Black or white
In the past few days Liam is either deeply asleep, or moaning in her sleep, or in pain when she's awake. She is not awake and with no pain and happy. She's really trying hard to climb out of the hole, but keep falling back in. Bummer.
Yesterday she had a pretty good morning, but when she was hooked up to the dialysis machine at 11, things changed drastically. Her blood pressure (which is often too high) took a serious dive. Her temperature dropped to 94-something. For a while there was the thought of sending her to PICU (the serious ICU). Meanwhile they gave her more fluids and she started bouncing back. This is an important point: "gave her more fluids". Usually in dialysis they do two things: clean her blood, and remove fluids (since, once again, Liam's natural drainage and waste removing systems are not working right). And here they are ADDING fluids. So we didn't know what to expect until the next dialysis on Monday.
What they discovered is that some bacteria grew in the lines servicing the veins/arteries. That caused an infection - one of few. She received some big caliber antibiotics, and that seemed to helped.
And a bunch of tests were done: took blood and sent to the lab, shunt series (X-rays), CT-scan. Don't know the lab results, but the rest came negative.
It's Saturday night as I'm writing these words. Liam has been mostly sleeping the past 36 hours. Every now and then she complains. They give her more "stuff" and she goes back to sleep. Not fun, but at least she's not suffering.
The rest of this post is from earlier in the week. So time references are relative to when the pieces were written. In other words, there's no telling. You're screwed.
A BIG Laughter
I arrived in the afternoon. Liam's in dialysis. I sit next to her. She's so-so. In between moaning. Shall we read a book together? Frog and Toad? Without waiting for an answer I start reading, hoping that Liam would complete my sentences.
Toad: DRAT, this house is a...
Liam: mess
Frog: Your pants and jacket are lying on the...
Liam: floor
These are not words. These are hardly whispers.
But then I see it. It's not something big. For a matter of fact, it's very very small. Almost unnoticeable. Ever so slightly the corners of her mouth are moving. You can't call it a smile. But I know: It IS a smile. Her body is too weak for the full movement, but her brain is laughing hard. And that is plenty for me.
Blue what?
The Ghana-Germany game is on TV. A pretty good game, but it's difficult to follow. We're at dialysis. The machines and monitors are all beeping and screaming and buzzing (those who complain about the vuvuzelas should come for an afternoon on the 6th floor); the techs are running around busy, busy, busy; and Liam snores and then moans. LIAM!!! Either wake up and watch the game or sleep quietly. But don't disturb now. This game is too important. I place a call to the nurse to come with more drugs. We have another full half in front of us. Better be safe than sorry. During all this time I'm also "working". Well, at least I'm online with the email and messenger open. But these are terrible conditions to watch a game. For the first game of the day I placed my mobile office at the neighborhood bar, where I watched the game with a group of nice people, most of whom I met for the first time, and all of which are probably my best friends now - if to judge by the number of hugs I got after the US scored a goal. But while I'm blah-blah-blah'ing about the game, Liam starts moaning again. Only an hour went by. Two more hours of dialysis.
Oh hey, here comes Lucy in the sky with junk food. Again, she brought no diamonds (picture yourself...). Lucy is the all powerful head of FOCUS. Years ago I appointed her to be my mom, since I need my mommy and Rachel keeps ignoring me. Lucy never comes empty handed. Always some piece of something. But I love her nevertheless. This time Lucy surprises me: she brings a 6-pack of Blue Moon. We close the curtains around Liam's bed and quietly quietly - L`CHAIM. Then the conversation flows. But moooom, it's far too dangerous. They gonna discover us. They don't even let water in, let alone beer. Oh hush and enjoy your beer, she says. It will be ok. Did I say already I love her? The conversation is great, but Lucy dear, as much as I adore kids with special needs, Ghana is about to lose to Germany. This is WAAAAAY more important.
Well, Lucy came and left. The game is over. The evil Germans won again. An hour and 27 minutes of dialysis to go. Liam received Tylenol and so far she's holding nicely. Of course, now that I put it in writing, she'll probably start complaining again. Yesterday we thought we'd go home today. But then came last night with all the pains. Everything is so fragile. 53 minutes to go. Oops, I forgot to ask Lucy if they drink beer at the FOCUS offices. Maybe I'll apply there for a job??? 51 minutes. Liam is so strange. When the instruments are beeping and screaming the most, she suddenly smiles a huge smile - and follows it immediately with a moan. 49 minutes. As soon as the game was over and Lucy gone, time stopped moving.
(Lucy indeed visited. And she is indeed my mom. We indeed had a great conversation. You didn't fall for the beer drinking at dialysis though, did you? And pssssst, mom, I really do love you, but hey, Blue Moon is not beer. This is beer.)
Frozen in time
The bed is a mess, cloths are all over the place, laundry is only half folded, the kitchen is still being cleaned, mail is still unopened. That's what the house looks like when we need to return with Liam to the hospital all of the sudden. Because it is when Liam does feel good that not only we're the least prepared (to return), but we - OMG, get ready for this - trying to live normal life. You know, cooking, paper work, interact with the neighbors, etc. Liam's still the main focus, but now a forgotten cucumber and a book and a bottle of wine are occupying spaces in between the syringes and medicines and medical hoses. And all at once a decision is made: she's not well. We must take her in. And everything in the house freezes. Like an unfinished symphony. And then it takes us at least a week to restore order. Because meanwhile Rachel and Liam are in the hospital and Meitav and I are returning late and who wants to do it? All we want is to take a shower and get ready for the next day and get in bed. And that's how it happens time and time again.
I decided to be fat
I finally figured out how to lose weight. It's not about eating right and exercising. Nope. People have tried these methods for years - unsuccessfully. No, my method is based on exactly that: failure. Let me explain.
These days are way too busy for me - there's work, spending time at the hospital, Meitav is on summer vacation, and there's the world cup. There is no time to exercise. So I decided to be fat. You know how people always try to be rich? And how we try so hard to achieve world peace? Or on the contrary, how we try to kill Al-Qaeda? All unsuccessfully. Most of us will remain average for the rest of our life; world peace is an illusion; al-qaeda cannot be killed with guns. Well now, what if I try to be fat? What are my chances to succeed? Based on this theory, not very high. BINGO. I'm a genius!!! Bring on the haagen dazs, baby.
--------
It's 10:02 on a Saturday night. Liam is snoring, so I better floss, brush, and hit the hay. There's no telling what the night will be like. Plus, I'm on call tonight. Buenas noches (Argentina-Mexico tomorrow).
Saturday, June 26, 2010
Monday, June 21, 2010
Vuvuzela, etc.
The current hospitalization started a bit over 2 weeks ago. In addition to the pain syndrome we explained several times before, there's more stuff going on. Liam has a pretty weak immune system by now. Every cath`ing (done 4-5-6 times a day) can potentially bring more infections. And infections indeed she has. In order to fight those infections, she gets antibiotics. But there are at least two problems:
1. The bad bacteria gets used to the antibiotics, so these have to be adjusted. It's quite a complex bio-game.
2. Many of the meds Liam gets have this or that side effect on the stomach. Many of them are recommended to consume with food. But Liam doesn't eat. Plus, her stomach is not great to begin with (see "the syndrome"). Bottom line: Even when she gets stuff to help her, it disturbs her stomach. Sort of a catch-22.
The questions is how to break out of this cycle. If anybody has an idea, you can have my lottery ticket - the one I was gonna win the $64M with.
The Graph
While Liam's body is not getting better in the last year - to put it mildly - her fighting and surviving spirit has never been stronger. A picture sometimes better than words. I'm not an economist or a mathematician, but displaying the following graph makes me look smart:
The graph is not to scale. It just presents a trend, an idea. Click on the graph to enlarge it.
As you can see, while the body line is on a general down slope, the fighting spirit is strong. Purple too (for my gay friends).
The Laundry Basket Guide of How To Deal With Them Vuvuzelas
(The credit for the title goes to my friend JT)
The Laundry Basket Guide is on vacation for the World Cup. However, we reconvened for a special emergency session to discuss the noise level.
If you don't know what a vuvuzela is, you're probably in the wrong blog.
One of the things I enjoy most about the World Cup, next to the soccer itself, is seeing all the nationalities and learning about them. I mean, everybody knows who Italy is, how pathetic England is, why it's a MUST to hate Germany (because "soccer is played 90 minutes and at the end Germany wins"), but who the hell is Uruguay? Where in the world is Paraguay? What's the difference between Slovakia and Slovenia and Serbia? I find myself going to the internet again and again to learn not about these teams, but about the countries they represent. Where is the country? What's the climate there? Where are the people from - native, settlers? What's the economy like? Etc. etc. Often, after I gain more knowledge, it makes the matches more interesting. I understand dynamics in the teams, I'm discovering new rivalries. It's fun. My geography teacher from high school, the one who saw me through the window playing soccer during his lecture, would have been very proud of me.
And by the time I learn all that stuff, the sound of the vuvuzelas is somewhere in the background. Unfortunately, all the laundry baskets are still full to the top.
The Laundry Basket Guide to Father Day
I don't know how Father Day started and I don't care to learn. Today it's just another commercial date. Just an excuse to bombard our brains with more "specials", more "deals", more meaningless "value promises". I have my family's love and appreciation every day. I don't need a special day for this and I don't want anybody telling me when to celebrate it.
But there's one thing this day IS good for: leave Abba alone and let him watch soccer and golf until he falls of his feet. And so it was. (Fortunately, I was on my ass in front of the TV from 7 AM till 9-something PM, not on my feet.)
The laundry baskets were still full after 3 soccer games and the US open.
1. The bad bacteria gets used to the antibiotics, so these have to be adjusted. It's quite a complex bio-game.
2. Many of the meds Liam gets have this or that side effect on the stomach. Many of them are recommended to consume with food. But Liam doesn't eat. Plus, her stomach is not great to begin with (see "the syndrome"). Bottom line: Even when she gets stuff to help her, it disturbs her stomach. Sort of a catch-22.
The questions is how to break out of this cycle. If anybody has an idea, you can have my lottery ticket - the one I was gonna win the $64M with.
The Graph
While Liam's body is not getting better in the last year - to put it mildly - her fighting and surviving spirit has never been stronger. A picture sometimes better than words. I'm not an economist or a mathematician, but displaying the following graph makes me look smart:
The graph is not to scale. It just presents a trend, an idea. Click on the graph to enlarge it.
As you can see, while the body line is on a general down slope, the fighting spirit is strong. Purple too (for my gay friends).
The Laundry Basket Guide of How To Deal With Them Vuvuzelas
(The credit for the title goes to my friend JT)
The Laundry Basket Guide is on vacation for the World Cup. However, we reconvened for a special emergency session to discuss the noise level.
If you don't know what a vuvuzela is, you're probably in the wrong blog.
One of the things I enjoy most about the World Cup, next to the soccer itself, is seeing all the nationalities and learning about them. I mean, everybody knows who Italy is, how pathetic England is, why it's a MUST to hate Germany (because "soccer is played 90 minutes and at the end Germany wins"), but who the hell is Uruguay? Where in the world is Paraguay? What's the difference between Slovakia and Slovenia and Serbia? I find myself going to the internet again and again to learn not about these teams, but about the countries they represent. Where is the country? What's the climate there? Where are the people from - native, settlers? What's the economy like? Etc. etc. Often, after I gain more knowledge, it makes the matches more interesting. I understand dynamics in the teams, I'm discovering new rivalries. It's fun. My geography teacher from high school, the one who saw me through the window playing soccer during his lecture, would have been very proud of me.
And by the time I learn all that stuff, the sound of the vuvuzelas is somewhere in the background. Unfortunately, all the laundry baskets are still full to the top.
The Laundry Basket Guide to Father Day
I don't know how Father Day started and I don't care to learn. Today it's just another commercial date. Just an excuse to bombard our brains with more "specials", more "deals", more meaningless "value promises". I have my family's love and appreciation every day. I don't need a special day for this and I don't want anybody telling me when to celebrate it.
But there's one thing this day IS good for: leave Abba alone and let him watch soccer and golf until he falls of his feet. And so it was. (Fortunately, I was on my ass in front of the TV from 7 AM till 9-something PM, not on my feet.)
The laundry baskets were still full after 3 soccer games and the US open.
Friday, June 18, 2010
High Everything
We got into the hospital what, 12 days ago? For most of this time Liam was sleeping. They gave her a new drug - Neurontin (I think, eh?). Its purpose, as I understand it, is to treat neuropathic pain. In plain English it's a type of pain that....nah, lets not go there. The readers are welcome to find out on their own. The US Open is on TV and Mickelson is on the Tee. I'm not in the biz of understanding medical terms at such critical times, let alone explaining them. But I will say this: the new medication is given to treat pain. It was given to begin with in too high of a doze - now we know it. The Drs played with the dosage for the past two weeks, but the princess continued to sleep (ironically in perfect timing for those who're interested to follow the World Cup on the hospital room TV).
Anyway, she slept and slept and we got worried again. In addition, she had bad smell coming out of her mouth - no matter how well we (I mean them, I mean somebody) had cleaned it. And she was coughing thick mucus. Eventually, 2-3 days ago a blood test showed sinus infection. WHEW, that was a relief, believe it or not. Since then Liam shows signs of feeling a bit better.
Usually when Liam's restful (asleep), her heart rate is sort of normal - 70-80. But in the last two weeks it's no less than 120 and at times climbs to the 170s. Scary. It's still high. Her blood pressure was high too, but now I think it's ok.
In the last 12 hours there was some serious miscommunication in the hospital, the result of which they STOPPED giving her Kepra, the seizure medication. Sure enough, today toward the end of dialysis she had several small seizures. As I'm writing these words the situation was restored to where it should be. It's just scary how things like that take place. The scary part is that I can't say a bad word about anybody from her medical staff. We learned to love and respect all the Drs and nurses and experts - and learned to work together as a team. And things like that still happen. Scary, did I say that already?
World Cup Addiction
I love football (eh, soccer) and I love the WC. But I'll be happy when it's all over and done with. You see, I'm trying to watch all 3 games every day, work as usual, spend time in the hospital, do some exercise, and be a dad for Meitav. This is waaaaay too much. And I'm watching everywhere: on the computer, on Univision in Spanish (don't have cable), in bars, at a friend's house and of course, from the hospital (we have a 7:30 game tomorrow morning, Liam. Get a good night sleep). Lucky for me there's Friday night and I'm "locked" in the hospital room with Liam (and the US Open).
The Laundry Basket Guide of how NOT to Write Laundry Basket Guides
Alright, a confession: For a while now I was trying to write a Laundry Basket Guide to Relationships with the In-laws. I tried to make it sophisticated and funny and, of course, tied to laundry baskets. But the truth is that I failed. So I need to get away from sophistication and stay simple. Here goes:
My in-laws, Burt and Doreen Wittenberg, known to the intown community as Poppy and Savta (grandma), are so helpful, I don't even know where to begin from. They sit with Liam in the hospital, in her room, during dialysis, etc. This gives Rachel the breaks she needs. They help drive Meitav to places. They bring meals. They know the medical staff. And I could go on and on and on. And they do it all in good spirit - even when the situation is difficult. They keep everything positive. These are just few of the things they help with.
And when they come visit us in the house, there's always laundry for them to fold. There, I couldn't help it and tried to be funny again. Some people never learn. Pathetic.
Keeping The Priorities Straight
When you're really tired - because you watched 3 football (eh, soccer) games already, but there's still golf on TV, it's ok to put Liam in her wheelchair. She needs the change in position, it's good for the blood flow, it's good for the circulation, it's good for the....hey Rachel, where's the clicker???
Anyway, she slept and slept and we got worried again. In addition, she had bad smell coming out of her mouth - no matter how well we (I mean them, I mean somebody) had cleaned it. And she was coughing thick mucus. Eventually, 2-3 days ago a blood test showed sinus infection. WHEW, that was a relief, believe it or not. Since then Liam shows signs of feeling a bit better.
Usually when Liam's restful (asleep), her heart rate is sort of normal - 70-80. But in the last two weeks it's no less than 120 and at times climbs to the 170s. Scary. It's still high. Her blood pressure was high too, but now I think it's ok.
In the last 12 hours there was some serious miscommunication in the hospital, the result of which they STOPPED giving her Kepra, the seizure medication. Sure enough, today toward the end of dialysis she had several small seizures. As I'm writing these words the situation was restored to where it should be. It's just scary how things like that take place. The scary part is that I can't say a bad word about anybody from her medical staff. We learned to love and respect all the Drs and nurses and experts - and learned to work together as a team. And things like that still happen. Scary, did I say that already?
World Cup Addiction
I love football (eh, soccer) and I love the WC. But I'll be happy when it's all over and done with. You see, I'm trying to watch all 3 games every day, work as usual, spend time in the hospital, do some exercise, and be a dad for Meitav. This is waaaaay too much. And I'm watching everywhere: on the computer, on Univision in Spanish (don't have cable), in bars, at a friend's house and of course, from the hospital (we have a 7:30 game tomorrow morning, Liam. Get a good night sleep). Lucky for me there's Friday night and I'm "locked" in the hospital room with Liam (and the US Open).
The Laundry Basket Guide of how NOT to Write Laundry Basket Guides
Alright, a confession: For a while now I was trying to write a Laundry Basket Guide to Relationships with the In-laws. I tried to make it sophisticated and funny and, of course, tied to laundry baskets. But the truth is that I failed. So I need to get away from sophistication and stay simple. Here goes:
My in-laws, Burt and Doreen Wittenberg, known to the intown community as Poppy and Savta (grandma), are so helpful, I don't even know where to begin from. They sit with Liam in the hospital, in her room, during dialysis, etc. This gives Rachel the breaks she needs. They help drive Meitav to places. They bring meals. They know the medical staff. And I could go on and on and on. And they do it all in good spirit - even when the situation is difficult. They keep everything positive. These are just few of the things they help with.
And when they come visit us in the house, there's always laundry for them to fold. There, I couldn't help it and tried to be funny again. Some people never learn. Pathetic.
Keeping The Priorities Straight
When you're really tired - because you watched 3 football (eh, soccer) games already, but there's still golf on TV, it's ok to put Liam in her wheelchair. She needs the change in position, it's good for the blood flow, it's good for the circulation, it's good for the....hey Rachel, where's the clicker???
Sunday, June 13, 2010
What, it's the World Cup? Who knew?
I'm looking at the large black cleaning lady who just entered the room. The look in her eyes is defeated, indifferent. An I-don't-care look. She cleans the sink with her rag. Then the trash bin. Oops, is she using the same rag to clean sinks and surfaces AND trash bins? Did she clean our sink with the same rag she used on trash bins in earlier rooms she visited? And now we should feel clean???
She moves to the bathroom. It takes her a total of 5 seconds to come out. Scary. Then she mops the floor. I don't know if there's a disinfecting agent on her mop or if this is just wetting the floor. In either case, she's doing it as if she's doing somebody a favor. For her large size, she moves pretty nimble the way she "flies" around the fixtures in the room. No, don't get up, you're fine. As she's heading out I'm noticing a bunch of "shmootz" under and around and under Liam's bed. And I'm noticing that she did not change her gloves as she moved to the next room. Spreading germs is what she does, not cleaning.
It's probably not her fault as she might not know better. I'm just wondering if such work is being inspected - or, is it really our job to protect Liam (and ourselves) even within the walls of the hospital?
If there's one reason I'm glad the cleaning lady is doing her job poorly and too fast is that I'm watching the Ghana-Serbia game and she keeps getting in the way. I'm trying to analyze it for Liam, but she seems uninterested. She's sleeping through it. For a matter of fact, she's sleeping through it all in the last 4-5 days. Yesterday her blood pressure, which is often too high, was too low. And she had fever. I don't think it's related to the England-US game. I didn't watch it with her. Then they gave her more fluids and by this morning her blood pressure got back to where it should be and so is her temperature (my own feet are still cold, but only because I'm a Vilensky and that's the way I was brought up). But then again, maybe that's the reason. Liam is a sports fan. I don't understand how she sleeps through the World Cup. Until this Ghana-Serbia game all games were sort of boring. Maybe that's why she's asleep. Maybe she knows what she's doing.
Last night both of slept very deeply. They came to take an X-ray of her and to cath her. People were in the room and the lights were on. They moved the X-ray machine in-and-out. I slept like a rock in the desert that doesn't feel that a yellow scorpion under it trying to tickle it. Through the sealed window I can hear a tractor mowing the alfalfa in the field....eh, I mean probably a backhoe or a bobcat doing some construction work on campus all night long. But even that noise couldn't keep us awake. At 7;15 AM Liam wakes me up with a moan. Just in time for the first game: Algeria-Slovenia. Ahhh, hospital breakfast. Nothing can beat that!!! Liam fell right back into her deep sleep.
At half time I noticed that Liam's make a strange sound when she breathes. It's similar to the the sound we all make when we're very congested. The sound of air bubbles in water. The theory is that it's fluids from what the supplements they gave her last night to address the low blood pressure. We will have to wait for dialysis to see if this removed water gives her any relief. So you see, when the system is not working right, too little water is no good; too much water is not good either.
Liam, Liam, wake up. The 2nd game is an excellent one (Ghana-Serbia). But Liam decides to skip this one too. I'm trying to explain to her that just because all the games were disappointing until now, that this game will also be a boring one. It is not. But she's in her own little world.
Tomorrow morning it's the Netherlands Vs. Denmark and I don't have any old aunts or grandmas to kill. Back when I was in the army and had to stay in base for the weekend, one of the guys always had a story: my aunt is sick, my grandma died, etc - just so they'd let him go home. We always wondered how come an Ashkenazi Jew had such a big family and how sad it was that they all died in a chain in such a short time. Poor guy.... Netherlands-Denmark, Netherlands-Denmark, Netherlands-Denmark. Think, think, think.
The games just started, but already there's a winner.
She moves to the bathroom. It takes her a total of 5 seconds to come out. Scary. Then she mops the floor. I don't know if there's a disinfecting agent on her mop or if this is just wetting the floor. In either case, she's doing it as if she's doing somebody a favor. For her large size, she moves pretty nimble the way she "flies" around the fixtures in the room. No, don't get up, you're fine. As she's heading out I'm noticing a bunch of "shmootz" under and around and under Liam's bed. And I'm noticing that she did not change her gloves as she moved to the next room. Spreading germs is what she does, not cleaning.
It's probably not her fault as she might not know better. I'm just wondering if such work is being inspected - or, is it really our job to protect Liam (and ourselves) even within the walls of the hospital?
If there's one reason I'm glad the cleaning lady is doing her job poorly and too fast is that I'm watching the Ghana-Serbia game and she keeps getting in the way. I'm trying to analyze it for Liam, but she seems uninterested. She's sleeping through it. For a matter of fact, she's sleeping through it all in the last 4-5 days. Yesterday her blood pressure, which is often too high, was too low. And she had fever. I don't think it's related to the England-US game. I didn't watch it with her. Then they gave her more fluids and by this morning her blood pressure got back to where it should be and so is her temperature (my own feet are still cold, but only because I'm a Vilensky and that's the way I was brought up). But then again, maybe that's the reason. Liam is a sports fan. I don't understand how she sleeps through the World Cup. Until this Ghana-Serbia game all games were sort of boring. Maybe that's why she's asleep. Maybe she knows what she's doing.
Last night both of slept very deeply. They came to take an X-ray of her and to cath her. People were in the room and the lights were on. They moved the X-ray machine in-and-out. I slept like a rock in the desert that doesn't feel that a yellow scorpion under it trying to tickle it. Through the sealed window I can hear a tractor mowing the alfalfa in the field....eh, I mean probably a backhoe or a bobcat doing some construction work on campus all night long. But even that noise couldn't keep us awake. At 7;15 AM Liam wakes me up with a moan. Just in time for the first game: Algeria-Slovenia. Ahhh, hospital breakfast. Nothing can beat that!!! Liam fell right back into her deep sleep.
At half time I noticed that Liam's make a strange sound when she breathes. It's similar to the the sound we all make when we're very congested. The sound of air bubbles in water. The theory is that it's fluids from what the supplements they gave her last night to address the low blood pressure. We will have to wait for dialysis to see if this removed water gives her any relief. So you see, when the system is not working right, too little water is no good; too much water is not good either.
Liam, Liam, wake up. The 2nd game is an excellent one (Ghana-Serbia). But Liam decides to skip this one too. I'm trying to explain to her that just because all the games were disappointing until now, that this game will also be a boring one. It is not. But she's in her own little world.
Tomorrow morning it's the Netherlands Vs. Denmark and I don't have any old aunts or grandmas to kill. Back when I was in the army and had to stay in base for the weekend, one of the guys always had a story: my aunt is sick, my grandma died, etc - just so they'd let him go home. We always wondered how come an Ashkenazi Jew had such a big family and how sad it was that they all died in a chain in such a short time. Poor guy.... Netherlands-Denmark, Netherlands-Denmark, Netherlands-Denmark. Think, think, think.
Thursday, June 10, 2010
A clarification and a bit more
I guess I should clarify my most recent post: "Liam is not feeling well. .... There's not much to add at this point" so that people won't read too much into things [which I didn't say]. It's true that Liam indeed is not at her best. But it's also true that this wave is not any worse than the worst times we've been through before. It's always crappy that your child is in pain and you can't help. You never get used to it. And it's good that you don't. Nobody should ever get used to it.
On the other hand, when Liam gets even the tiniest break from the pain (and if she's awake), she immediately shines: chats, jokes, says she's hungry. She's not lethargic or quite - both which are the worst. At the same time, everything stated in this blog before is still true: things can change from good to bad or vice versa in a hurry. Thus the word used "fragile".
The pains themselves
A few posts ago I mentioned this symptom that Liam has (and which I'm too lazy to look for its name again). In short what it means that what you and I may consider as a minor discomfort may appear to Liam as a major major pain. Liam is a simple, transparent, and honest person. Most of all, she's pure. She does not have the BS that the rest of us are surround ourselves with. So when she complains, the pain is real. There's no pretending or exaggeration. At the same time, nobody knows how bad the pain is or how her brain interprets it.
Hunger
Liam shows interest in food again. This is an excellent sign. It shows that she recovers or at least that she peps herself up. It's all great. Unfortunately, there's a problem: her digestion system may not be functioning properly. Thus, feeding her may cause pain or discomfort. So what do you do? She's saying "I'm hungry, I'm hungry, I'm hungry". She finally got out of the darkness of months and you have to deny her of food. That sucks. This is different from addressing pain. When she's in pain, there's a plan (sort of): you give pain killers, you console her, and if all fails we can always return to the hospital. Depriving her from food, on the other hand, is, hmm, how shall I put it....heartbreaking. You tell your own hungry child that you can't feed her.
And this is not just "we can't eat this morning because we have an MRI". This is deprivation after she didn't eat for months and months.
But what am I talking about myself? The real hero here is.....you already know it: Liam. We try to explain to her that food might hurt her. She could yell and scream and go crazy. But Liam is Liam: accepting things and moving forward. This is not to say that she's not nagging us again and again and again for food. She does. But she also knows how to compromise - all while she's in pain. She's just unbelievable.
On the other hand, when Liam gets even the tiniest break from the pain (and if she's awake), she immediately shines: chats, jokes, says she's hungry. She's not lethargic or quite - both which are the worst. At the same time, everything stated in this blog before is still true: things can change from good to bad or vice versa in a hurry. Thus the word used "fragile".
The pains themselves
A few posts ago I mentioned this symptom that Liam has (and which I'm too lazy to look for its name again). In short what it means that what you and I may consider as a minor discomfort may appear to Liam as a major major pain. Liam is a simple, transparent, and honest person. Most of all, she's pure. She does not have the BS that the rest of us are surround ourselves with. So when she complains, the pain is real. There's no pretending or exaggeration. At the same time, nobody knows how bad the pain is or how her brain interprets it.
Hunger
Liam shows interest in food again. This is an excellent sign. It shows that she recovers or at least that she peps herself up. It's all great. Unfortunately, there's a problem: her digestion system may not be functioning properly. Thus, feeding her may cause pain or discomfort. So what do you do? She's saying "I'm hungry, I'm hungry, I'm hungry". She finally got out of the darkness of months and you have to deny her of food. That sucks. This is different from addressing pain. When she's in pain, there's a plan (sort of): you give pain killers, you console her, and if all fails we can always return to the hospital. Depriving her from food, on the other hand, is, hmm, how shall I put it....heartbreaking. You tell your own hungry child that you can't feed her.
And this is not just "we can't eat this morning because we have an MRI". This is deprivation after she didn't eat for months and months.
But what am I talking about myself? The real hero here is.....you already know it: Liam. We try to explain to her that food might hurt her. She could yell and scream and go crazy. But Liam is Liam: accepting things and moving forward. This is not to say that she's not nagging us again and again and again for food. She does. But she also knows how to compromise - all while she's in pain. She's just unbelievable.
Wednesday, June 9, 2010
Fragile
Liam is not feeling well. It's possible that the little food we gave her adds to the pain. The Drs are trying different things. There's not much to add at this point.
Monday, June 7, 2010
While we're waiting for Liam to get better...
Here's a presentation from her camp, which they showed at the Make a Wish Foundation party.
Click here
Go to the bottom of the page and click on Liam's Slideshow.exe
Download it to your computer. Download time will vary - depending on your network speed.
Once download is complete, click on it to play. Turn speakers on.
Windows PCs only.
Enjoy.
Many thanks to Camp Simcha not only for putting this lovely presentation together, but for all the good time Liam had.
Click here
Go to the bottom of the page and click on Liam's Slideshow.exe
Download it to your computer. Download time will vary - depending on your network speed.
Once download is complete, click on it to play. Turn speakers on.
Windows PCs only.
Enjoy.
Many thanks to Camp Simcha not only for putting this lovely presentation together, but for all the good time Liam had.
Hold on to that picture you took
Because things went south - not days and not hours but only minutes after I posted "Click". As soon as I posted it we heard the first OOOOWWWW. It started sort of mildly. At some point Liam pooped. Sorry I'm getting a bit graphic here....Liam didn't poop for weeks-or-maybe-month now. And here we are, not only she ate solid food yesterday, but she pooped too. We thought that should relieve her. Unfortunately things got a lot worse pretty fast. Small and somewhat consolable OOOOWWWWies turned into screams and yells I DON'T FEEL WELL, I DON'T FEEL WELL, I DON'T FEEL WELL. As usual, no pain control medication helped.
This went on for 7-8-9 hours. Eventually at 1:45 AM Rachel took her to the ER. They are back in TICU - room 2213 for the moment. (Please don't call Rachel this morning as she needs the rest. Thank you.)
This went on for 7-8-9 hours. Eventually at 1:45 AM Rachel took her to the ER. They are back in TICU - room 2213 for the moment. (Please don't call Rachel this morning as she needs the rest. Thank you.)
Sunday, June 6, 2010
Click
I'm aiming (my imaginary camera), focusing, and....
It's a moment worth capturing. We reported about the gradual improvement of the last few days, but what goes on here today is beyond belief. Liam erupted. She came out of her own shell. The good old Liam is back!!! She's awake all day, sits in her chair for hours, takes walks in the `hood, talks to everybody nonstop, even drives her chair. Things might change for the worse, like they did before, but right now WE ARE HAPPY AND SIMPLY ENJOYING THE MOMENT. This is just unbelievable.
.....Click!
It's a moment worth capturing. We reported about the gradual improvement of the last few days, but what goes on here today is beyond belief. Liam erupted. She came out of her own shell. The good old Liam is back!!! She's awake all day, sits in her chair for hours, takes walks in the `hood, talks to everybody nonstop, even drives her chair. Things might change for the worse, like they did before, but right now WE ARE HAPPY AND SIMPLY ENJOYING THE MOMENT. This is just unbelievable.
.....Click!
Saturday, June 5, 2010
Ar-choo
How, how does she do it? For weeks on Liam lays there too quite. Doesn't speak, hardly opens a lazy eye' her heart rate climbs to dangerous numbers, her breathing drops and becomes too shallow, if she ever opens her mouth to speak it's only OOOOWWWWWies and "I don't feel well". It's difficult to explain to anybody who's not involved in the every day affairs what kind of thoughts and feelings we're going through when she's non-responsive and her body "broadcasts" negative signs. When it happens again and again and again over weeks and months, lets just say our thoughts and feelings are "not the best". As optimistic parents as we are, I'd not be telling the truth if I'd say otherwise.
But Liam proves us wrong again and again. Something changed for the positive in the last few days. Liam OOOOWWWWs a lot less, almost none; she sleeps more; she's more restful in general. What's been happening, as we mentioned several times before, is that they're trying new things with Liam all the time - until they find something that will address her pain with good results and on a "constant and consistent" basis. Constant & consistent in double quotes since not only they were never able to find such thing until now. Not only nothing worked, but even for what worked well for a few days somehow Liam got used to it and it stopped working. And so some pain killers, which worked in the past, gradually became less effective. But we were talking about the improvement of the past few days, remember? So what changed? As usual, with Liam it's hard to point at one single known factor. So here are several maybe's:
1. A Fentanyl patch. Beats me why it's working where other drugs failed, but why argue with success?
2. They are drawing more fluids out of her now during dialysis, which my relief the pressure on the whole system. Might.
3. Maybe another, only-Liam-knows factor.
The bottom line is that she needs far less pain medications, the color returned to her face, the shine returned to her eyes - which are open and aware and looking (not just staring into space), she started talking again - and joking.
Back when Liam was Liam, nothing made her laugh more than a loud and sudden sneeze. When the public became so healthy that there weren't enough ka-choo (bless you) around (probably thanks to the new federal health plan), Liam started introducing her own pretend sneezes. The words are coming out of her mouth as ar-choo (bless you). It's and old private joke and it's her signaling to those around her that she feels good and ready to joke around. So along with the other positive signs, the ar-choos (bless) are back.
When this feeling-better mode just started a few days ago, it was a bit scary, believe it or not. From moaning and OOOOWWWing all night long, Liam started sleeping well. Too well. He breathing became too shallow and the home monitor went off again and again and again. But then she settled down and started breathing better. Now all of the sudden it was TOO quite. Gradually every days brought some improvement.
It's always amazing how she comes out from a long silent period "ready to go": with the same old jokes, the talk about food, and the typical aura she brings with her.
Just to clarify, it's not as if suddenly Liam runs dashes or anything. She still spends most of the day laying down in bed. On the good days she'd sit up in her chair for an hour or two.
I don't want to be a party pooper, but we did see Liam making mini-comebacks before, only to return to the darkness. We're hoping for continuity of the good wave she's riding on right now.
So we deliver the good news with caution not to jinx it, but with joy and happiness nevertheless. It's the first time in weeks (months?) that we're experiencing some good news and relief. To add to the joy, we have a home nurse for some hours every week, which helps a LOT. And she's good at her job.
Our mood as a family swings with Liam's situation. Now that she's well, we're all better. To me it's most interesting to see how Liam, just by being Liam, impacts those around her. Her good mood is contagious. The medical staff, people who hardly knows her, are picking up on it too.
So what do we have left from all this blah-blah? Today the situation is pretty good. There's no guarantee that it will remain that way tomorrow or even within a few hours. As we learned already, things could change rapidly. But right now we're very happy. We're living the moment.
Tired? Who, us?
People ask me constantly how we're making it. How do we go on about it. How come we don't collapse from fatigue - physical and emotional.
The answer is simple: We can't. End of story.
No really, what would Liam do if we fall apart? We're such a long time into this ironman race, that we're sort of used to it by now. But maybe an ironman or a marathon race are not good examples. After all, a marathon, as difficult as it is, has a start and a known finish. We don't have a known end point. Maybe a better example is when you survive a plane crash. You find yourself in a desert, but have no idea which continent it is, let alone which desert it is. All you see around you is sand. Where do you go? East, west, north, or south? What's behind that ridge on the horizon, hope or despair? You have no choice but survive. Fatigue is irrelevant. It's very much the same story for us.
Mental exercise help, of course. The secret, to me, is that you learn to accept every situation and every moment the way it is. There are no expectation. And you tell yourself that whatever comes it's ok. This is not to say that you don't try to improve and optimize things - just that you learn to accept what can't be changed and be ok with it. Rachel probably knows how to express this better than me. But I'm the blogger here so you have to suffer from my mediocracy.
The bigger wonder for me is how does Liam "do it"? How does she climb out of the hole again and again and again. We're just her assistants. She's the one who's doing all the hard work. She's my guru. She doesn't preach anything and it's easy for me to love her.
How to stay in shape
At the office they gave us pedometers. The challenge is to walk 10,000 steps every day. The days I'm working from home I easily put on 15,000 steps. I just keep going back and forth to the fridge to get a snack. What a brilliant program!!!
But Liam proves us wrong again and again. Something changed for the positive in the last few days. Liam OOOOWWWWs a lot less, almost none; she sleeps more; she's more restful in general. What's been happening, as we mentioned several times before, is that they're trying new things with Liam all the time - until they find something that will address her pain with good results and on a "constant and consistent" basis. Constant & consistent in double quotes since not only they were never able to find such thing until now. Not only nothing worked, but even for what worked well for a few days somehow Liam got used to it and it stopped working. And so some pain killers, which worked in the past, gradually became less effective. But we were talking about the improvement of the past few days, remember? So what changed? As usual, with Liam it's hard to point at one single known factor. So here are several maybe's:
1. A Fentanyl patch. Beats me why it's working where other drugs failed, but why argue with success?
2. They are drawing more fluids out of her now during dialysis, which my relief the pressure on the whole system. Might.
3. Maybe another, only-Liam-knows factor.
The bottom line is that she needs far less pain medications, the color returned to her face, the shine returned to her eyes - which are open and aware and looking (not just staring into space), she started talking again - and joking.
Back when Liam was Liam, nothing made her laugh more than a loud and sudden sneeze. When the public became so healthy that there weren't enough ka-choo (bless you) around (probably thanks to the new federal health plan), Liam started introducing her own pretend sneezes. The words are coming out of her mouth as ar-choo (bless you). It's and old private joke and it's her signaling to those around her that she feels good and ready to joke around. So along with the other positive signs, the ar-choos (bless) are back.
When this feeling-better mode just started a few days ago, it was a bit scary, believe it or not. From moaning and OOOOWWWing all night long, Liam started sleeping well. Too well. He breathing became too shallow and the home monitor went off again and again and again. But then she settled down and started breathing better. Now all of the sudden it was TOO quite. Gradually every days brought some improvement.
It's always amazing how she comes out from a long silent period "ready to go": with the same old jokes, the talk about food, and the typical aura she brings with her.
Just to clarify, it's not as if suddenly Liam runs dashes or anything. She still spends most of the day laying down in bed. On the good days she'd sit up in her chair for an hour or two.
I don't want to be a party pooper, but we did see Liam making mini-comebacks before, only to return to the darkness. We're hoping for continuity of the good wave she's riding on right now.
So we deliver the good news with caution not to jinx it, but with joy and happiness nevertheless. It's the first time in weeks (months?) that we're experiencing some good news and relief. To add to the joy, we have a home nurse for some hours every week, which helps a LOT. And she's good at her job.
Our mood as a family swings with Liam's situation. Now that she's well, we're all better. To me it's most interesting to see how Liam, just by being Liam, impacts those around her. Her good mood is contagious. The medical staff, people who hardly knows her, are picking up on it too.
So what do we have left from all this blah-blah? Today the situation is pretty good. There's no guarantee that it will remain that way tomorrow or even within a few hours. As we learned already, things could change rapidly. But right now we're very happy. We're living the moment.
Tired? Who, us?
People ask me constantly how we're making it. How do we go on about it. How come we don't collapse from fatigue - physical and emotional.
The answer is simple: We can't. End of story.
No really, what would Liam do if we fall apart? We're such a long time into this ironman race, that we're sort of used to it by now. But maybe an ironman or a marathon race are not good examples. After all, a marathon, as difficult as it is, has a start and a known finish. We don't have a known end point. Maybe a better example is when you survive a plane crash. You find yourself in a desert, but have no idea which continent it is, let alone which desert it is. All you see around you is sand. Where do you go? East, west, north, or south? What's behind that ridge on the horizon, hope or despair? You have no choice but survive. Fatigue is irrelevant. It's very much the same story for us.
Mental exercise help, of course. The secret, to me, is that you learn to accept every situation and every moment the way it is. There are no expectation. And you tell yourself that whatever comes it's ok. This is not to say that you don't try to improve and optimize things - just that you learn to accept what can't be changed and be ok with it. Rachel probably knows how to express this better than me. But I'm the blogger here so you have to suffer from my mediocracy.
The bigger wonder for me is how does Liam "do it"? How does she climb out of the hole again and again and again. We're just her assistants. She's the one who's doing all the hard work. She's my guru. She doesn't preach anything and it's easy for me to love her.
How to stay in shape
At the office they gave us pedometers. The challenge is to walk 10,000 steps every day. The days I'm working from home I easily put on 15,000 steps. I just keep going back and forth to the fridge to get a snack. What a brilliant program!!!
Tuesday, June 1, 2010
Unuseful guide to obsolete farming equipment
....and Liam is back home. WOW, that was fast. Per the Drs, all she needed was a good dialysis. Not sure that I'm buying it, but Dr. Rachel is in charge. I'm just the take-out-the-trash-dammit guy. If the Dr is happy, then so do I. Really nothing happened. Liam was admitted to the hospital yesterday late morning. She had a scheduled dialysis. Did not get any additional medication to what she gets at home. Slept good at night, and returned home today. Maybe she just wants to see if the insurance company is paying attention.
Tractor
I was never a good sleeper. It started at a very young age - probably infancy - in the kibbutz. At night, I could hear the wolverines (the Israeli version of them) howling at night, the small owls hoo-hoo'ing, the rooster with the always off alarm clock, the geese in the petting zoo trying to shoo away a mongoose - or just being impatient for their breakfast. All these night sounds in the valley kept me awake, and scared.
When I finally got over my fears, there were the tractors going out to the fields when it was still dark who woke me up. It doesn't take much. In the quite, rural, agricultural valley, a single tractor can be heard quite loudly everywhere. And tractors were used for everything. Even if it wasn't corn or cotton or apples season, tractors still were still used for service in the community - hauling trash "wagons", collecting and distributing laundry, mowing the lawns, etc. Almost at all times you could hear a tractor's engine. They all kept me awake. I need perfect silence and perfect darkness to sleep well.
When Liam stays at home, we often use an oxygen machine. This "tractor" is located only a few feet away from us. We also keep the TV on for her. Yet, with all this noise and the glare and the fact that I'm on the couch next to her and Liam herself moaning, I still manage to sleep. Sometimes I feel like going back to the northern valley, to wake up the wolverines and the owls and the geese and the tractors - just to test that I can still sleep.
Pump
Liam's heart rate goes from restful and "normal" - 70-90 ticks per minute - to a dangerous range - 140-170 - in a split second. It's caused by a dysfunctional nervous system. Nothing anybody can do about it - I think. It used to be pretty scary when it happened first. I guess we sort of got used to it now. The surprising fact is that many times when that happens, her blood pressure is just fine. I referred to my hydrology notebooks from my water engineering degree. There it was stated clearly: when the pump is working harder and the pipes don't change in diameter, and the number of valves/emitters is the same, and the friction factor is the same, the pressure must grow. I scratched my head (just to verify no new hair grew back, you know). That was puzzling. After all, I "graduated with excellence" from this 18-month course. And I designed, installed, and maintained many water infrastructure systems as well as acres and acres of irrigation. So what's wrong with my calculation.
I decided to ask a Dr. He told me the same thing I already know for years: you wasted your time studying irrigation engineering, you dumb ass. Alright, I'll stick to what I do best: watch sports and drink beer. (The solution to the puzzle, BTW, is not simple at all. That's because our bodies are not like a pumping station and piping system. For example, the diameter or the veins DO CHANGE depends on many factors, blood pressure just one of them. It foes on and on. It'd take me 7 years and residency to explain it all. Back to the TV.)
So tonight Liam's back home. The tractor will work in the field, the pumps will pump, the monitors will warn us about heart rate and oxygen level, and Curious George will play all night on the TV. But I'll take all that busy street any day I-man-night of the week to have Liam next to us.
Tractor
I was never a good sleeper. It started at a very young age - probably infancy - in the kibbutz. At night, I could hear the wolverines (the Israeli version of them) howling at night, the small owls hoo-hoo'ing, the rooster with the always off alarm clock, the geese in the petting zoo trying to shoo away a mongoose - or just being impatient for their breakfast. All these night sounds in the valley kept me awake, and scared.
When I finally got over my fears, there were the tractors going out to the fields when it was still dark who woke me up. It doesn't take much. In the quite, rural, agricultural valley, a single tractor can be heard quite loudly everywhere. And tractors were used for everything. Even if it wasn't corn or cotton or apples season, tractors still were still used for service in the community - hauling trash "wagons", collecting and distributing laundry, mowing the lawns, etc. Almost at all times you could hear a tractor's engine. They all kept me awake. I need perfect silence and perfect darkness to sleep well.
When Liam stays at home, we often use an oxygen machine. This "tractor" is located only a few feet away from us. We also keep the TV on for her. Yet, with all this noise and the glare and the fact that I'm on the couch next to her and Liam herself moaning, I still manage to sleep. Sometimes I feel like going back to the northern valley, to wake up the wolverines and the owls and the geese and the tractors - just to test that I can still sleep.
Pump
Liam's heart rate goes from restful and "normal" - 70-90 ticks per minute - to a dangerous range - 140-170 - in a split second. It's caused by a dysfunctional nervous system. Nothing anybody can do about it - I think. It used to be pretty scary when it happened first. I guess we sort of got used to it now. The surprising fact is that many times when that happens, her blood pressure is just fine. I referred to my hydrology notebooks from my water engineering degree. There it was stated clearly: when the pump is working harder and the pipes don't change in diameter, and the number of valves/emitters is the same, and the friction factor is the same, the pressure must grow. I scratched my head (just to verify no new hair grew back, you know). That was puzzling. After all, I "graduated with excellence" from this 18-month course. And I designed, installed, and maintained many water infrastructure systems as well as acres and acres of irrigation. So what's wrong with my calculation.
I decided to ask a Dr. He told me the same thing I already know for years: you wasted your time studying irrigation engineering, you dumb ass. Alright, I'll stick to what I do best: watch sports and drink beer. (The solution to the puzzle, BTW, is not simple at all. That's because our bodies are not like a pumping station and piping system. For example, the diameter or the veins DO CHANGE depends on many factors, blood pressure just one of them. It foes on and on. It'd take me 7 years and residency to explain it all. Back to the TV.)
So tonight Liam's back home. The tractor will work in the field, the pumps will pump, the monitors will warn us about heart rate and oxygen level, and Curious George will play all night on the TV. But I'll take all that busy street any day I-man-night of the week to have Liam next to us.
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