and over-- what a change in lifestyle, if Niko really did have Chronic Renal Insufficiency. How blessed we are that our wonderful little boy is A-OK!!!
Saturday, May 21, 2005
Roasting on a Spit
Journal Entry, July 19, 2004
This week has been all kinds of busy! Something going on every single day, all day appointments, etc. etc. We took Niko to get his upper GI done, and it was pretty traumatic. They actually strapped him to a board with his arms strapped over his head, so they could get an unobstructed picture, and force fed him Barium. (I thought, "There goes all of his eating therapy!" and the sheer prissiness of that thought cheered me up some.) Then they slid the board into the machine and had to rotate him around to get shots of everything...it was completely like he was cooking on a spit. Poor kid. He came completely undone, which surprised none of us. He had a fever a couple of days ago, and lots of vomiting. But his calcium's up again and he's going in for it tomorrow. I guess they'll give it to him a different way, so it only takes one day, not two. I'm supposed to take him to the dialysis floor. I'm a little nervous, but most things don't seem to turn out quite as badly as I fear, so we'll see.
This week has been all kinds of busy! Something going on every single day, all day appointments, etc. etc. We took Niko to get his upper GI done, and it was pretty traumatic. They actually strapped him to a board with his arms strapped over his head, so they could get an unobstructed picture, and force fed him Barium. (I thought, "There goes all of his eating therapy!" and the sheer prissiness of that thought cheered me up some.) Then they slid the board into the machine and had to rotate him around to get shots of everything...it was completely like he was cooking on a spit. Poor kid. He came completely undone, which surprised none of us. He had a fever a couple of days ago, and lots of vomiting. But his calcium's up again and he's going in for it tomorrow. I guess they'll give it to him a different way, so it only takes one day, not two. I'm supposed to take him to the dialysis floor. I'm a little nervous, but most things don't seem to turn out quite as badly as I fear, so we'll see.
The Piano, Part II
Journal Entry, June 30, 2004
We had six guys show up to move our piano, and it was nestled in our living room about 15 minutes after they pulled it off of the truck. Wonderful! It's scratched and out of tune, but I love it dearly, and have already logged in hours of playing time. Niko seems to love it. It's fantastic!
I was thinking about how my life never seems like it accomplishes much. Everything I do needs to be redone, over and over. Wash the dishes AGAIN, clean the counter AGAIN, give Niko his medicine AGAIN. I need to get a project that actually gets accomplished and stays that way! Draw a line through it and cavort around! Done Done Done, ha ha ha! See, I haven't actually accomplished anything yet, but the excitement is infectious!
We had six guys show up to move our piano, and it was nestled in our living room about 15 minutes after they pulled it off of the truck. Wonderful! It's scratched and out of tune, but I love it dearly, and have already logged in hours of playing time. Niko seems to love it. It's fantastic!
I was thinking about how my life never seems like it accomplishes much. Everything I do needs to be redone, over and over. Wash the dishes AGAIN, clean the counter AGAIN, give Niko his medicine AGAIN. I need to get a project that actually gets accomplished and stays that way! Draw a line through it and cavort around! Done Done Done, ha ha ha! See, I haven't actually accomplished anything yet, but the excitement is infectious!
The Piano
Journal Entry, June 22, 2004
Today was a great day, a whirlwind of doctors, friends, and Enrichment, which went well, by the way. But the best part...we bought a piano! $150, a complete steal. I just knew that if I didn't jump at the chance, I'd really regret it. Imagine, a piano of our very own!
Today was a great day, a whirlwind of doctors, friends, and Enrichment, which went well, by the way. But the best part...we bought a piano! $150, a complete steal. I just knew that if I didn't jump at the chance, I'd really regret it. Imagine, a piano of our very own!
Laughter
Journal Entry, June 21, 2004
Tomorrow our Enrichment is on Journaling, and guess who gets to teach a small segment on it? I'm excited. My focus is going to be on writing for yourself. How it's a free place to say whatever you want, no rules of etiquette apply. We're covering notebooks and doing some writing exercises. I can hardly wait, actually. I use writing to process and find peace. By going off on a writing tangent, I see what I'm really thinking, and allow myself to explore those thoughts. I remember hearing once that writer's write to find out what their current obsessions are, and I believe it.
Meanwhile, it's still very hot and we're all suffering. Marilyn and I took Niko with us on our walk yesterday, when it was finally cooler outside than it was in our house. He was the pantless wonder, and all of us were very jealous.
The greatest thing, these last two days, is that Niko has been cracking up. First on my lap in church playing with a piece of curled ribbon. "Huh huh HUH," He booms. It's shockingly hardy. For maybe five minutes, he just laughed and laughed, and everybody smiled and looked at him. We were laughing, too. Tonight Luke shook his little truck with the marbles inside of it, and we heard that "Heh Ha Huh!" that makes my head whip in his direction, searching for the cause of his distress. "I hope he doesn't always laugh like this!" Luke says, and we're giggling again, shaking that truck even harder. Utterly delightful.
Tomorrow Niko sees Gastroenderolgy for the first time, to hopefully get a clue about his vomiting. He's taking Zantac right now, which seems to be helping. (Also Propranolol, Nieflex and an ear infection antibiotic, but who's counting?) What a good, sweet, beautiful, boy. I'm, so proud of him.
Tomorrow our Enrichment is on Journaling, and guess who gets to teach a small segment on it? I'm excited. My focus is going to be on writing for yourself. How it's a free place to say whatever you want, no rules of etiquette apply. We're covering notebooks and doing some writing exercises. I can hardly wait, actually. I use writing to process and find peace. By going off on a writing tangent, I see what I'm really thinking, and allow myself to explore those thoughts. I remember hearing once that writer's write to find out what their current obsessions are, and I believe it.
Meanwhile, it's still very hot and we're all suffering. Marilyn and I took Niko with us on our walk yesterday, when it was finally cooler outside than it was in our house. He was the pantless wonder, and all of us were very jealous.
The greatest thing, these last two days, is that Niko has been cracking up. First on my lap in church playing with a piece of curled ribbon. "Huh huh HUH," He booms. It's shockingly hardy. For maybe five minutes, he just laughed and laughed, and everybody smiled and looked at him. We were laughing, too. Tonight Luke shook his little truck with the marbles inside of it, and we heard that "Heh Ha Huh!" that makes my head whip in his direction, searching for the cause of his distress. "I hope he doesn't always laugh like this!" Luke says, and we're giggling again, shaking that truck even harder. Utterly delightful.
Tomorrow Niko sees Gastroenderolgy for the first time, to hopefully get a clue about his vomiting. He's taking Zantac right now, which seems to be helping. (Also Propranolol, Nieflex and an ear infection antibiotic, but who's counting?) What a good, sweet, beautiful, boy. I'm, so proud of him.
Graduation
Journal Entry, June 13, 2004
Last night my sweet Luke walked for his graduation. Robe, hat, and beautiful velvet hood signifying MBA! I'm so proud of him, and he's worked so hard. Both of our families are up, and how great is that? We've spent a lot of time walking and a lot of time eating. Oh, and I went back to blonde and feel like my old self again.
Last night my sweet Luke walked for his graduation. Robe, hat, and beautiful velvet hood signifying MBA! I'm so proud of him, and he's worked so hard. Both of our families are up, and how great is that? We've spent a lot of time walking and a lot of time eating. Oh, and I went back to blonde and feel like my old self again.
Thursday, May 19, 2005
Sounds of the City
Journal Entry, May 29, 2004
I always thought that my life had this huge, great purpose. I'm hoping that is still the case, that it isn't all refolding laundry and sweeping chocolate chips off the floor. I just gave Niko his Zantac and a bottle. I'm trained to wake up at every sound now, and the city has a lot of sounds! The flashing of police lights woke me the other night, and I watched the whole ticket-giving exchange through the dark blinds like some voyeur. All of this life going on around me, these men twenty feet away away that have no idea that somebody is up here, that there's drama that unfolds in this space. Sometimes I look at the cars go by and I'm overwhelmed by the fact that inside every car is a life, or a bunch of lives, and that every life goes on and on and on. And all I'll ever see of that life is this five seconds of somebody in a car. That's all they'll ever mean to me, when in fact, that's not who they are at all. If the driver or the cop were to look up and see me peering out, they'd just chalk it up to some nosy, crazy woman in the middle of the night, and that wouldn't be right, either.
I always thought that my life had this huge, great purpose. I'm hoping that is still the case, that it isn't all refolding laundry and sweeping chocolate chips off the floor. I just gave Niko his Zantac and a bottle. I'm trained to wake up at every sound now, and the city has a lot of sounds! The flashing of police lights woke me the other night, and I watched the whole ticket-giving exchange through the dark blinds like some voyeur. All of this life going on around me, these men twenty feet away away that have no idea that somebody is up here, that there's drama that unfolds in this space. Sometimes I look at the cars go by and I'm overwhelmed by the fact that inside every car is a life, or a bunch of lives, and that every life goes on and on and on. And all I'll ever see of that life is this five seconds of somebody in a car. That's all they'll ever mean to me, when in fact, that's not who they are at all. If the driver or the cop were to look up and see me peering out, they'd just chalk it up to some nosy, crazy woman in the middle of the night, and that wouldn't be right, either.
Shame
Journal Entry, May 26, 2004
Niko is coughing in the other room. I expect him to sleep soon. I have a new love! On Mondays and Wednesdays I have kickboxing, and I love it as much, if not more, than I thought I would! It's definitely challenging, and takes me beyond the point of exhaustion, but I feel strong and powerful, and love the time to myself. I focus on kicking straight, or on solid punches, not on how many doses of medication I've given that day, or what tomorrow's blood tests will say. The war in Iraq doesn't even cross my mind. I don't even think about the new lump in my breast, to the side of my old pink scar from the last one. I noticed it maybe three months ago, but of course we don't have any health insurance, so I've been putting it off. Luke thinks I should go in anyway, and he's probably right. I just keep thinking that one day, POOF! there will be a magical, wonderful job with great insurance for the whole family. I told Luke tonight, "I know you're trying to find a job, but I'm waiting to go to the hospital, so maybe you could try a little bit harder?" and I started to tear up and covered my face with my hands until I was composed again. And Luke-- oh, his face. He looked positively stricken, and was tearing up as well, and I thought, "Great job, way to pile on the pressure. Let's see if we can break him now, why don't we." I am deeply shamed. Sometimes I'm very unimpressed with myself.
Niko is coughing in the other room. I expect him to sleep soon. I have a new love! On Mondays and Wednesdays I have kickboxing, and I love it as much, if not more, than I thought I would! It's definitely challenging, and takes me beyond the point of exhaustion, but I feel strong and powerful, and love the time to myself. I focus on kicking straight, or on solid punches, not on how many doses of medication I've given that day, or what tomorrow's blood tests will say. The war in Iraq doesn't even cross my mind. I don't even think about the new lump in my breast, to the side of my old pink scar from the last one. I noticed it maybe three months ago, but of course we don't have any health insurance, so I've been putting it off. Luke thinks I should go in anyway, and he's probably right. I just keep thinking that one day, POOF! there will be a magical, wonderful job with great insurance for the whole family. I told Luke tonight, "I know you're trying to find a job, but I'm waiting to go to the hospital, so maybe you could try a little bit harder?" and I started to tear up and covered my face with my hands until I was composed again. And Luke-- oh, his face. He looked positively stricken, and was tearing up as well, and I thought, "Great job, way to pile on the pressure. Let's see if we can break him now, why don't we." I am deeply shamed. Sometimes I'm very unimpressed with myself.
Tuesday, May 03, 2005
Miracle
Journal Entry May 20, 2004
I took Niko to nephrology and held him out in my arms like a sacrifice. "Forget everything we were going to talk about," I said. "Look at him! He's lost a pound since last week! 18 pounds! Something is very wrong!" My concern was the constant throwing up and his refusal to take any food whatsoever. Another switch to the formula, a much more concentrated amount, and somehow he's doing better.
"Somehow" includes a lot of prayers...that were answered. We were scheduled to go into Admitting today for another two day hospitalization for the IV, and we did some labs first. His creatnine had dropped to 1.7. His calcium had dropped to .9. The doctor let us go. "Enjoy the sunshine," she said, and smiled, and Niko and I skipped out of the hospital. Considering his condition on Tuesday, truly a miracle.
I took Niko to nephrology and held him out in my arms like a sacrifice. "Forget everything we were going to talk about," I said. "Look at him! He's lost a pound since last week! 18 pounds! Something is very wrong!" My concern was the constant throwing up and his refusal to take any food whatsoever. Another switch to the formula, a much more concentrated amount, and somehow he's doing better.
"Somehow" includes a lot of prayers...that were answered. We were scheduled to go into Admitting today for another two day hospitalization for the IV, and we did some labs first. His creatnine had dropped to 1.7. His calcium had dropped to .9. The doctor let us go. "Enjoy the sunshine," she said, and smiled, and Niko and I skipped out of the hospital. Considering his condition on Tuesday, truly a miracle.
A Painful Rock Bottom
Journal Entry May 18, 2004
Niko looks awful today. Thinning out, this skinny neck with the blue jugular pulsing-- He's pale, his eyes are red, his lips colorless. I genuinely don't think he smiled all day. Clingy, fragile, lethargic. He vomited twice, and it hurts him now, I can tell. Not like his usual daily vomiting. I can see his veins running under the skin of his face. He didn't want to play, just cuddle. Bless these doctors tomorrow with inspiration-- I will do anything to fix this.
Niko looks awful today. Thinning out, this skinny neck with the blue jugular pulsing-- He's pale, his eyes are red, his lips colorless. I genuinely don't think he smiled all day. Clingy, fragile, lethargic. He vomited twice, and it hurts him now, I can tell. Not like his usual daily vomiting. I can see his veins running under the skin of his face. He didn't want to play, just cuddle. Bless these doctors tomorrow with inspiration-- I will do anything to fix this.
Pulling It Together, Somehow
Journal Entry May 17, 2005
I got up to give Niko his bottle, and thought I'd write you. So many feelings, Self. Today I feel pulled together, which is heaven considering the disjointed feeling of my life lately. I'm calling Luke's mom today and asking her to come-- just having someone to help feed us and keep the counter clean-- heck, to take care of US as we take care of Niko-- the thought alone strengthens me. Last night I looked at today's calendar and my mouth gaped open. Nothing scheduled except for kickboxing! I hardly belive it! Of course, who knows what could come up, but maybe...nothing.
So on Saturday I went to the Stake Humanitarian event. I helped organize and prepare for it a bit. The Stake Relief Society got together and made knit and crochet hats for babies, sewed and tied quilts, and made dolls in hospital gowns to for the Children's Hospital. (The dolls are staying local. The rest is going world wide.) I tied quilts and stuffed dolls (I wonder how many of those I'll see around the hospital) and it felt great to climb out of my own sphere for once and leave myself behind for a few hours. Now I want to learn to sew, and re-learn to crochet. Will I feel more fulfilled, do you think?
Marilyn has been extra wonderful. Calling at just the right time, basically checking up every day, inviting us over to dinner on Mother's Day. We went for one of our famous weekly walks last night. I vented for maybe a mile and a half, and she listened, adding insightful comments and support, and then we both started laughing at something (typical) and it was comfortable and wonderful and we were truly inspired to become friends.
The news is filled with ugliness-- the abuse of prisoners, which sickens me, and the beheading of Nick Berg in possible retaliation of that abuse. Apparently you can go online and watch the beheading, and some DJ's were fired for playing audio of it on the air and making jokes. The depravity of the world astounds me. We had an interesting discussion with our friends about being informed of world events, but not being stained by them. Possible? How? I fear for my children. But then again, I think every generation does.
On Tuesday we have the nephrology clinic. We get to ask questions. I'm starting a list. Does he really have Chronic Renal insufficiency? It sounds like the goal is to keep the kidneys functioning as long as possible. What then? A transplant? Will that take care of the problem? When would that take place, if necessary? Will we raise our future children with the knowledge that one day they might get to give big brother Nikolai a kidney? What about dialysis? What's his life expectancy? John called yesterday and said, "What are your feelings? Do you think he'll make it?" I was totally taken back. I said, "John, yes, I'm sure he'll make it!" The doctors never mentioned any other possibility. In all of his blessings Luke says, "You'll grow up to do this and be this..." and I cling to that simple phrase...GROW UP! But his words make me wonder...IS THIS A POSSIBILITY I SHOULD BE PREPARED FOR?! Sometimes I get these brief flashes of clarity and insight, from a larger perspective. If we have to move from this place and from this wonderful hospital, we will survive. Yesterday I thought, I believe in this gospel. If something were to happen to my baby, I know he'd go to God. I truly believe that. So deep in my heart, I know that the worse case scenario has joy in it as well, yet the natural man persists, and I cry, as I do now, and my stomach twists, and I remember being on hands and knees and vomiting repeatedly last week, and knowing that would only be the beginning of the reaction I would feel if we lost our son.
As I said, so many feelings. Luke has been wonderful. We've somehow learned to pull together instead of apart, as we were. I think a lot of it has to do with my verbal appreciation for him. It'd not enough for me to know it....he needs to hear it, too.
I got up to give Niko his bottle, and thought I'd write you. So many feelings, Self. Today I feel pulled together, which is heaven considering the disjointed feeling of my life lately. I'm calling Luke's mom today and asking her to come-- just having someone to help feed us and keep the counter clean-- heck, to take care of US as we take care of Niko-- the thought alone strengthens me. Last night I looked at today's calendar and my mouth gaped open. Nothing scheduled except for kickboxing! I hardly belive it! Of course, who knows what could come up, but maybe...nothing.
So on Saturday I went to the Stake Humanitarian event. I helped organize and prepare for it a bit. The Stake Relief Society got together and made knit and crochet hats for babies, sewed and tied quilts, and made dolls in hospital gowns to for the Children's Hospital. (The dolls are staying local. The rest is going world wide.) I tied quilts and stuffed dolls (I wonder how many of those I'll see around the hospital) and it felt great to climb out of my own sphere for once and leave myself behind for a few hours. Now I want to learn to sew, and re-learn to crochet. Will I feel more fulfilled, do you think?
Marilyn has been extra wonderful. Calling at just the right time, basically checking up every day, inviting us over to dinner on Mother's Day. We went for one of our famous weekly walks last night. I vented for maybe a mile and a half, and she listened, adding insightful comments and support, and then we both started laughing at something (typical) and it was comfortable and wonderful and we were truly inspired to become friends.
The news is filled with ugliness-- the abuse of prisoners, which sickens me, and the beheading of Nick Berg in possible retaliation of that abuse. Apparently you can go online and watch the beheading, and some DJ's were fired for playing audio of it on the air and making jokes. The depravity of the world astounds me. We had an interesting discussion with our friends about being informed of world events, but not being stained by them. Possible? How? I fear for my children. But then again, I think every generation does.
On Tuesday we have the nephrology clinic. We get to ask questions. I'm starting a list. Does he really have Chronic Renal insufficiency? It sounds like the goal is to keep the kidneys functioning as long as possible. What then? A transplant? Will that take care of the problem? When would that take place, if necessary? Will we raise our future children with the knowledge that one day they might get to give big brother Nikolai a kidney? What about dialysis? What's his life expectancy? John called yesterday and said, "What are your feelings? Do you think he'll make it?" I was totally taken back. I said, "John, yes, I'm sure he'll make it!" The doctors never mentioned any other possibility. In all of his blessings Luke says, "You'll grow up to do this and be this..." and I cling to that simple phrase...GROW UP! But his words make me wonder...IS THIS A POSSIBILITY I SHOULD BE PREPARED FOR?! Sometimes I get these brief flashes of clarity and insight, from a larger perspective. If we have to move from this place and from this wonderful hospital, we will survive. Yesterday I thought, I believe in this gospel. If something were to happen to my baby, I know he'd go to God. I truly believe that. So deep in my heart, I know that the worse case scenario has joy in it as well, yet the natural man persists, and I cry, as I do now, and my stomach twists, and I remember being on hands and knees and vomiting repeatedly last week, and knowing that would only be the beginning of the reaction I would feel if we lost our son.
As I said, so many feelings. Luke has been wonderful. We've somehow learned to pull together instead of apart, as we were. I think a lot of it has to do with my verbal appreciation for him. It'd not enough for me to know it....he needs to hear it, too.
Hopeful Hospitalization
Journal Entry Friday, May 14, 2004
Yesterday I got a call from the nephrologist. They found a medication to help reduce his calcium and fuse it into his bones where it belongs. It's an IV...could I be here in two hours? Yes! I could! So we packed up and came. Yesterday he had the IV for two hours, stayed overnight (I camped out on the pull-out couch) and today he had it for four hours. The 6:00 AM blood tests said his calcium was even higher, but the doctor said it wasn't much higher, and she expected it to take a day or two to work. So now we've been here 28 hours and we're just waiting for the dietician to run us a container of Calci-lo formula to last us through the weekend. We're still trying to find someplace to supply us with this formula longterm. Otherwise we're defeating the purpose, pumping MILK into my over-calcified little boy.
I got a great letter from my aunt...it was wonderful. Mom and Dad really want to come up, and so does Luke's mom. We might take her up on it.
Yesterday I got a call from the nephrologist. They found a medication to help reduce his calcium and fuse it into his bones where it belongs. It's an IV...could I be here in two hours? Yes! I could! So we packed up and came. Yesterday he had the IV for two hours, stayed overnight (I camped out on the pull-out couch) and today he had it for four hours. The 6:00 AM blood tests said his calcium was even higher, but the doctor said it wasn't much higher, and she expected it to take a day or two to work. So now we've been here 28 hours and we're just waiting for the dietician to run us a container of Calci-lo formula to last us through the weekend. We're still trying to find someplace to supply us with this formula longterm. Otherwise we're defeating the purpose, pumping MILK into my over-calcified little boy.
I got a great letter from my aunt...it was wonderful. Mom and Dad really want to come up, and so does Luke's mom. We might take her up on it.
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