That's the end of this blog. I have a new blog here.
To those who don't know the history, this is not the story of Liam's life - just the last year of her life. The rest of her mostly joyful [but not always] life and her extra-special personality is not yet documented - except for what's in our hearts.
Sunday, September 5, 2010
Saturday, September 4, 2010
Friday, September 3, 2010
No more visits, please
Dear friends,
We wish for no more visits at this time. We appreciate all the support and love everybody poured on us. We need some time to be alone.
("Alone?" asked Toad, "why does Frog want to be alone? He has me for a friend.")
We wish for no more visits at this time. We appreciate all the support and love everybody poured on us. We need some time to be alone.
("Alone?" asked Toad, "why does Frog want to be alone? He has me for a friend.")
Thursday, September 2, 2010
Types
My Spin For Kids campaign. Thank you.
Please respect visiting hours. Thanks.
Types of tears
The most difficult thing is...
Please respect visiting hours. Thanks.
Types of tears
- Decision making tears.
- Signing papers tears.
- Announcement tears.
- Reading email tears.
- Hugging tears. (No really, stop hugging me!!!)
- Thoughts about others' tears.
- Thoughts about Meitav tears.
- Memory tears.
- Nurses (that we love and will never forget) tears (shouldn't they be strong, immune to that kind of stuff)?
- Unexplained and uninvited tears - especially when you're driving or in the middle of a work meeting.
The most difficult thing is...
- Not death itself, but deciding on it for somebody else - somebody you love. someone who's part of your own self.
- Not death itself, but waiting for it.
- To look into Liam's open, wondering, curious, beautiful eyes - after the decision was made - asking what's going on.
- To feel her little hand squeeze my finger.
- To know, yes know, that she doesn't want to go, but she doesn't have the strength to stay. That's also another type of tears.
- To crawl into Liam's bed, to hug her, to feel her warm skin.
- To crawl into Liam's bed, to hug her, to feel her warm skin. (No, that's not a typo.)
Wednesday, September 1, 2010
Liam Visiting Hours
My Spin For Kids campaign. Thank you.
Dear all,
We have farmed out visiting hours for people to say goodbye to Liam. Please help us through this tough period by adhering to the rules:
If you can delay your visit until after Liam's transition, that may help us.
Thanks.
The family.
Dear all,
We have farmed out visiting hours for people to say goodbye to Liam. Please help us through this tough period by adhering to the rules:
- Visiting hours are 4-6 PM.
- It's strongly advised to still call BEFORE you come. Call Rudra, 404 957 7402.
- Please come in to say goodbye for 5-10 minutes only. You're all welcome to sit outside on the porch longer than that, of course.
If you can delay your visit until after Liam's transition, that may help us.
Thanks.
The family.
Tuesday, August 31, 2010
The Final Road
Dear Friends,
Liam's condition worsened seriously over the past weekend. On Monday, 8/30/2010, we decided against any further treatment. She's entering hospice care at home. The only treatment given will be to keep her comfortable.
Liam touched the life of so many of us. I'm sure many people want to come say goodbye. Please allow us time to settle down with Liam at home and refrain from visiting and calling (including Rachel's cell phone). We know you care and love and cry with us. We will post visiting hours - when we're ready. Please respect the family's requests.
Many tears.
Friday, August 27, 2010
Watching football together again
My Spin For Kids campaign. Thank you.
It's Friday night. The Falcons are playing a pre-season game. I turned the TV on. Back before all this mess started, Liam used to be my sports buddy. Liam, who was asleep all day (and most of the last several days), heard the TV and opened her eyes. She gave two most unconvincing OOOWWWies, then just laid there with her eyes wide open. We read a few stories (one eye kept on the game), then she went back to sleep, leaving me to suffer the Falcons alone.
Here's where things stand:
It looks like the fungus is on its way out - if not completely out already. Earlier this week the culture came back negative and we were very hopeful that it was gone. But that was only after 8 and 16 and 24 hours. These results all came back negative. But then the 36-hours culture of 8/24 came back positive. Bummer. However, it was explained to us that the more it takes the fungus to show up in the lab, the weaker it gets. And indeed, the culture from 8/25 is negative. We're hopeful that it will continue like that. (OOOF, these Falcons are just terrible.) Where were we?
Earlier this week Liam had also problems breathing. They had to put the oxygen mask on her. Meanwhile things got better. She is with her usual nose-thingy fro breathing.
Since they removed the vas-cath out on Tuesday, Liam didn't have any dialysis this week. So far so good. The target, as far as I know, is to restore a new vas-cath on Monday. That of course is depended on the infection.
Ok Liam, I know you love football, but this game is just awful.
It's Friday night. The Falcons are playing a pre-season game. I turned the TV on. Back before all this mess started, Liam used to be my sports buddy. Liam, who was asleep all day (and most of the last several days), heard the TV and opened her eyes. She gave two most unconvincing OOOWWWies, then just laid there with her eyes wide open. We read a few stories (one eye kept on the game), then she went back to sleep, leaving me to suffer the Falcons alone.
Here's where things stand:
It looks like the fungus is on its way out - if not completely out already. Earlier this week the culture came back negative and we were very hopeful that it was gone. But that was only after 8 and 16 and 24 hours. These results all came back negative. But then the 36-hours culture of 8/24 came back positive. Bummer. However, it was explained to us that the more it takes the fungus to show up in the lab, the weaker it gets. And indeed, the culture from 8/25 is negative. We're hopeful that it will continue like that. (OOOF, these Falcons are just terrible.) Where were we?
Earlier this week Liam had also problems breathing. They had to put the oxygen mask on her. Meanwhile things got better. She is with her usual nose-thingy fro breathing.
Since they removed the vas-cath out on Tuesday, Liam didn't have any dialysis this week. So far so good. The target, as far as I know, is to restore a new vas-cath on Monday. That of course is depended on the infection.
Ok Liam, I know you love football, but this game is just awful.
Tuesday, August 24, 2010
A very close call
My Spin For Kids campaign. Thank you.
It is out
Tuesday, 8/24/10
Step 1, taking it out, is done with success. Confused? Keep on reading.
This I believe
Oh yeah, and I forgot to mention: I believe in Liam. I really do. It's difficult not to believe in her after seeing her in the past 15-something years climbing out of the deepest and darkest holes. Not with the help of any god, mind you, but with her own will power.
Back in time
Monday, 8/23/10 (Yesterday....all my trouble seemed so far away...)
Back in November 2009, Liam almost said goodbye for the last time. I'm not sure if today was comparable, but it had some scary moments. Much like back then, I was sitting in the office when I received the call "get here NOW". Unlike back then, when I was very emotional, I calmly sent an email to my team asking them to cover for me, packed my unfinished lunch (since lunch is the 2nd most important meal in the day), and drove to the hospital. Back in Nov 2009 I was crying all the way over. Today I very calmly was listening to sports radio (Falcons suck). Strange. And I was thinking about what's waiting for me in the hospital and remained calm. If this is her time to go, I thought, then it's her time to go.
Just like Nov 2009, by the time I got to the hospital things have stabilized (why do I have to always miss all the fun? Why?). From what I've been told, while at dialysis Liam's oxygen saturation dropped down to a dangerous level, she was very pale - maybe white, her blood pressure and heart rate went up through the roof. She was maybe, maybe, on her way out. Yet, somehow she climbed out of the hole again - at least for now. Anyway, they disconnected her from the dialysis machine and slowly things got better. By the time I got there things were much better and I was able to complete my lunch (I know you wanted to get a closure on that). Obviously, I'm giving the short version - without the high emotions and many details - none of which I witnessed myself.
This was completely unplanned. This is not what we wanted to talk about today. The topic was supposed to be:
Two for the price of one
In the past week two infections were discovered in Liam: staph (which she had before once and was treated successfully with antibiotics) and yeast. It's the yeast we wanted to talk about today. Actually, I much rather talking about soccer and beer, but yeast it is:
While the staph bacteria adheres to the walls of the lead lines (and blood vessels), the yeast works itself into the material of the leads itself. It becomes part of the hoses, sort of. Thus, it's a lot harder to defeat with antibiotics. The planned solution is:
1 - Pull her vas-cath out (vas-cath is the 3 lines which merge into the vein; two lines for dialysis, one for the TPN).
2 - Bomb her body with antibiotics while the plastic is out.
3 - Verify that no other cath's in her body (shunts) are infected with the fungus.
4 - When the monster is confirmed dead, restore a new vas-cath.
(5 - Optional: Pray for
Both pulling out and restoration are a [small] surgical procedures, which Liam's not doing too well with. But there's no other choice.
Ok, so the plan was to pull the vas-cath out immediately following dialysis. That would have allowed her max time to fight the fungus with no foreign infected plastic in her body between dialysis sessions. However, it wasn't done yesterday. As noted above, it was done today (Tuesday) - successfully. It really took only a few minutes under very light anesthesia.
Liam is breathing on her own, but still with the oxygen mask to help.
Now, two questions:
1. How did the fungus get there in the first place?
Every foreign material in our bodies is an open invitation for infections. If we have weak immune systems, as Liam does, it is much easier for the infection. If it's being "fed" with TPN, the fungus is very happy (and even asks for a second serving).
2. Why wouldn't the fungus return with the new vas-cath?
Good question. The answer is simple: there are no guarantees. For a matter of fact, Drs tell us about kids with different cath's who require repeating surgeries to replace infected ones. Considering the fact that she had this one for such a ong time (6 months, approx), I'm hopeful for a quite period (but wouldn't be surprised if the fungus returns soon).
Technicalities
Some of you keep saying "I wish that I could help". Well, maybe you can help the helpers. If you'd like to help with meals, please contact Chance (
Unbelievably amount of thanks.
Saturday, August 21, 2010
An important clarification regarding the last post (God)
My Spin For Kids campaign. Thank you.
It came to my attention that a few people read too much into the words. Some said that they could feel my frustration. It's probably the result of my poor writing skills. So please allow me to clarify this now:
1. I'm not frustrated. Period! I'm hurting with every OOOOWWWie, I'm worried about Liam's declining health (or what's left of it), I hate the planning we have to do (who wouldn't be???) - but I'm not frustrated. Frustration is when you try something or expect something and it doesn't happen (for example, I had a problem at work that we tried to solve for 4-5 months; everything we tried failed. That was frustrating). And that's not the case here. Even if they try something else to help her and are unsuccessful, I'm still not frustrated. Liam is such a complex case that getting frustrated with her would be too naive. Furthermore, I'm not the type of a guy who easily gets frustrated. Frustration is so unproductive that I simply (and naturally, somehow) move away from it quite easily.
Lastly, I didn't write it overnight. It sat in my draft folder for several days. I revised it several times and even showed parts of it to readers to get feedback before posting it. So if there was any frustration in me (which there wasn't), it surely wasn't there for the whole week that the writing was being worked on.
So there was no frustration. Case closed.
2. There's no linkage between my own disbelief in God and everything that's going on with Liam. Nothing, zero, nada. I even said it in the previous post: I held my current opinions BEFORE Liam came to this world. For a matter of fact, I feel a bit guilty. Not because I'm Jewish (and that's what Mom taught me...), but because I used Liam to express my thoughts about society and God. She really has nothing to do with it.
At the same time, since Liam got sick, God is being mentioned in my vicinity more than ever before. So it was important for me to explain to the "God-expressors" that maybe, just maybe, God is not that universal like they expect it to be. As I said previously, food for thought.
3. God that's in the heart: Under the question "What is God" I should have probably added another item. Many people believe in "SOMETHING". They may call it God or may call it something else. They may or may not practice religion; they may not talk about "it" everywhere; but they do have such concept in their heart. I have nothing against such concept. My only "problem" with God is when we, human beings, can't explain something, we use the easy-out. For example, Liam: why was she born like that? is there a medical explanation? why such a good person "deserve" all that suffering? (I'm using the word "deserve" very reluctantly...."deserve" implies that it was supposed to be different, which nobody knows); etc. Well, not everything MUST have an explanation. I think nature is such that we don't know enough about it yet. Maybe some day we will. Meanwhile (and thousands of years ago) people replaced I-don't-know with it-must-be-God. It caught on and stayed.
Bottom line:
I was extremely calm, non-frustrated, and clear minded when I wrote everything so far. If you read something into it, something I didn't say explicitly, you're welcome to bring it up and I'll clarify it for you.
It came to my attention that a few people read too much into the words. Some said that they could feel my frustration. It's probably the result of my poor writing skills. So please allow me to clarify this now:
1. I'm not frustrated. Period! I'm hurting with every OOOOWWWie, I'm worried about Liam's declining health (or what's left of it), I hate the planning we have to do (who wouldn't be???) - but I'm not frustrated. Frustration is when you try something or expect something and it doesn't happen (for example, I had a problem at work that we tried to solve for 4-5 months; everything we tried failed. That was frustrating). And that's not the case here. Even if they try something else to help her and are unsuccessful, I'm still not frustrated. Liam is such a complex case that getting frustrated with her would be too naive. Furthermore, I'm not the type of a guy who easily gets frustrated. Frustration is so unproductive that I simply (and naturally, somehow) move away from it quite easily.
Lastly, I didn't write it overnight. It sat in my draft folder for several days. I revised it several times and even showed parts of it to readers to get feedback before posting it. So if there was any frustration in me (which there wasn't), it surely wasn't there for the whole week that the writing was being worked on.
So there was no frustration. Case closed.
2. There's no linkage between my own disbelief in God and everything that's going on with Liam. Nothing, zero, nada. I even said it in the previous post: I held my current opinions BEFORE Liam came to this world. For a matter of fact, I feel a bit guilty. Not because I'm Jewish (and that's what Mom taught me...), but because I used Liam to express my thoughts about society and God. She really has nothing to do with it.
At the same time, since Liam got sick, God is being mentioned in my vicinity more than ever before. So it was important for me to explain to the "God-expressors" that maybe, just maybe, God is not that universal like they expect it to be. As I said previously, food for thought.
3. God that's in the heart: Under the question "What is God" I should have probably added another item. Many people believe in "SOMETHING". They may call it God or may call it something else. They may or may not practice religion; they may not talk about "it" everywhere; but they do have such concept in their heart. I have nothing against such concept. My only "problem" with God is when we, human beings, can't explain something, we use the easy-out. For example, Liam: why was she born like that? is there a medical explanation? why such a good person "deserve" all that suffering? (I'm using the word "deserve" very reluctantly...."deserve" implies that it was supposed to be different, which nobody knows); etc. Well, not everything MUST have an explanation. I think nature is such that we don't know enough about it yet. Maybe some day we will. Meanwhile (and thousands of years ago) people replaced I-don't-know with it-must-be-God. It caught on and stayed.
Bottom line:
I was extremely calm, non-frustrated, and clear minded when I wrote everything so far. If you read something into it, something I didn't say explicitly, you're welcome to bring it up and I'll clarify it for you.
Friday, August 20, 2010
But if there was a God
My Spin For Kids campaign. Thank you.
Caution, personal "disclaimer": This is MY blog. I don't owe anybody any explanations or excuses. Still, many of the readers here are friends, family, or just people who care. There's no intention here to hurt anybody's feeling. Please remember that as you read. Again, this is MY blog and my place to express my thoughts.
WARNING: I'm shooting randomly from the hip with no aiming.
Ok, here we go:
Those of you who know me well know that I don't believe in god. I have a long history of maybe not really searching, but asking a lot of question. I did have my doubts - both ways - when growing up (I'll be happy to elaborate, but this is not really the topping here). Later I also did some self studying. All led me to where I am today - not believing in god - which I can explain and defend (defend??? what is there to defend?) at any time (it may take some beer if you want to hear me....I don't work for free).
But if there was a God (or for those readers who do believe in such), how can you explain and justify what Liam is going through? Is that God who choose to put her through all this misery? Why? What did she do wrong? What's the message in it and for who? Either this guy doesn't know good from bad or he doesn't exist. I don't see many other options here.
If you, yes you, my loyal and caring reader, if you have these answers, I'd love to hear them. I'll pay for the beer or coffee or whatever. But please no "God is working in mysterious ways" and no "God is graceful" all that BS. Been there done that. I don't buy any of that. My own family, whom I never got to meet, was wiped out in the Holocaust - together with the rest of the Jews and Gypsies and homosexuals and many other innocents. No good came out of that. I lost some of my best friends during the years. No mystery was revealed there. (But just to clarify, I don't not-believing in god because of any of that.) Don't give me biblical "miracles" either. Neither of us were there to witness and we don't know who wrote it. I could go on and on, but you get the point. And now there's Liam, who not only done nothing wrong (to who? and who's judging???), but all she is is goodness, and love. So if you have any answers, please stop by Liam's bed and explain to her what did she do to deserve it. Don't leave out the God part. Be honest with yourself.
There are many expressions, slogans, and claims - most of them used in many religions. For example, "don't question God's wisdom....he must have his reasons...". Or, "Liam is suffering for a reason....beyond our understanding...". Please don't bother trying to explain any of those to me or to Liam - if you can't prove them. It's easy to throw the responsibility on somebody else with no cost to you; likewise, it's easy to let somebody else suffer when you don't feel a thing. Sorry, words won't do it.
And if you go to church or synagogue or mosque or whatever to pray, please ask for some answers and explanation for your pray. Not from your rabbi or priest but from your God himself. And please, please, please share them with me.
So two questions then:
1. What do you believe in, Asher? You must believe in something?
Glad you asked. I believe in myself first of all. I believe that love and kindness can solve many of our problems. And I believe that education can teach us take responsibility and action and not hang everything on God. (But I don't believe I'll get to watch golf this weekend.)
2. So what is God, then?
I believe God is an entity that early humans invented and created so it would help them explain nature. But like so many other things in this world, it got overrated and out of hand. (Thus, I also believe that all gods were created equal. I don't see no difference between the Jewish god and Jesus and Muhammad and Shiva and....well, you get the point. They are all man-made gods or sons-of-gods or whatever you wanna call it.)
Many people said several times how much they pray for Liam. We certainly appreciate it. We really do! People's own beliefs and good intention has nothing to do with this posting. At the same time, what are all the prays good for if they don't yield results???? (Similarly, why pray? Who can tell if it's good or bad or meaningless? Should I thank people who pray for Liam? Why?)
This is not a rant. I held my opinions - I prefer to call it KNOWLEDGE - way before Liam came into this world. This is food for thought for anybody who can justify Liam's suffering and who can link it to their God.
This posting's title is "But if there was a God". Am I angry at God or think he's being unfair? No, since I don't believe in its existence.
And now, if you excuse me, I'm heading over to her REAL bed to hold her REAL hand and hear her REAL screams. Ok baby, Abba's here. I'm sorry that you're hurting. I'm sorry you don't feel well. You don't deserve this. Soooo sorry. Ok, ssshhhhhhhh now, baby, let's try to get some rest. SSSSSHHHHHHHHH.
Caution, personal "disclaimer": This is MY blog. I don't owe anybody any explanations or excuses. Still, many of the readers here are friends, family, or just people who care. There's no intention here to hurt anybody's feeling. Please remember that as you read. Again, this is MY blog and my place to express my thoughts.
WARNING: I'm shooting randomly from the hip with no aiming.
Ok, here we go:
Those of you who know me well know that I don't believe in god. I have a long history of maybe not really searching, but asking a lot of question. I did have my doubts - both ways - when growing up (I'll be happy to elaborate, but this is not really the topping here). Later I also did some self studying. All led me to where I am today - not believing in god - which I can explain and defend (defend??? what is there to defend?) at any time (it may take some beer if you want to hear me....I don't work for free).
But if there was a God (or for those readers who do believe in such), how can you explain and justify what Liam is going through? Is that God who choose to put her through all this misery? Why? What did she do wrong? What's the message in it and for who? Either this guy doesn't know good from bad or he doesn't exist. I don't see many other options here.
If you, yes you, my loyal and caring reader, if you have these answers, I'd love to hear them. I'll pay for the beer or coffee or whatever. But please no "God is working in mysterious ways" and no "God is graceful" all that BS. Been there done that. I don't buy any of that. My own family, whom I never got to meet, was wiped out in the Holocaust - together with the rest of the Jews and Gypsies and homosexuals and many other innocents. No good came out of that. I lost some of my best friends during the years. No mystery was revealed there. (But just to clarify, I don't not-believing in god because of any of that.) Don't give me biblical "miracles" either. Neither of us were there to witness and we don't know who wrote it. I could go on and on, but you get the point. And now there's Liam, who not only done nothing wrong (to who? and who's judging???), but all she is is goodness, and love. So if you have any answers, please stop by Liam's bed and explain to her what did she do to deserve it. Don't leave out the God part. Be honest with yourself.
There are many expressions, slogans, and claims - most of them used in many religions. For example, "don't question God's wisdom....he must have his reasons...". Or, "Liam is suffering for a reason....beyond our understanding...". Please don't bother trying to explain any of those to me or to Liam - if you can't prove them. It's easy to throw the responsibility on somebody else with no cost to you; likewise, it's easy to let somebody else suffer when you don't feel a thing. Sorry, words won't do it.
And if you go to church or synagogue or mosque or whatever to pray, please ask for some answers and explanation for your pray. Not from your rabbi or priest but from your God himself. And please, please, please share them with me.
So two questions then:
1. What do you believe in, Asher? You must believe in something?
Glad you asked. I believe in myself first of all. I believe that love and kindness can solve many of our problems. And I believe that education can teach us take responsibility and action and not hang everything on God. (But I don't believe I'll get to watch golf this weekend.)
2. So what is God, then?
I believe God is an entity that early humans invented and created so it would help them explain nature. But like so many other things in this world, it got overrated and out of hand. (Thus, I also believe that all gods were created equal. I don't see no difference between the Jewish god and Jesus and Muhammad and Shiva and....well, you get the point. They are all man-made gods or sons-of-gods or whatever you wanna call it.)
Many people said several times how much they pray for Liam. We certainly appreciate it. We really do! People's own beliefs and good intention has nothing to do with this posting. At the same time, what are all the prays good for if they don't yield results???? (Similarly, why pray? Who can tell if it's good or bad or meaningless? Should I thank people who pray for Liam? Why?)
This is not a rant. I held my opinions - I prefer to call it KNOWLEDGE - way before Liam came into this world. This is food for thought for anybody who can justify Liam's suffering and who can link it to their God.
This posting's title is "But if there was a God". Am I angry at God or think he's being unfair? No, since I don't believe in its existence.
And now, if you excuse me, I'm heading over to her REAL bed to hold her REAL hand and hear her REAL screams. Ok baby, Abba's here. I'm sorry that you're hurting. I'm sorry you don't feel well. You don't deserve this. Soooo sorry. Ok, ssshhhhhhhh now, baby, let's try to get some rest. SSSSSHHHHHHHHH.
Thursday, August 19, 2010
The infections are back
My Spin For Kids campaign. Thank you.
Methods of fighting them are being discussed at the present time. Meanwhile, Liam screams. It's not fun.
Methods of fighting them are being discussed at the present time. Meanwhile, Liam screams. It's not fun.
Wednesday, August 18, 2010
Meanwhile, Liam screams
My Spin For Kids campaign. Thank you.
The early days in the hospital are always the most difficult. They are searching, talking, taking lab samples, and maybe even guessing some. Meanwhile, Liam is screaming. Pain meds which used to work well on her, are suddenly less effective. That's the situation as of Wednesday AM.
The early days in the hospital are always the most difficult. They are searching, talking, taking lab samples, and maybe even guessing some. Meanwhile, Liam is screaming. Pain meds which used to work well on her, are suddenly less effective. That's the situation as of Wednesday AM.
Monday, August 16, 2010
Back in the hospital
My Spin For Kids campaign. Thank you.
Liam's back in the hospital after a very difficult weekend at home. More details to follow in the next few days.
Liam's back in the hospital after a very difficult weekend at home. More details to follow in the next few days.
Saturday, August 14, 2010
Unroutinely routine
My Spin For Kids campaign. Thank you.
Another many-downs-and-a-few-ups week. Looks like we're in a new phase - maybe (just maybe because truly we don't know and sometimes things change by the minute). In this new phase Liam is mostly sleeping or with her eyes closed. When she's not, she often complains and moans. Now, not all moans and OOOWWWWW really mean OOOWWWW. It may mean 'role me over' or 'read me a book' or 'I need company' - even if it's in the middle of the night. And sometimes they really do mean that she's in true pain.
Sunday night - Monday early AM:
Out of pain screams like that we never heard before. Never! Liam's in what looks (eh, sounds) like extreme pain. But we don't know where the OOOWWWWies coming from. There's not much we can do except for pumping more pain meds into her and try to comfort her.
I apologize, but it seems like my words are missing the target again. They are not articulated to describe what she's really going through (and us too, to an extent). And sometimes I feel like my words are not good enough for Liam either. What do my attempts at comforting her worth when she's under so much pain? Sometimes I feel that if she could she would have smacked me and tell me to get the hell out of her face. "What do you know about pain" is what she might have said. Instead, she just says OOOOOOWWWWW and NO, NO, NO and EEMA.....I don't feel well, I DON'T FEEL WELL, I DON'T FEEL WELL.
Monday: partly cloudy. Periods of discomfort but also times when she's just very quite.
Tuesday: BRIGHT AND SUNNY.
And suddenly Liam is well again (I'm told, while I'm at the office, missing all the fun). She's smiling, talking, even driving her chair. It's beyond amazing and unbelievable. By the time I get home I still see traces of that good mood, but she's tired.
Tuesday night however, a 180 degrees turn around. OOOOOWWWW OOOOWWWWW OOOOWWWW all night long. Go figure. (Now, once again, too poor of a description. I don't know what a short word combination of "OOOOWWWW all night long" means to the reader of this blog. You have to be there for every minute to truly understand it.)
Wedbesday: Some OOOWWWs but not too serious. She's very sleepy.
And this is pretty much the new phase we're in.
Another many-downs-and-a-few-ups week. Looks like we're in a new phase - maybe (just maybe because truly we don't know and sometimes things change by the minute). In this new phase Liam is mostly sleeping or with her eyes closed. When she's not, she often complains and moans. Now, not all moans and OOOWWWWW really mean OOOWWWW. It may mean 'role me over' or 'read me a book' or 'I need company' - even if it's in the middle of the night. And sometimes they really do mean that she's in true pain.
Sunday night - Monday early AM:
Out of pain screams like that we never heard before. Never! Liam's in what looks (eh, sounds) like extreme pain. But we don't know where the OOOWWWWies coming from. There's not much we can do except for pumping more pain meds into her and try to comfort her.
I apologize, but it seems like my words are missing the target again. They are not articulated to describe what she's really going through (and us too, to an extent). And sometimes I feel like my words are not good enough for Liam either. What do my attempts at comforting her worth when she's under so much pain? Sometimes I feel that if she could she would have smacked me and tell me to get the hell out of her face. "What do you know about pain" is what she might have said. Instead, she just says OOOOOOWWWWW and NO, NO, NO and EEMA.....I don't feel well, I DON'T FEEL WELL, I DON'T FEEL WELL.
Monday: partly cloudy. Periods of discomfort but also times when she's just very quite.
Tuesday: BRIGHT AND SUNNY.
And suddenly Liam is well again (I'm told, while I'm at the office, missing all the fun). She's smiling, talking, even driving her chair. It's beyond amazing and unbelievable. By the time I get home I still see traces of that good mood, but she's tired.
Tuesday night however, a 180 degrees turn around. OOOOOWWWW OOOOWWWWW OOOOWWWW all night long. Go figure. (Now, once again, too poor of a description. I don't know what a short word combination of "OOOOWWWW all night long" means to the reader of this blog. You have to be there for every minute to truly understand it.)
Wedbesday: Some OOOWWWs but not too serious. She's very sleepy.
And this is pretty much the new phase we're in.
Sunday, August 8, 2010
Cumulonimbus
My Spin For Kids campaign. Thank you.
It was a week of ups and downs. The ups did not climb that high, but the downs were pretty bad. The turns from being relaxed and well to being stressed are often sudden and abrupt.
Wednesday - partly cloudy
Moaning increased. She has some fever, but not too bad. I'm disturbed by the moaning, but Rachel goes about her business. Just before she left for dialysis we discovered a huge bug bite on her forearm. Is that what's bothering her? She was quite during dialysis but as soon as she returned home the discomfort resumed.
Thursday - clearing -> partly cloudy -> bad storm
Still at home. The pains subsided somewhat. Liam's sort of quite. But at some point her blood pressure dropped considerably and her breathing dropped to twice a minute. Twice a minute!!! She received caffeine and the numbers bounced back. She was actually in pretty good mood, joked, smiled.
But then came a terrible night with no prior warning. Liam screamed maybe out of pain, or skin irritation (from the bug bite), or general agitation. It's impossible to know. Eventually, after many hours of screaming and many pain and relaxation medicine, she fell asleep around 3 AM.
It was an important night for us to get a rest. Meitav was to return from camp on Friday. We wanted her to meet everybody at home - not in the hospital (not to mention the 7 hours of drive I had to prepare for). Well, we got no rest. None.
Friday - lightning
So with only 2-3 hours of sleep behind me I took to the road to Brevard, NC. When we returned Liam was in dialysis. After so many hours of no sleep and with a long drive behind me, I was preparing to take a snooze while Rachel went to pick Liam up. But as I put my head down a severe thunderstorm hit us and we lost power. We started discussing what to do. Should we bring Liam back home? She needs the oxygen machine and a few monitors. If we hook her up with the backup oxygen tanks, then we can't light candles in the same room. We weren't sure what to do. It was 6-ish. Georgia Power estimated the outage to be over by 8:15. We decided to take the risk and bring her home (before that we made a few phone calls and arranged for a Plan B in case power is not restored). She was very relaxed and fell right asleep. GP changed their estimate to 8:45. Then to 12:30 AM (Saturday morning).
Let me just pause here for a second and remind the reader that by that time all of us were exhausted after 36 hours of no sleep with periods on Liam screaming badly.
At that point we were seriously considering our plan B. But Liam was still sleeping comfortably. In light of the previous crazy night we were afraid that putting her in her wheelchair and schlepping her elsewhere in the middle of the night would put too much stress on her. (BTW, we were never worried about the lack of AC or lights. Minor things.) Ok, the happy ending was that power was restored by 10:30-ish. Big SIGH.
We all slept pretty good that night. Luckily, Liam cooperated.
Bike Lane
Every city biker knows it: Even when you ride on well paved paths, you always need to be on the look for hazards: a limb that you need to maneuver around, broken glass you're trying to avoid, humps and bumps, vehicles appearing around you, etc., etc., etc. In comparison, when you drive a car over the same route, you're oblivious to any of that.
Sometimes I find this blog to be much the same. We, those who take close care of Liam, are the bike riders. We* go through all humps and bumps. Most of the readers of this blog are the drivers. There's little I can do with words to explain what the "bike path" feels like.
* "We" is mostly Rachel. She's the real and only true bike rider on this path. Even I'm a driver passing by sometimes - when I go to work, for example.
It was a week of ups and downs. The ups did not climb that high, but the downs were pretty bad. The turns from being relaxed and well to being stressed are often sudden and abrupt.
Wednesday - partly cloudy
Moaning increased. She has some fever, but not too bad. I'm disturbed by the moaning, but Rachel goes about her business. Just before she left for dialysis we discovered a huge bug bite on her forearm. Is that what's bothering her? She was quite during dialysis but as soon as she returned home the discomfort resumed.
Thursday - clearing -> partly cloudy -> bad storm
Still at home. The pains subsided somewhat. Liam's sort of quite. But at some point her blood pressure dropped considerably and her breathing dropped to twice a minute. Twice a minute!!! She received caffeine and the numbers bounced back. She was actually in pretty good mood, joked, smiled.
But then came a terrible night with no prior warning. Liam screamed maybe out of pain, or skin irritation (from the bug bite), or general agitation. It's impossible to know. Eventually, after many hours of screaming and many pain and relaxation medicine, she fell asleep around 3 AM.
It was an important night for us to get a rest. Meitav was to return from camp on Friday. We wanted her to meet everybody at home - not in the hospital (not to mention the 7 hours of drive I had to prepare for). Well, we got no rest. None.
Friday - lightning
So with only 2-3 hours of sleep behind me I took to the road to Brevard, NC. When we returned Liam was in dialysis. After so many hours of no sleep and with a long drive behind me, I was preparing to take a snooze while Rachel went to pick Liam up. But as I put my head down a severe thunderstorm hit us and we lost power. We started discussing what to do. Should we bring Liam back home? She needs the oxygen machine and a few monitors. If we hook her up with the backup oxygen tanks, then we can't light candles in the same room. We weren't sure what to do. It was 6-ish. Georgia Power estimated the outage to be over by 8:15. We decided to take the risk and bring her home (before that we made a few phone calls and arranged for a Plan B in case power is not restored). She was very relaxed and fell right asleep. GP changed their estimate to 8:45. Then to 12:30 AM (Saturday morning).
Let me just pause here for a second and remind the reader that by that time all of us were exhausted after 36 hours of no sleep with periods on Liam screaming badly.
At that point we were seriously considering our plan B. But Liam was still sleeping comfortably. In light of the previous crazy night we were afraid that putting her in her wheelchair and schlepping her elsewhere in the middle of the night would put too much stress on her. (BTW, we were never worried about the lack of AC or lights. Minor things.) Ok, the happy ending was that power was restored by 10:30-ish. Big SIGH.
We all slept pretty good that night. Luckily, Liam cooperated.
Cumulonimbus
The most disturbing thing in the past several weeks is the fact that Liam smiles less and less - nearly none. When she's not sleeping she's almost always under stress. Is she beginning to shutdown????
Bike Lane
Every city biker knows it: Even when you ride on well paved paths, you always need to be on the look for hazards: a limb that you need to maneuver around, broken glass you're trying to avoid, humps and bumps, vehicles appearing around you, etc., etc., etc. In comparison, when you drive a car over the same route, you're oblivious to any of that.
Sometimes I find this blog to be much the same. We, those who take close care of Liam, are the bike riders. We* go through all humps and bumps. Most of the readers of this blog are the drivers. There's little I can do with words to explain what the "bike path" feels like.
* "We" is mostly Rachel. She's the real and only true bike rider on this path. Even I'm a driver passing by sometimes - when I go to work, for example.
Tuesday, August 3, 2010
Mid week report - down and then up
My Spin For Kids campaign. Thank you.
Liam's home since Saturday. The first 2 1/2 days were a nightmare. She screamed out of pain. Fortunately, this pain was controllable with meds (unlike those nights in the hospital when nothing helped). Unfortunately, when she wasn't in pain she was asleep. To be honest, if it was up to me alone, we would still be in the hospital. Liam started showing "bad signs" of "something" on Friday night in the hospital. There was no fever and all the rest of the vital signs were well. But there was pain, pain, pain. I'm too much of a chicken to take her home like this. But Rachel is truly Superwoman. She's scared of nothing. So we didn't get much sleep Saturday night.
Then, sensing that our life is too easy, AT&T disabled our DSL just like that (it turns out that they have an official policy to be SOB's - for real....they quietly and secretly changing the modem access password without letting the customer know....when you get stuck and call them - after spending 30 minutes on hold, they share the new pas word). Even after the password issue was resolved it turned out there are some physical problems with our Internet line.
What does all of that has to do with Liam? Well, it doesn't, except for the fact that we have so much shit going on that when something like that happens it just pushes you over the edge.
Relief:
Monday morning continued to be rough, just like the night before. When they left for dialysis Liam was still uncomfortable. Rachel loaded the hospital-ready bag just in case they would stay in TICU. But when Liam returned home she was so much better. Not complaining any more, very quite, not requiring pain medication. Monday night was quite too. And this is where she is right now - Tuesday PM.
TPN Pressure
TPN is the liquid "food" that Liam is getting through her vein now. (Did you know that TPN stands for Total Parental Nutrition? I wonder if the Dr who prescribed it for Liam knows that beer is part of my nutrition...) Anyway, where were we? Ah yes, TPN. Part of the deal of leaving the hospital and going home is getting TPN from an independent provider. It was arranged to be delivered Monday afternoon. But 3-5 somehow became 5-7 and that somehow became 7-8. At 8 they still didn't show up. By that time Liam was already 2 hours with no TPN. Not the end of the world, but scary. What if they don't show up at all, I asked. We will have to admit her back to the hospital, was the answer. Otherwise she'd dehydrate.
Eventually they arrived sometimes after 8. Happy ending. But it gives just one example of the many many administrative stuff Rachel has to deal with - that on TOP of taking care of Liam herself. The administrative stuff includes TPN, staffing nurses, ordering-getting medications, dealing with medical equipment, and probably a few other items I'm not even aware of (not my fault, of course, as they don't explain this kind of stuff during golf events).
Definition of Courage
I already mentioned Superwoman, but I can never emphasize it enough. While she was getting ready to take Liam to dialysis yesterday, Rachel said "who knows...maybe a good dialysis would turn things around." And so it was, eventually. But how many of us would be so open minded and so composed - especially when put under so much pressure?
So what is courage? Examples might include going to battle knowing you might get hurt; or jumping off a cliff; or trying to start a new business. To me, though, courage is when you make tough decisions for somebody else, when you're taking full responsibility, and when you're ready to deal with the consequences - all while cushioning it with thick layers of love and care and softness so that people wouldn't confuse it with courage. Superwoman has it all.
(Of course, courage is also to watch golf and yell 'hey Rachel, where's my beer?')
The thin line between being a parent and a care giver
The hands are wearing latex gloves and doing work while the mouth kisses and says words of comfort. Even though we've been doing it for years, it was increases exponentially recently. Even though we're used to it so much, sometimes it still feels strange (especially after coming back from the hospital). You see, I'm the FUN dad, the entertainer. Liam and I watch golf and "drink beer" and tell jokes and read Frog & Toad together. I'm not a nurse-daddy, right? Nope, wrong. The borders between being a parent and a care giver are getting fuzzy and blurry sometimes. One minute I'm [trying to be] funny; the next I'm an assistant nurse; one minute I'm Toad, the next I'm cleaning and draining and adjusting. And you have to do it all so that Liam will feel that after all is said and done you're DAD first and foremost.
Liam's home since Saturday. The first 2 1/2 days were a nightmare. She screamed out of pain. Fortunately, this pain was controllable with meds (unlike those nights in the hospital when nothing helped). Unfortunately, when she wasn't in pain she was asleep. To be honest, if it was up to me alone, we would still be in the hospital. Liam started showing "bad signs" of "something" on Friday night in the hospital. There was no fever and all the rest of the vital signs were well. But there was pain, pain, pain. I'm too much of a chicken to take her home like this. But Rachel is truly Superwoman. She's scared of nothing. So we didn't get much sleep Saturday night.
Then, sensing that our life is too easy, AT&T disabled our DSL just like that (it turns out that they have an official policy to be SOB's - for real....they quietly and secretly changing the modem access password without letting the customer know....when you get stuck and call them - after spending 30 minutes on hold, they share the new pas word). Even after the password issue was resolved it turned out there are some physical problems with our Internet line.
What does all of that has to do with Liam? Well, it doesn't, except for the fact that we have so much shit going on that when something like that happens it just pushes you over the edge.
Relief:
Monday morning continued to be rough, just like the night before. When they left for dialysis Liam was still uncomfortable. Rachel loaded the hospital-ready bag just in case they would stay in TICU. But when Liam returned home she was so much better. Not complaining any more, very quite, not requiring pain medication. Monday night was quite too. And this is where she is right now - Tuesday PM.
TPN Pressure
TPN is the liquid "food" that Liam is getting through her vein now. (Did you know that TPN stands for Total Parental Nutrition? I wonder if the Dr who prescribed it for Liam knows that beer is part of my nutrition...) Anyway, where were we? Ah yes, TPN. Part of the deal of leaving the hospital and going home is getting TPN from an independent provider. It was arranged to be delivered Monday afternoon. But 3-5 somehow became 5-7 and that somehow became 7-8. At 8 they still didn't show up. By that time Liam was already 2 hours with no TPN. Not the end of the world, but scary. What if they don't show up at all, I asked. We will have to admit her back to the hospital, was the answer. Otherwise she'd dehydrate.
Eventually they arrived sometimes after 8. Happy ending. But it gives just one example of the many many administrative stuff Rachel has to deal with - that on TOP of taking care of Liam herself. The administrative stuff includes TPN, staffing nurses, ordering-getting medications, dealing with medical equipment, and probably a few other items I'm not even aware of (not my fault, of course, as they don't explain this kind of stuff during golf events).
Definition of Courage
I already mentioned Superwoman, but I can never emphasize it enough. While she was getting ready to take Liam to dialysis yesterday, Rachel said "who knows...maybe a good dialysis would turn things around." And so it was, eventually. But how many of us would be so open minded and so composed - especially when put under so much pressure?
So what is courage? Examples might include going to battle knowing you might get hurt; or jumping off a cliff; or trying to start a new business. To me, though, courage is when you make tough decisions for somebody else, when you're taking full responsibility, and when you're ready to deal with the consequences - all while cushioning it with thick layers of love and care and softness so that people wouldn't confuse it with courage. Superwoman has it all.
(Of course, courage is also to watch golf and yell 'hey Rachel, where's my beer?')
The thin line between being a parent and a care giver
The hands are wearing latex gloves and doing work while the mouth kisses and says words of comfort. Even though we've been doing it for years, it was increases exponentially recently. Even though we're used to it so much, sometimes it still feels strange (especially after coming back from the hospital). You see, I'm the FUN dad, the entertainer. Liam and I watch golf and "drink beer" and tell jokes and read Frog & Toad together. I'm not a nurse-daddy, right? Nope, wrong. The borders between being a parent and a care giver are getting fuzzy and blurry sometimes. One minute I'm [trying to be] funny; the next I'm an assistant nurse; one minute I'm Toad, the next I'm cleaning and draining and adjusting. And you have to do it all so that Liam will feel that after all is said and done you're DAD first and foremost.
Sunday, August 1, 2010
Liam is home
My Spin For Kids campaign. Thank you.
It's not that she's so much better from the hospital - only that there's nothing they do that we can't do at home. Right now she's mostly asleep and moaning - between pain control medication. At this point no nursing service is available so it will be a difficult week - if they don't provide help.
Earlier this week, still in the hospital and when the situation was better, I wrote:
Small victories
Perspective
It's late in the evening. Liam moans, but it's not too bad. We read a book together. She recognizes my voice and the book and immediately her eyes shine and her face shows interest. She participates in the reading by completing each line. She memorized the entire book - several of them, to be accurate.
The nurses arrive to cath' her. Usually this is a part where she'd complain more and tense her body - understandably (who in their right mind like it when others access their most private areas???) - which makes it so much more difficult for them to do their job. This time, however, she could care less. She's feeling well and reading the book and jokes. The nurses can't believe it.
And I'm thinking: This girl has all the reasons in the world to be bitter and upset and frustrated. For months now her entire world is in bed or in a hospital room. She "lives" (the little of it) in between pain control medications. Foreign people touch here everywhere. Her entire rich life miniaturized to the confinement of her hospital bed. Yet, she still finds happiness and joy in the small things. She doesn't ask questions. She doesn't speculate "what if". She doesn't look at the grass on the other side of the fence. She simply lives the moment and get the best out of it. How simple. And if it's so simple for her, with all the hardship she's going through, how come it's so difficult for the rest of us to do?
It's not that she's so much better from the hospital - only that there's nothing they do that we can't do at home. Right now she's mostly asleep and moaning - between pain control medication. At this point no nursing service is available so it will be a difficult week - if they don't provide help.
Earlier this week, still in the hospital and when the situation was better, I wrote:
Small victories
- Liam feels better.
- She asks to eat.
- She talks and jokes.
- They were able to correct the problem with the "purple line", the TPN one (which is located between the Red and Blue dialysis lines. Previously, even though this line was ok one way (in) so she was able to receive her TPN supply, they weren't able to draw out of it - to check her blood. As a result, every time they needed blood, they stuck a needle.)
Perspective
It's late in the evening. Liam moans, but it's not too bad. We read a book together. She recognizes my voice and the book and immediately her eyes shine and her face shows interest. She participates in the reading by completing each line. She memorized the entire book - several of them, to be accurate.
The nurses arrive to cath' her. Usually this is a part where she'd complain more and tense her body - understandably (who in their right mind like it when others access their most private areas???) - which makes it so much more difficult for them to do their job. This time, however, she could care less. She's feeling well and reading the book and jokes. The nurses can't believe it.
And I'm thinking: This girl has all the reasons in the world to be bitter and upset and frustrated. For months now her entire world is in bed or in a hospital room. She "lives" (the little of it) in between pain control medications. Foreign people touch here everywhere. Her entire rich life miniaturized to the confinement of her hospital bed. Yet, she still finds happiness and joy in the small things. She doesn't ask questions. She doesn't speculate "what if". She doesn't look at the grass on the other side of the fence. She simply lives the moment and get the best out of it. How simple. And if it's so simple for her, with all the hardship she's going through, how come it's so difficult for the rest of us to do?
Wednesday, July 28, 2010
Antibiotic United - Bacteria Devils 1-0
My Spin For Kids campaign. Thank you.
GOOOOOOOOOLLLLLLLLLLLLLLLLLLLLL!!!! GOL, GOL, GOL, GOL, GOL, GOL DE United!
It was a tough game against a stubborn opponent that wouldn't go away, but eventually our boys scored the deciding goal in the closing minutes of the match. We told so much about the bacteria and infection, so it's only fair that we should update that the infection is gone. Liam feels better for the past few days. All vital signs are better and even normal. She requires a lot less pain control medication. As usual, it takes Liam just minutes to fall into the hole and two weeks to climb back out.
Ok, she's sleeping comfortably right next to me so time to hit the hay. Never know how the night will turn.
GOOOOOOOOOLLLLLLLLLLLLLLLLLLLLL!!!! GOL, GOL, GOL, GOL, GOL, GOL DE United!
It was a tough game against a stubborn opponent that wouldn't go away, but eventually our boys scored the deciding goal in the closing minutes of the match. We told so much about the bacteria and infection, so it's only fair that we should update that the infection is gone. Liam feels better for the past few days. All vital signs are better and even normal. She requires a lot less pain control medication. As usual, it takes Liam just minutes to fall into the hole and two weeks to climb back out.
Ok, she's sleeping comfortably right next to me so time to hit the hay. Never know how the night will turn.
Sunday, July 25, 2010
The Perfect Storm
My Spin For Kids campaign. Thank you.
Saturday was a good day for Liam. As the Drs were discussing different strategies to treat her multiple infections and the complication with the TPN line, Liam started feeling better already. She talked a bit, smiled a bit, even went outside.
However, the night between Saturday and Sunday was not good. It was not as bad as the worst nights we had together, but was still unrestful (calm down.....even though my spell checker flags "unrestful", it turns out it IS a valid word). She didn't sleep much - only cat naps here or there - moaning all night long. Nothing helped her: no medication, no change in position, no change in entertainment.
Then, at 4:30-ish AM, things started to intensify a bit. Just then, wouldn't you know it, I received a call from work which required me to be on the phone-computer for the next 2 hours - after a sleepless night and with Liam needing me. That was difficult, frustrating, stressful (even though I'm on call, Rachel got the night off as she needed the rest to take Meitav to camp....we gambled that I wouldn't get a call and we lost).
And this is where we're at on Sunday morning. Moaning out of a shallow sleep.
Saturday was a good day for Liam. As the Drs were discussing different strategies to treat her multiple infections and the complication with the TPN line, Liam started feeling better already. She talked a bit, smiled a bit, even went outside.
However, the night between Saturday and Sunday was not good. It was not as bad as the worst nights we had together, but was still unrestful (calm down.....even though my spell checker flags "unrestful", it turns out it IS a valid word). She didn't sleep much - only cat naps here or there - moaning all night long. Nothing helped her: no medication, no change in position, no change in entertainment.
Then, at 4:30-ish AM, things started to intensify a bit. Just then, wouldn't you know it, I received a call from work which required me to be on the phone-computer for the next 2 hours - after a sleepless night and with Liam needing me. That was difficult, frustrating, stressful (even though I'm on call, Rachel got the night off as she needed the rest to take Meitav to camp....we gambled that I wouldn't get a call and we lost).
And this is where we're at on Sunday morning. Moaning out of a shallow sleep.
Saturday, July 24, 2010
Plumbing 202 combined with anatomy 305
My Spin For Kids campaign. Thank you.
Since the loyal reader might have been soooo board by this blog, we decided to spice things up a bit.
The infection in the dialysis lines is also in the TPN line. Strangely, fluids are flowing from the outside in (which is the important direction), but for some reason they can't draw blood out from this line - something they want to do to understand the infection better. Anyway, about the damn infection: To my understanding (DUH, this entire blog is "to my understanding". You're stuck with me...) the bacteria sticks to the inside of the lead lines and the blood vessels. The antibiotic-Drano should clean it out. In order for the Drano to treat the body efficiently, first the lead lines must be cleaned. Now, the dialysis Blue and Red lines can be "locked" (plugged) with the antibiotic. The antibiotic just sits there, eating the bacteria off of the plastic lines. When it's time for dialysis, they unplug, pull the antibiotic out (so she wouldn't get too much of it), and do the dialysis. When it's done, they re-plug. That's the "easy" part. The complication comes with the Purple TPN line. Since they cannot draw out of this line, they can't lock it either. If they lock it as described above, without the ability to draw some antibiotic back out, then she'll have too much in her body. So instead they just keep giving her antibiotic in a regulated rate so that her body will get some but not too much. The hope is that the bacteria will be killed that way.
This is where the efforts are focused on now. Different Drs have different theories (and thus different strategies) and they all talk to agree on a unified approach. It will take a few days, I'm told, until they will know something definitive about the infection.
Meanwhile it looks like we have some improvement - as of Saturday. Liam had a restful night (Fri-Sat) and she's having a quite day. We even see some brief smiles here and there. We went out to the garden on her wheelchair. She's sleeping a lot, which is very typical of her every time she recovers from something. She doesn't need the heavy-guns pain medication too much.
Keep your fingers crossed.
Since the loyal reader might have been soooo board by this blog, we decided to spice things up a bit.
The infection in the dialysis lines is also in the TPN line. Strangely, fluids are flowing from the outside in (which is the important direction), but for some reason they can't draw blood out from this line - something they want to do to understand the infection better. Anyway, about the damn infection: To my understanding (DUH, this entire blog is "to my understanding". You're stuck with me...) the bacteria sticks to the inside of the lead lines and the blood vessels. The antibiotic-Drano should clean it out. In order for the Drano to treat the body efficiently, first the lead lines must be cleaned. Now, the dialysis Blue and Red lines can be "locked" (plugged) with the antibiotic. The antibiotic just sits there, eating the bacteria off of the plastic lines. When it's time for dialysis, they unplug, pull the antibiotic out (so she wouldn't get too much of it), and do the dialysis. When it's done, they re-plug. That's the "easy" part. The complication comes with the Purple TPN line. Since they cannot draw out of this line, they can't lock it either. If they lock it as described above, without the ability to draw some antibiotic back out, then she'll have too much in her body. So instead they just keep giving her antibiotic in a regulated rate so that her body will get some but not too much. The hope is that the bacteria will be killed that way.
This is where the efforts are focused on now. Different Drs have different theories (and thus different strategies) and they all talk to agree on a unified approach. It will take a few days, I'm told, until they will know something definitive about the infection.
Meanwhile it looks like we have some improvement - as of Saturday. Liam had a restful night (Fri-Sat) and she's having a quite day. We even see some brief smiles here and there. We went out to the garden on her wheelchair. She's sleeping a lot, which is very typical of her every time she recovers from something. She doesn't need the heavy-guns pain medication too much.
Keep your fingers crossed.
Wednesday, July 21, 2010
Out of PICU and back into TICU
My Spin For Kids campaign. Thank you.
TICU is Liam's "regular" floor. Her blood pressure is not in dangerous range any longer, so there was no justification to stay in PICU. Last night was so-so. When she was drugged out, she slept comfortably. When the meds wore off, she screamed. That's basically how she is now. She has two infections: UTI and in the dialysis lead lines. We will know more about them in the next few days as they grow in the lab and analyzed.
TICU is Liam's "regular" floor. Her blood pressure is not in dangerous range any longer, so there was no justification to stay in PICU. Last night was so-so. When she was drugged out, she slept comfortably. When the meds wore off, she screamed. That's basically how she is now. She has two infections: UTI and in the dialysis lead lines. We will know more about them in the next few days as they grow in the lab and analyzed.
Tuesday, July 20, 2010
Back in the PICU
My Spin For Kids campaign. Thank you.
Liam was moved to PICU - the "serious" ICU (new building, flower elevators, 4th floor). PICU, for those who have short memory, like me, is where only 3 are allowed in the room at one time, you MUST WASH YOUR HANDS before entering the secretary-controlled door. The reasons for the move are:
About the infection:
Liam has a very weak and vulnerable immune system. Every time she's hooked up to the dialysis machine, the risk goes up; every time she's being cath'd, the risk go up; every time we pet her and kiss her, the risk goes up.
Therefor: FROM NOW ON, ANYBODY WHO VISITS LIAM MUST WASH THEIR HANDS THOROUGHLY - whether at home or the hospital. TRY NOT TO KISS HER OR TOUCH HER MORE THAN NECESSARY, PLEASE. At the same time, we still want her to feel the love that surrounds her. Thanks for the cooperation.
Liam was moved to PICU - the "serious" ICU (new building, flower elevators, 4th floor). PICU, for those who have short memory, like me, is where only 3 are allowed in the room at one time, you MUST WASH YOUR HANDS before entering the secretary-controlled door. The reasons for the move are:
- An infection was discovered in her dialysis lines.
- Her blood pressure was too low (but got better since she got into PICU).
- She had high fever.
About the infection:
Liam has a very weak and vulnerable immune system. Every time she's hooked up to the dialysis machine, the risk goes up; every time she's being cath'd, the risk go up; every time we pet her and kiss her, the risk goes up.
Therefor: FROM NOW ON, ANYBODY WHO VISITS LIAM MUST WASH THEIR HANDS THOROUGHLY - whether at home or the hospital. TRY NOT TO KISS HER OR TOUCH HER MORE THAN NECESSARY, PLEASE. At the same time, we still want her to feel the love that surrounds her. Thanks for the cooperation.
Monday, July 19, 2010
Back in the hospital
My Spin For Kids campaign. Thank you.
Written on Sunday AM:
We're now 9 days outside the hospital. The start was sort of rough. Liam swung sharply between feeling lousy and better. But since then things seems to stabilize a bit. The situation is still extremely complex and most likely to stay that way. But within the big, chaotic, confusing picture, it seems that we found a little piece of peacefulness. Not without pain; not without vomiting; not without OOOOWWWWies. But right next to them also periods of feeling good, of smiling. It's written based on the experience of only a few days, so take every word with a serious grain of salt.
Most importantly: When there were problems, we (we as in "Rachel") were able to control them.
Two days ago Liam didn't feel great, to put it mildly. She vomited and complained about not feeling well. Since nothing we tried worked and there was nothing to lose, we put her in her wheelchair and went outside. the minute she felt the hot air she started smiling. The vomiting stopped at once. And she remained comfortable for the rest of the night. But sometimes as soon as she gets outside she immediately ask to return to her bed. And usually at this times it means she would need some kind of pain control medication.
So all in all we experienced a pretty nice weekend so far - with rest, and bike, and friends, and beer. Nothing special, right? Just an ordinary weekend. But we didn't experience such weekend in a llllloooooonnnnnggggg time.
But then came Sunday afternoon:
Liam started not feeling well around 4-5 PM. Go outside Liam? Yes. But she asked to return to her bad immediately. From there things deteriorated rapidly. Within a very short time Liam was screaming out of pain. And just like that the wonderful weekend went down the drain. All the stress returned at one.
By that time we already arranged for dinner. Now, meal time is a sort of down time, pleasure, if you will. But how can you enjoy it (or eat at all, for that matter) when she's screaming right next to you? So we kicked everybody outside to the porch, with one volunteer staying with Liam. Sitting on the porch, we could still hear her screaming. But by now, after a year of doing it, we're sort of used to it, which is terrible, if you think about it.
The night between Sunday and Monday was not great. Liam would get temporary relief after the pain medication was given, but returned to discomfort in between. On Monday morning she spiked a very high fever, which is also true for the time of this writing (Monday night). Her fever actually continued to climb during the day.
Liam went to the hospital on Monday for her regularly scheduled dialysis. But after they saw her they decided to keep her for 24-48 hours for observation. The last time such sentence was said we stayed for a month.
We're now 9 days outside the hospital. The start was sort of rough. Liam swung sharply between feeling lousy and better. But since then things seems to stabilize a bit. The situation is still extremely complex and most likely to stay that way. But within the big, chaotic, confusing picture, it seems that we found a little piece of peacefulness. Not without pain; not without vomiting; not without OOOOWWWWies. But right next to them also periods of feeling good, of smiling. It's written based on the experience of only a few days, so take every word with a serious grain of salt.
Most importantly: When there were problems, we (we as in "Rachel") were able to control them.
Two days ago Liam didn't feel great, to put it mildly. She vomited and complained about not feeling well. Since nothing we tried worked and there was nothing to lose, we put her in her wheelchair and went outside. the minute she felt the hot air she started smiling. The vomiting stopped at once. And she remained comfortable for the rest of the night. But sometimes as soon as she gets outside she immediately ask to return to her bed. And usually at this times it means she would need some kind of pain control medication.
So all in all we experienced a pretty nice weekend so far - with rest, and bike, and friends, and beer. Nothing special, right? Just an ordinary weekend. But we didn't experience such weekend in a llllloooooonnnnnggggg time.
But then came Sunday afternoon:
Liam started not feeling well around 4-5 PM. Go outside Liam? Yes. But she asked to return to her bad immediately. From there things deteriorated rapidly. Within a very short time Liam was screaming out of pain. And just like that the wonderful weekend went down the drain. All the stress returned at one.
By that time we already arranged for dinner. Now, meal time is a sort of down time, pleasure, if you will. But how can you enjoy it (or eat at all, for that matter) when she's screaming right next to you? So we kicked everybody outside to the porch, with one volunteer staying with Liam. Sitting on the porch, we could still hear her screaming. But by now, after a year of doing it, we're sort of used to it, which is terrible, if you think about it.
The night between Sunday and Monday was not great. Liam would get temporary relief after the pain medication was given, but returned to discomfort in between. On Monday morning she spiked a very high fever, which is also true for the time of this writing (Monday night). Her fever actually continued to climb during the day.
Liam went to the hospital on Monday for her regularly scheduled dialysis. But after they saw her they decided to keep her for 24-48 hours for observation. The last time such sentence was said we stayed for a month.
Thursday, July 15, 2010
Onion and honey philosophy
My Spin For Kids campaign. Thank you.
When times are tough she never gets tired. She pulls everybody with her: Liam, the Drs, nurses, and the rest of us. She tirelessly looking how to make things better.
And when things are a bit better, she doesn't let go. Most of us would stop to catch our breath. Not Rachel. She continues to move forward to the next target.
For example, when Liam finally felt better for a day or two, this is where I thought "let's stay here (at the hospital) until we see some stability." But Rachel was already moving on: we have to try and go home. When she said that she knew it will be double the work and the responsibility. I, the macho Israeli soldier, would pee in my pants out of fear in such situation. It's tough to take care of Liam at home. There's so much to know, so much to do, so much responsibility - not to mention just to be there for Liam when she's suffering (a full time job on its own). But Rachel's approach? Bring it on. Amazing.
Oy Vey, where did she come from?
Me: Meitav, I want you to know how proud of you I am. You matured a lot recently. You're taking care of yourself and you help us a lot.
Meitav: Thanks.
Me: Having said that, I'm letting you know that if the house is empty when you wake up, know that I went for a bike ride before it gets too hot.
Meitav: Ok, but please leave me a note.
Me: Here, I just told you. No note is necessary.
She, who inherited so much from me: No, no. Leave me a note that you left and that soon you'll be back and that you love me.
And then, with a tone and a look definitely not from my side of the family, she adds: AND DON'T FORGET THE "I LOVE YOU PART".
Philosophy and religion
October 2009 was an emotional roller-coaster month for me. Liam's ordeal was still pretty new and I was just coming out of a long unemployment period after a difficult separation from the company I loved working for. One day, while driving, I heard that Leonard Cohen is coming to the Fox. I needed little persuasion. As soon as the tickets became public, I was at the Fox box office to get two (but me being the frugal me and the tickets being sooooo expensive and the members snatching all the good ones, i ended up buying two for the balcony).
Now, I heard of LC before and I liked playing his music, but I was never crazy about him. Ok-plus is the grade he got. But the more I watched clips of the 75 years old on youtube, the more I wanted to see him live. I didn't go to a live concert in years. Was going now, when Liam is like that, the right time? The night of the concert came. Rachel could not join me as Liam just returned home after a shunt surgery (I think it was all a plot....Rachel tried to get out of this before...oh well). I sold the other ticket outside and went in.
I sat there in the top section, away from the stage, and near a bunch of strangers - all of whom were really nice. The concert started and for some reason I got so excited I got goosebumps. But something was missing - beside Rachel. I knew immediately what it was. My hawk eyes started scanning. And then I spotted him right below the stage: shiny head with a white T-shirt. At intermission I made my move. Are these seats next to you taken? No? Ok, thanks. (I call this procedure, which I also do in ball parks, the
"Asher D
O
W
Ngrade".)
The goosebumps I got upstairs were nothing compared with what I experienced in my new ($300) seats. I didn't think of anything but the music and the lyrics. I was completely taken. I think I was shaking out of emotions. I could tell you that it was Leonard's magical voice, and the capturing words, and the just incredible show altogether. And that might have been the case. Everything seemed to drain to a single point, a nipple: Liam's uncertain condition, getting a new job after the long layoff, Cohen's voice, and the classic Spanish guitar. It was amazing. My words can't explain what I felt there. I took extra caution in the 10 minutes drive home after the concert. My head was still spinning.
When I told Rachel what happened to me she said I went through a religious experience. The answer is better put in Cohen's own words: "I...studied the philosophies and the religions, but cheerfulness came breaking through."
(It's true though, that no experience is ever that wonderful if you have nobody to share it with. I remember the days that I used to windsurf. Even surfing in the perfect conditions, but alone, never matched sitting on the beach after a just-ok surf and sharing it with the other guys.)
Back to the present
Readers asked: (loosely translated from Hebrew)
Here's a piece of "routine" life for you (the Vilensky's reality show...live and in 3-D):
Morning. A knock on the door. A good neighbor brings Rachel a cup of coffee. The two are standing and chatting. Suddenly, sounds of vomiting coming from Liam's bed. Here, hold my coffee please - and she's on the run to help Liam. Then the conversation resumes from next to Liam. The suction hose in one hand, coffee in the other.
But really, it doesn't matter how long or impressive the list might be. There's no way I can describe in words what it means to care for Liam. One has to experience it personally to fully understand it. Even some of our closest friends and family have no way of truly knowing what it's like.
Broken medical equipment
I discovered that ALL the weigh scales in the hospital - all of them without an exception - are broken. They all seem to show numbers too high. Strange....
Liam's at home since last Saturday. She swings between periods pf feeling pretty well (but rarely excellent, like her old self) to periods where she's feeling not great, but not absolutely miserable either. When we first brought her home on Saturday she had a good day, but then a not-that-great night. Since then it sort of followed similar patterns. In Arabic the expression is "Yoom Asal Yoom Bassal" - One day honey, one day onion.
At home now, even though we have some nursing help, on the days we don't and after hours, Rachel is the nurse and the Dr and the tech and mom.
And, speaking of the devil....
It doesn't matter how many times I mentioned it already, I'm always finding my self amazed again at how well Rachel leads this entire war. She's the commander in chief who pulls all the strings together, but she's also a field officer who consult with the generals (Drs) on strategics; and she's also the foot soldier (nurse) who needs supplies and do the fighting. And above all she's mom. When times are tough she never gets tired. She pulls everybody with her: Liam, the Drs, nurses, and the rest of us. She tirelessly looking how to make things better.
And when things are a bit better, she doesn't let go. Most of us would stop to catch our breath. Not Rachel. She continues to move forward to the next target.
For example, when Liam finally felt better for a day or two, this is where I thought "let's stay here (at the hospital) until we see some stability." But Rachel was already moving on: we have to try and go home. When she said that she knew it will be double the work and the responsibility. I, the macho Israeli soldier, would pee in my pants out of fear in such situation. It's tough to take care of Liam at home. There's so much to know, so much to do, so much responsibility - not to mention just to be there for Liam when she's suffering (a full time job on its own). But Rachel's approach? Bring it on. Amazing.
Oy Vey, where did she come from?
Me: Meitav, I want you to know how proud of you I am. You matured a lot recently. You're taking care of yourself and you help us a lot.
Meitav: Thanks.
Me: Having said that, I'm letting you know that if the house is empty when you wake up, know that I went for a bike ride before it gets too hot.
Meitav: Ok, but please leave me a note.
Me: Here, I just told you. No note is necessary.
She, who inherited so much from me: No, no. Leave me a note that you left and that soon you'll be back and that you love me.
And then, with a tone and a look definitely not from my side of the family, she adds: AND DON'T FORGET THE "I LOVE YOU PART".
Philosophy and religion
October 2009 was an emotional roller-coaster month for me. Liam's ordeal was still pretty new and I was just coming out of a long unemployment period after a difficult separation from the company I loved working for. One day, while driving, I heard that Leonard Cohen is coming to the Fox. I needed little persuasion. As soon as the tickets became public, I was at the Fox box office to get two (but me being the frugal me and the tickets being sooooo expensive and the members snatching all the good ones, i ended up buying two for the balcony).
Now, I heard of LC before and I liked playing his music, but I was never crazy about him. Ok-plus is the grade he got. But the more I watched clips of the 75 years old on youtube, the more I wanted to see him live. I didn't go to a live concert in years. Was going now, when Liam is like that, the right time? The night of the concert came. Rachel could not join me as Liam just returned home after a shunt surgery (I think it was all a plot....Rachel tried to get out of this before...oh well). I sold the other ticket outside and went in.
I sat there in the top section, away from the stage, and near a bunch of strangers - all of whom were really nice. The concert started and for some reason I got so excited I got goosebumps. But something was missing - beside Rachel. I knew immediately what it was. My hawk eyes started scanning. And then I spotted him right below the stage: shiny head with a white T-shirt. At intermission I made my move. Are these seats next to you taken? No? Ok, thanks. (I call this procedure, which I also do in ball parks, the
"Asher D
O
W
Ngrade".)
The goosebumps I got upstairs were nothing compared with what I experienced in my new ($300) seats. I didn't think of anything but the music and the lyrics. I was completely taken. I think I was shaking out of emotions. I could tell you that it was Leonard's magical voice, and the capturing words, and the just incredible show altogether. And that might have been the case. Everything seemed to drain to a single point, a nipple: Liam's uncertain condition, getting a new job after the long layoff, Cohen's voice, and the classic Spanish guitar. It was amazing. My words can't explain what I felt there. I took extra caution in the 10 minutes drive home after the concert. My head was still spinning.
When I told Rachel what happened to me she said I went through a religious experience. The answer is better put in Cohen's own words: "I...studied the philosophies and the religions, but cheerfulness came breaking through."
(It's true though, that no experience is ever that wonderful if you have nobody to share it with. I remember the days that I used to windsurf. Even surfing in the perfect conditions, but alone, never matched sitting on the beach after a just-ok surf and sharing it with the other guys.)
Back to the present
Readers asked: (loosely translated from Hebrew)
Is life at home has any routine now? Is it back to "normal" somehow?
No. We don't know what routine life is for the past year - at least. Everything is dynamic all the time. Liam is in pain and Liam is asleep on her own schedule. Here's a piece of "routine" life for you (the Vilensky's reality show...live and in 3-D):
Morning. A knock on the door. A good neighbor brings Rachel a cup of coffee. The two are standing and chatting. Suddenly, sounds of vomiting coming from Liam's bed. Here, hold my coffee please - and she's on the run to help Liam. Then the conversation resumes from next to Liam. The suction hose in one hand, coffee in the other.
What does it really mean to care for Liam at home?
Hmmm, the $64M question. Not sure where to begin from. Here are some items which are easy to list:- Prepare medication at set times - including the middle of the night.
- Cath her several times a day - including the middle of the night.
- Change positions for Liam - including the middle of the night.
- Prepare her TPN ("food").
- Take her out of bed and into the wheelchair; and back to bed.
- Clean her up when needed (a short sentence that fails to describe the work involved).
- Keep in touch with Drs, nurses, medical equipment company, nurses provider, and a million other entities I have no idea who they are. It's a day job on it's own - no joke.
- Being mom. Spend half the night with Liam. 24x7x365.
But really, it doesn't matter how long or impressive the list might be. There's no way I can describe in words what it means to care for Liam. One has to experience it personally to fully understand it. Even some of our closest friends and family have no way of truly knowing what it's like.
Do you and Rachel have some time for yourself (biking, yoga, etc.)?
If there's a [reliable] nurse in the house, yes. Otherwise one of us has to be here at all times. Broken medical equipment
I discovered that ALL the weigh scales in the hospital - all of them without an exception - are broken. They all seem to show numbers too high. Strange....
Saturday, July 10, 2010
Liam is home
My Spin For Kids campaign. Thank you.
Saturday: Earlier today Liam was discharged from the hospital. As of Saturday night, she's 24 hours now with no pain and in good mood.
Ironically, when Liam was ready to be discharged - on Friday PM, none of the providers was. Let me explain: Preparing for Liam to be at home is a complex operation.
To make a long story - no really, a really long story - short, somehow things worked out. As told above, we brought Liam home on Saturday AM.
Beyond the news:
How do you feel, Liam?
When everybody pets you?
And kiss you? (which makes me want to cleanse you before I kiss you to stay away from their germs.)
And when they flip you over?
And when they roll you this way and that?
And when they undress you?
And clean you?
And everybody touching you whereever they want?
And they stick you?
And poke you?
And when you're too weak to even raise your hand to scratch your face?
Or too weak to tell people to get the hell out of your face?
How do you feel?
Saturday: Earlier today Liam was discharged from the hospital. As of Saturday night, she's 24 hours now with no pain and in good mood.
Ironically, when Liam was ready to be discharged - on Friday PM, none of the providers was. Let me explain: Preparing for Liam to be at home is a complex operation.
- Private providers have to deliver medicine "pump" - an electronic way to squeeze a syringe really slow into the leadline (the line that goes into her vein).
- They need to train us in using the device.
- Another delivery is for the TPN - the "food" stuff that goes also into the same leadline.
- Nursing service has to be scheduled and put into place.
To make a long story - no really, a really long story - short, somehow things worked out. As told above, we brought Liam home on Saturday AM.
Beyond the news:
How do you feel, Liam?
When everybody pets you?
And kiss you? (which makes me want to cleanse you before I kiss you to stay away from their germs.)
And when they flip you over?
And when they roll you this way and that?
And when they undress you?
And clean you?
And everybody touching you whereever they want?
And they stick you?
And poke you?
And when you're too weak to even raise your hand to scratch your face?
Or too weak to tell people to get the hell out of your face?
How do you feel?
Tuesday, July 6, 2010
Improvement
My Spin For Kids campaign. Thank you.
There was a great improvement in Liam's condition since that terrible Saturday night. Gradually the pain-discomfort subsided. She needed less and less pain control meds. Today she's very quite, but more awake than the last few days. She spent a bunch of time outside in the garden, despite the heat. We always tried to get her out of the room to change the atmosphere. But in the past 2 weeks or so it wasn't always easy. As she got into her wheelchair, pain returned. Well, somebody came up with the idea of putting her on a stretcher. You know, those temporary beds they use in the ER and such. And so we did. Somebody got the stretcher. We took Liam out for the first time two days ago, when she was still in pain. It wasn't easy and she still complained about pain in the garden. But as we sat there for a while she relaxed and fell asleep - until we wheeled her back in.
Yesterday, as soon as she felt the warm sun on her face, the famous, infecting smile came out. No hesitation. Our photographer was ready, of course. (Don't want to sound like the party pooper, but as we saw with Liam so many times before, things could change bitter in a matter of seconds. Nevertheless, we're enjoying it now.)
There was a great improvement in Liam's condition since that terrible Saturday night. Gradually the pain-discomfort subsided. She needed less and less pain control meds. Today she's very quite, but more awake than the last few days. She spent a bunch of time outside in the garden, despite the heat. We always tried to get her out of the room to change the atmosphere. But in the past 2 weeks or so it wasn't always easy. As she got into her wheelchair, pain returned. Well, somebody came up with the idea of putting her on a stretcher. You know, those temporary beds they use in the ER and such. And so we did. Somebody got the stretcher. We took Liam out for the first time two days ago, when she was still in pain. It wasn't easy and she still complained about pain in the garden. But as we sat there for a while she relaxed and fell asleep - until we wheeled her back in.
Yesterday, as soon as she felt the warm sun on her face, the famous, infecting smile came out. No hesitation. Our photographer was ready, of course. (Don't want to sound like the party pooper, but as we saw with Liam so many times before, things could change bitter in a matter of seconds. Nevertheless, we're enjoying it now.)
Monday, July 5, 2010
Spin for kids
Once a year I'm participating in a fundraiser which raises money for the FOCUS organization to send kids of all abilities to summer camp at Camp Twin Lakes - just outside of Atlanta. As a FOCUS family we spent a weekend at Camp Twin Lakes several times. The girls had a blast - for real (and I enjoyed, oh how much I enjoyed, sharing a cabin with other dads/moms...the snoring...sharing the facilities...I just can't wait to return...). This year, we won't be able to join due to Liam's condition. But there are other kids and families, which Camp Twin Lakes provides a unique and only opportunity for them to ever participate in a summer camp. I'm really a poor ambassador. Please read more on the Camp Twin Lakes site.
The fundraiser is called Spin For Kids. This is a fun ride for all levels, AND you get to raise money to a worthy cause. It would be great if you join me and team FOCUS for the ride (although I'm warning you that I'm a really slow rider). If you can't, I would appreciate your contribution for this important cause.
To help me raise funds, please follow this link.
Many thanks.
Asher
The fundraiser is called Spin For Kids. This is a fun ride for all levels, AND you get to raise money to a worthy cause. It would be great if you join me and team FOCUS for the ride (although I'm warning you that I'm a really slow rider). If you can't, I would appreciate your contribution for this important cause.
To help me raise funds, please follow this link.
Many thanks.
Asher
Sunday, July 4, 2010
This is hell, THIS IS HELL
THIS IS HELL!!!
For the past 12-13-15 hours Liam is miserable. We didn't sleep all night. She's screaming and crying out of pain. They gave her everything in th world to put down an elephant. None is working. She's suffering. And it continues as I'm writing these words, Sunday AM. Shitty situation, shitty world!!!
THIS IS HELL!!!
Saturday, July 3, 2010
Swinging
Liam slept for about two weeks straight, with short periods where she woke up, OOOOWWWWW OOOWWWWW OOOOOOWWWWW, got drugs, and went back into the hole. Earlier this week she finally woke up. And immediately asked for food - non-stop: I'm hungry, I'm hungry, I'm hungry x 500000. But when we gave her little food, she either vomited it out or complained about more pain.
In order to get a clear picture of the situation, it would take Rachel to write a blog. I'm telling yall just bits and pieces that I catch as I'm coming off the bench. But, Rachel's not a writer, she's a doer, so you're stuck with me.
The reader must keep in mind that beneath the stories and the world cup and the lame humor, there's a very sick child who's struggling every second.
Last night, after I watched two world cup games and before I started my nightly shift at the hospital, we went swimming. Swimming laps, if you don't know it yet, it one of the best time to think. Your ears are plugged, your eyes are stuck on the pool's floor, and you're busy trying to get air and manage it. The mind is not busy with distractions from the outside. So as I'm swimming there and the girls are jumping from the springboard, the thoughts enter my mind: I'm having fun, watching the WC, swimming, etc., while Liam is laying there in bed only a mile away, struggling, moaning, and in pain. It was a difficult thought to process. Not sure if my eyes went wet or it was the goggles fogging.
I got out of the pool and headed to the hospital. Found Liam indeed moaning from what looks like inside her sleep. I called Rachel to get advice. The advice was decisive: give her IV Attivan. But as Liam heard me speaking to Rachel, the moaning stopped at once. She opened her eyes and was laying there very quietly and aware. Strange. And hour later it all returned and the nurse gave her the Attivan. But the same Attivan that worked so great the night before, didn't do squat now. Liam was running a fever too. An hour or two later, deep into the night, we were able to calm her down. In this experiment the Attivan-Tylenol combo did the trick. But what am I talking all this medicine talk when the WC is going on? I know too little about the former and not enough about the latter.
Liam had a few small seizures at the very end of dialysis yesterday. This might be explained by the fact that they give her Keppra, the anti-seizure medication, gradually during the week. Then the dialysis cleans it all out in a matter of hours. Indeed, they increase the doze on dialysis days. It still may not be enough. The subject is under testing.
Meanwhile they are also introducing a psychiatric drug to address maybe some anxiety. And, if nothing else, to see if Liam can be happy again. This is an oversimplification of the issue, but that is the general idea. This is still early stages.
(This is half time between Germany and Argentina, so you're getting the skinny regarding medications, etc.)
Another recent trend is that a few of the medicines that were given before via the J-tube, has stopped being absorbed. They are now giving them more through the IV. That complicates things a bit as far as discharge goes. In the past, it was a requirement that we'd be able to give all medication through the G and J tubes. Only an RN is allowed to give meds through the IV - plus, you need the special syringe pump. Well, it turns out that maybe we (again, "we" as in Rachel) can taught how to do it and we can be sent home with the equipment. This remained to be seen.
Salads
Fresh salad:
For me fresh salad is usually associated with home. The other day, in the hospital room, Rachel chopped some vegetables and prepared a wonderful salad. Home away from home, I guess.
Doctors salad:
General pediatrics, nephrologists, neurologists, GI's, pulmonologists, pain experts (who admits that when it comes to Liam, they aren't experts at all). Assortment of nurses and techs.
Medicine salad:
Not sure from where to even begin: tylenole, attivan, stadol, keppra, atirax, baclophin, neurontin, ....just to name a few. Probably spelled most of them wrong.
Salad from the Egleston cafeteria:
YAIKES, but sometimes that's the only thing there's to eat.
Salad of people in the hospital hallway:
Big, small, young, old, fat, skinny, and-all-in-between, whites, blacks, orientals, indians, etc.
Salad of sick kids:
Cancer, heart, orthopedic, etc.
Life salad:
With work, the hospital, the world cup and the rest of life, I feel chopped and sliced.
Sports salad:
The world cup, Wimbledon, golf, the Tour De France is around the corner. I'm stretched thin.
TV salad:
I'm watching the WC from wherever I can: on the computer, on Univision, at the bar, at friends, at the hospital (on a small TV with "snow"), even at work.
Saturday night mini update
Liam is swinging between being in pain and feeling good. I know she was screaming before I arrived at 7. But as she saw me she smiled and joked. She got in her wheelchair and we walked to the garden. She was in good spirit the entire time - all 10-15 minutes of it. But 5 minutes into the garden visit, pain was back. We drove back to the room, with Liam crying. After I put her back in bed she continued to swing between good mood and pain. Around 8-ish it changed to all pain. That's basically Liam. It's difficult to answer the question "how is she doing". Her condition changed by the second from black to white.
In order to get a clear picture of the situation, it would take Rachel to write a blog. I'm telling yall just bits and pieces that I catch as I'm coming off the bench. But, Rachel's not a writer, she's a doer, so you're stuck with me.
The reader must keep in mind that beneath the stories and the world cup and the lame humor, there's a very sick child who's struggling every second.
Last night, after I watched two world cup games and before I started my nightly shift at the hospital, we went swimming. Swimming laps, if you don't know it yet, it one of the best time to think. Your ears are plugged, your eyes are stuck on the pool's floor, and you're busy trying to get air and manage it. The mind is not busy with distractions from the outside. So as I'm swimming there and the girls are jumping from the springboard, the thoughts enter my mind: I'm having fun, watching the WC, swimming, etc., while Liam is laying there in bed only a mile away, struggling, moaning, and in pain. It was a difficult thought to process. Not sure if my eyes went wet or it was the goggles fogging.
I got out of the pool and headed to the hospital. Found Liam indeed moaning from what looks like inside her sleep. I called Rachel to get advice. The advice was decisive: give her IV Attivan. But as Liam heard me speaking to Rachel, the moaning stopped at once. She opened her eyes and was laying there very quietly and aware. Strange. And hour later it all returned and the nurse gave her the Attivan. But the same Attivan that worked so great the night before, didn't do squat now. Liam was running a fever too. An hour or two later, deep into the night, we were able to calm her down. In this experiment the Attivan-Tylenol combo did the trick. But what am I talking all this medicine talk when the WC is going on? I know too little about the former and not enough about the latter.
Liam had a few small seizures at the very end of dialysis yesterday. This might be explained by the fact that they give her Keppra, the anti-seizure medication, gradually during the week. Then the dialysis cleans it all out in a matter of hours. Indeed, they increase the doze on dialysis days. It still may not be enough. The subject is under testing.
Meanwhile they are also introducing a psychiatric drug to address maybe some anxiety. And, if nothing else, to see if Liam can be happy again. This is an oversimplification of the issue, but that is the general idea. This is still early stages.
(This is half time between Germany and Argentina, so you're getting the skinny regarding medications, etc.)
Another recent trend is that a few of the medicines that were given before via the J-tube, has stopped being absorbed. They are now giving them more through the IV. That complicates things a bit as far as discharge goes. In the past, it was a requirement that we'd be able to give all medication through the G and J tubes. Only an RN is allowed to give meds through the IV - plus, you need the special syringe pump. Well, it turns out that maybe we (again, "we" as in Rachel) can taught how to do it and we can be sent home with the equipment. This remained to be seen.
Salads
Fresh salad:
For me fresh salad is usually associated with home. The other day, in the hospital room, Rachel chopped some vegetables and prepared a wonderful salad. Home away from home, I guess.
Doctors salad:
General pediatrics, nephrologists, neurologists, GI's, pulmonologists, pain experts (who admits that when it comes to Liam, they aren't experts at all). Assortment of nurses and techs.
Medicine salad:
Not sure from where to even begin: tylenole, attivan, stadol, keppra, atirax, baclophin, neurontin, ....just to name a few. Probably spelled most of them wrong.
Salad from the Egleston cafeteria:
YAIKES, but sometimes that's the only thing there's to eat.
Salad of people in the hospital hallway:
Big, small, young, old, fat, skinny, and-all-in-between, whites, blacks, orientals, indians, etc.
Salad of sick kids:
Cancer, heart, orthopedic, etc.
Life salad:
With work, the hospital, the world cup and the rest of life, I feel chopped and sliced.
Sports salad:
The world cup, Wimbledon, golf, the Tour De France is around the corner. I'm stretched thin.
TV salad:
I'm watching the WC from wherever I can: on the computer, on Univision, at the bar, at friends, at the hospital (on a small TV with "snow"), even at work.
Saturday night mini update
Liam is swinging between being in pain and feeling good. I know she was screaming before I arrived at 7. But as she saw me she smiled and joked. She got in her wheelchair and we walked to the garden. She was in good spirit the entire time - all 10-15 minutes of it. But 5 minutes into the garden visit, pain was back. We drove back to the room, with Liam crying. After I put her back in bed she continued to swing between good mood and pain. Around 8-ish it changed to all pain. That's basically Liam. It's difficult to answer the question "how is she doing". Her condition changed by the second from black to white.
Saturday, June 26, 2010
My plan to win the Nobel Prize
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).
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).
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