Take it from the experts. When Liam is not doped up, she's complaining. That's how the night was. There are two possible strategies to take:
1. To be right next to her, console her, pet her, read her a story - hope she'd calm down.
2. Ignore her. Much the same as you let a stubborn crying baby cry herself to sleep. I'm laying awake in my bed and she'd complain OOOOWWWW, and "I don't feel well", and "it hurts". But gradually the g a p s i n b t w e e n the complaining grow larger and larger - until silence. But, the ultimate sign that she's finally asleep, is that the breathing count monitor alarm goes off. Ahhhh, I think to myself as sweet sleep takes over me, she's not breathing again, that means she's asleep.....and I'm drifting off to sleep....how ironic.
Sunday, January 31, 2010
Saturday, January 30, 2010
From rough water to a mirror lake
Liam went through several rough days. Constant complaining ow, ooww, oooooowwww to the degree of screaming. Once again, the blog is short of words to describe what was going on here. She was miserable. As the dear reader may recall, the risk with doping her out of pain is that she might stop breathing. At some point yesterday, they gave her some morphine. But it didn't work. I lose track of time now, but she suffered for many many hours. Eventually, they increased the dose of the morphine today at 4 AM after probably more than 24 hours of misery and no sleep.
Again, how much morphine do you give without risking her life? There's no clear answer here. It's more of a trial with no room for errors (but the breathing machine is standing by outside her door - just in case it's needed).
After that increased 4 AM dose, she finally fell asleep. Now it's 5 PM Saturday and she's still sleeping deeply. Breathing is fine so far.
So what caused all the agitation? It's hard to tell, but the drs think they identified an ileus (a word I just learned myself today). The best thing for it, per Dr. Rachel, is rest. (I will now take some measures to prevent myself of getting it....i.e., I'll rest....i.e., golf is on....)
Again, how much morphine do you give without risking her life? There's no clear answer here. It's more of a trial with no room for errors (but the breathing machine is standing by outside her door - just in case it's needed).
After that increased 4 AM dose, she finally fell asleep. Now it's 5 PM Saturday and she's still sleeping deeply. Breathing is fine so far.
So what caused all the agitation? It's hard to tell, but the drs think they identified an ileus (a word I just learned myself today). The best thing for it, per Dr. Rachel, is rest. (I will now take some measures to prevent myself of getting it....i.e., I'll rest....i.e., golf is on....)
Wednesday, January 27, 2010
A brief briefing
We are swinging between feeling good (a few days back) to seizures to sleepy (as a result of the seizure control meds) to very quiet.
They are trying to introduce [liquid] food again, but it doesn't go very well so far. According to the drs a stomach that didn't eat for a while, "forgets" how to process foods. This is the big challenge right now.
They are trying to introduce [liquid] food again, but it doesn't go very well so far. According to the drs a stomach that didn't eat for a while, "forgets" how to process foods. This is the big challenge right now.
Saturday, January 23, 2010
Forgiveness
I recently read a few articles and watched a few documentaries online about the amazing state of Rwanda. Just 15 years ago there was a terrible genocide there (is there any other kind of genocide?) that we all stood and watch from the sideline. The genocide was based on deeply rooted hatred between the Hutu and Tootsie (sp?).
Today the situation in Rwanda is beyond the word "amazing". There is true reconciliation there. People forgive their neighbors, who murdered their entire family; people invite these murderers to their family weddings, etc. Can you even begin imagining such thing? How can one forgive somebody who killed his/her father, mother, brothers and sisters - often in front of his own eyes? How? The answer is too simple: the victims don't want to be victims. They want to move on. And they realized: the only way to move on is to forgive. I'm sure it's not that simple. There's a lot of emotions and politics involved too and the Tootsie are still hunting those who planned the genocide. Nevertheless, the private reconciliations and forgiveness is simply beyond understanding of us in the western world. (Oh, BTW, meanwhile Rwanda's economy is blooming. Related?)
I encourage readers to google "Rwanda reconciliation" and find out more.
I brought it up not only because it is so beyond amazing, but also because of my personal connection as a Jew: The Jewish people suffered from the Holocaust. My own family was murdered. My own uncle survived the death camps. I was brought up with the message "to remember and never forget". Underneath this message there was and still is the message "never forgive". Every Israeli knows about it. We've been taught to hate everything that is German (except for the millions and millions of compensation dollars we received). Isn't it time that we forgive Germany and move on? If we don't forgive, how can we ever move on? When will we stop being the eternal victim? Why do we feel the need to always be a victim?
As the Rwandan victims prove, forgiveness is easy - weather on personal or national level. All it takes is to make a switch in your heart. That's all, seriously.
Today the situation in Rwanda is beyond the word "amazing". There is true reconciliation there. People forgive their neighbors, who murdered their entire family; people invite these murderers to their family weddings, etc. Can you even begin imagining such thing? How can one forgive somebody who killed his/her father, mother, brothers and sisters - often in front of his own eyes? How? The answer is too simple: the victims don't want to be victims. They want to move on. And they realized: the only way to move on is to forgive. I'm sure it's not that simple. There's a lot of emotions and politics involved too and the Tootsie are still hunting those who planned the genocide. Nevertheless, the private reconciliations and forgiveness is simply beyond understanding of us in the western world. (Oh, BTW, meanwhile Rwanda's economy is blooming. Related?)
I encourage readers to google "Rwanda reconciliation" and find out more.
I brought it up not only because it is so beyond amazing, but also because of my personal connection as a Jew: The Jewish people suffered from the Holocaust. My own family was murdered. My own uncle survived the death camps. I was brought up with the message "to remember and never forget". Underneath this message there was and still is the message "never forgive". Every Israeli knows about it. We've been taught to hate everything that is German (except for the millions and millions of compensation dollars we received). Isn't it time that we forgive Germany and move on? If we don't forgive, how can we ever move on? When will we stop being the eternal victim? Why do we feel the need to always be a victim?
As the Rwandan victims prove, forgiveness is easy - weather on personal or national level. All it takes is to make a switch in your heart. That's all, seriously.
Thursday, January 21, 2010
A good guess?
Liam is complaining all this time about pain in the abdominal area and the chest. Before we knew for sure that she's under excruciating pain, we leaned toward nausea. But again, what do you treat if you're not sure what the symptoms are? Anyway, the drs suggested that it's some type of symptom-I-forgot-the-medical-term-for, which basically boils down to an inflammation on the inside of the abdomen. They suggested a medication that would coat that area.
This guess may have been a successful one. Liam is not completely pain free, but the level of pain is much much reduced. It's now controlled with this medication-that-I-also-don't-know-how-to-pronounce and with Tylenol. Liam sleeps a lot, which is good. She needs the rest.
Unfortunately, things are never that simple. Among many other medications, Liam is receiving seizure controlling medication in the past several months. She's nearly seizure-free. Tonight, however, she suffered from a llllllloooooooonnnnnnggg seizure. The theory right now is that the tummy-coating medication I mentioned above interferes with the seizure control. This is just a theory at this point. The drs will play in the next few days with the way they administer these two medications to maximize comfort and minimize a chance for seizure.
A new doctor in town
It's getting harder and harder for me to follow conversations between Rachel and the drs these days. You see, she became an expert with medical terms, procedures, medication. The drs are consulting with her regarding medication. In the rare occasions that she's not with Liam, they'd call her at home to consult with her. She knows as much as they do - no joke. And it's not just the knowledge why they consult with her. It's also her wisdom and experience. She sort of made herself her own status at the hospital and is highly regarded by everybody. (And me? I just ask her for a beer. That's the only medication I know the name of. I keep things simple.)
This guess may have been a successful one. Liam is not completely pain free, but the level of pain is much much reduced. It's now controlled with this medication-that-I-also-don't-know-how-to-pronounce and with Tylenol. Liam sleeps a lot, which is good. She needs the rest.
Unfortunately, things are never that simple. Among many other medications, Liam is receiving seizure controlling medication in the past several months. She's nearly seizure-free. Tonight, however, she suffered from a llllllloooooooonnnnnnggg seizure. The theory right now is that the tummy-coating medication I mentioned above interferes with the seizure control. This is just a theory at this point. The drs will play in the next few days with the way they administer these two medications to maximize comfort and minimize a chance for seizure.
A new doctor in town
It's getting harder and harder for me to follow conversations between Rachel and the drs these days. You see, she became an expert with medical terms, procedures, medication. The drs are consulting with her regarding medication. In the rare occasions that she's not with Liam, they'd call her at home to consult with her. She knows as much as they do - no joke. And it's not just the knowledge why they consult with her. It's also her wisdom and experience. She sort of made herself her own status at the hospital and is highly regarded by everybody. (And me? I just ask her for a beer. That's the only medication I know the name of. I keep things simple.)
Wednesday, January 20, 2010
some relief
Liam is now getting some medication, which is not strong enough to suppress her breathing yet does the job of putting her to sleep to relieve her of the pain. Her sleep is intermittent: medication > sleep 2-3 hours > wake up > pain > medication.... and so on and so forth. The fact that she's sleeping some is already some progress.
Dialysis was put on hold for the time being. She might not need it after all.
Dialysis was put on hold for the time being. She might not need it after all.
Tuesday, January 19, 2010
Eema, it
HURTS, IT HURTS, IT HURTS!!!
There are no fonts that can describe the tone of Liam's screaming. There are no words to describe her misery. No enough punctuation can emphasize it. The same goes for the frustration we go through and the inability to help her. To stand there and see her suffer and call for you and you can't do anything. That too HURTS.
Monday, January 18, 2010
Sunday, January 17, 2010
Another 5000 night
Another rough night for Liam. Complaining started at 9:30 PM Saturday night and continued throughout the night until 12 hours later. Non-stop. It's really frustrating to see her suffer with no way to help her. And there's no way to know what's bothering her,
Liam is now extremely tired from all those sleepless night.
On a good note, in the few occasions when she emerges from the suffering, Liam is almost back to her old self: she jokes around, smiles, etc. And even when she's back in her suffering, she communicates more: I don't feel well, it hurts, Abba (daddy), Eema (mommy).
Liam is now extremely tired from all those sleepless night.
On a good note, in the few occasions when she emerges from the suffering, Liam is almost back to her old self: she jokes around, smiles, etc. And even when she's back in her suffering, she communicates more: I don't feel well, it hurts, Abba (daddy), Eema (mommy).
Saturday, January 16, 2010
stuff
Had I done my job right, I would have written to the blog last night. Then you would have read some good news: That Liam's puffiness is reduced and that she laughs more and interacts more and her eyes are bright and alive again and that we sat in the garden for more than an hour. Last night she laughed at some point her good`ol`Liam Laugh like I haven't see her laugh in so many months. (But as the laugh was over, the expression on her face changed abruptly and she immediately started complaining. It was strange. Scary.) But, I was too tired and lazy last night so instead you're getting the morning report - after a sleepless night. I counted approximately 5000 OOOOOOWWWWWWies during the night. Five thousands!!! (To the arithmetic freaks among you, I counted one minute and then did the math over 9 hours of sleepless complaining.)
Why Liam is complaining and what's bothering her is anybody's guess. It continues as I'm writing these words - Saturday morning. It's important to understand that the reduced in puffiness is not due to better functioning kidneys. Rather, it's most likely the result of the medication she's getting to stimulate urine output. So what to do about the kidneys?
Preliminary talks about dialysis has begun. It's not a simple matter. First of all, unlike patients with kidney problems ONLY, Liam suffers from multiple issues - some of them are unknown. So a dialysis is a guess. And it could be a guess that takes a heavy toll on her already very weak body. There's no telling ahead of time if dialysis bring better change more than it will make Liam suffer. It's a 50-50 thing. In other words, it's very likely that after a few sessions we will regret such decision.
A second issue to consider is what type of dialysis to perform. I won't go into details as I'm learning it myself these days. I'll only say that due to the manyappliances in her body, it's a decision that the Drs are scratching their heads over too.
Rachel
[sleepless] Weekend nights at the hospital are the best way to understand how hard Rachel has it. (You're encouraged to come and try it for yourself. OOoooh, that's an idea for a new reality show: a week with a very sick child in the hospital, 24x7.) Anywhoooo, Rachel's day is already full to the top with talks to the many Drs, nurses, other professionals. With filling up paperwork and making important phone calls. With talking to visitors. It's easy to forget that first and foremost Rachel is Liam's primary and most important health care provider. Rachel is the one to absorb every OOOOOWWWWWie and every complaint and every gag and every vomit and every poop - every second of every day and night. So when I'm bitching about 1-2 sleepless nights, think about what Rachel goes through during the week for 5-6 nights in a row. And of course, it's not just the physical erosion: it's coping with the unknown future - tomorrow, next week, and the upcoming months. Rachel is the one who does it all.
A moment from the past
In the Israeli army you go visit your family every other weekend or every 3-4 weekends - depending on your unit and job. For us, when we stayed in base (or in the field), we usually went to a nearby kibbutz to play football (eh, socc...), take a hot shower, and get on civilian cloths. Then the shabbat entered, even though it was not a real one as we had to continue our duties. Last night I took a walk on the treadmill in the fitness room - while watching the news in Spanish (the Latino lady was there before me). Then I returned to the room, took a shower, and put on some fresh cloths. It reminded me very much of those Fridays in the army. Once again the weekend is here but a guarding-patrol-ambush duty is in front of me for the night. It's strange how 30 years old feelings and associations pop back up at the most unexpected places.
The joy of writing
Sometime I enjoy writing. It started in middle school. I was always the worst, most disrespectful student. I found myself expelled from many lessons and face many disciplinary actions. That was fine with me as they played football (eh, soccer, remember?) outside and not in the classroom. But the best part of it all was when everybody left for the day and the teacher stood me in front of the blackboard, forcing me to write "I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy" a thousand times. They just didn't get that I enjoy writing so much. :-| Where am I getting with this? This page turned from a blog to sort of a news service. During the week I'm getting home too late and I'm too tired to write. By the time the weekend arrives I forget all the thoughts I had during the week, which I wanted to write about. Sorry to make you suffer through this poor writing, which I do in between attending to Liam (since time outside of the hospital must be dedicated to the holy of holiness: beer, football, and friends).
Why Liam is complaining and what's bothering her is anybody's guess. It continues as I'm writing these words - Saturday morning. It's important to understand that the reduced in puffiness is not due to better functioning kidneys. Rather, it's most likely the result of the medication she's getting to stimulate urine output. So what to do about the kidneys?
Preliminary talks about dialysis has begun. It's not a simple matter. First of all, unlike patients with kidney problems ONLY, Liam suffers from multiple issues - some of them are unknown. So a dialysis is a guess. And it could be a guess that takes a heavy toll on her already very weak body. There's no telling ahead of time if dialysis bring better change more than it will make Liam suffer. It's a 50-50 thing. In other words, it's very likely that after a few sessions we will regret such decision.
A second issue to consider is what type of dialysis to perform. I won't go into details as I'm learning it myself these days. I'll only say that due to the manyappliances in her body, it's a decision that the Drs are scratching their heads over too.
Rachel
[sleepless] Weekend nights at the hospital are the best way to understand how hard Rachel has it. (You're encouraged to come and try it for yourself. OOoooh, that's an idea for a new reality show: a week with a very sick child in the hospital, 24x7.) Anywhoooo, Rachel's day is already full to the top with talks to the many Drs, nurses, other professionals. With filling up paperwork and making important phone calls. With talking to visitors. It's easy to forget that first and foremost Rachel is Liam's primary and most important health care provider. Rachel is the one to absorb every OOOOOWWWWWie and every complaint and every gag and every vomit and every poop - every second of every day and night. So when I'm bitching about 1-2 sleepless nights, think about what Rachel goes through during the week for 5-6 nights in a row. And of course, it's not just the physical erosion: it's coping with the unknown future - tomorrow, next week, and the upcoming months. Rachel is the one who does it all.
A moment from the past
In the Israeli army you go visit your family every other weekend or every 3-4 weekends - depending on your unit and job. For us, when we stayed in base (or in the field), we usually went to a nearby kibbutz to play football (eh, socc...), take a hot shower, and get on civilian cloths. Then the shabbat entered, even though it was not a real one as we had to continue our duties. Last night I took a walk on the treadmill in the fitness room - while watching the news in Spanish (the Latino lady was there before me). Then I returned to the room, took a shower, and put on some fresh cloths. It reminded me very much of those Fridays in the army. Once again the weekend is here but a guarding-patrol-ambush duty is in front of me for the night. It's strange how 30 years old feelings and associations pop back up at the most unexpected places.
The joy of writing
Sometime I enjoy writing. It started in middle school. I was always the worst, most disrespectful student. I found myself expelled from many lessons and face many disciplinary actions. That was fine with me as they played football (eh, soccer, remember?) outside and not in the classroom. But the best part of it all was when everybody left for the day and the teacher stood me in front of the blackboard, forcing me to write "I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy; I was a bad boy" a thousand times. They just didn't get that I enjoy writing so much. :-| Where am I getting with this? This page turned from a blog to sort of a news service. During the week I'm getting home too late and I'm too tired to write. By the time the weekend arrives I forget all the thoughts I had during the week, which I wanted to write about. Sorry to make you suffer through this poor writing, which I do in between attending to Liam (since time outside of the hospital must be dedicated to the holy of holiness: beer, football, and friends).
Wednesday, January 13, 2010
Puff
Not sure if it can be seen in the picture below, but Liam is really puffed up. It started from the belly (which is HUGE now) and spread throughout the body. The explanation (or assumption) is that the kidneys don't filter the fluids good enough and thus don't send them downstream to the urine system. So the fluids are going "where they can". They give her medication to help with this - and indeed today she looks a bit better - but it's not enough [yet]. Even though she passed urine better today, she's still very puffy. More options are being studdied these days.
Somebody asked me about our daily life as a family. Well, we don't live as a family now. Liam and Rachel are in the hospital. Rachel is there nearly 24 hours a day. We're trying to relieve her for a few hours every day, but it's not always possible. When I arrive in the hospital in the evening directly from work, this is our chance of catching up. But too often we can't even do that as it's time for me to take over and for Rachel to get some relief. There are some very important things we need to talk about, which we put on the shelf again and again simply due to lack of time or privacy. Luckily we have a good family and friends who help when they can. We're thankful to all.
Meitav leaves home at 7 am and returns between 8-9 pm after school and dance programs. She works extremely hard. And then when she gets home tired and all, her family is not there to greet her. Iy must be tough.
I really have it the easiest of all. Work is easy compared to what everybody else do.
Somebody asked me about our daily life as a family. Well, we don't live as a family now. Liam and Rachel are in the hospital. Rachel is there nearly 24 hours a day. We're trying to relieve her for a few hours every day, but it's not always possible. When I arrive in the hospital in the evening directly from work, this is our chance of catching up. But too often we can't even do that as it's time for me to take over and for Rachel to get some relief. There are some very important things we need to talk about, which we put on the shelf again and again simply due to lack of time or privacy. Luckily we have a good family and friends who help when they can. We're thankful to all.
Meitav leaves home at 7 am and returns between 8-9 pm after school and dance programs. She works extremely hard. And then when she gets home tired and all, her family is not there to greet her. Iy must be tough.
I really have it the easiest of all. Work is easy compared to what everybody else do.
Monday, January 11, 2010
Sunday, January 10, 2010
WATCH OUT FOR DANGEROUS DOCTORS!!!!
Chapter 1 - Watch out
Liam had a rough night last night. A lot of gagging, no sleep, lost of moaning. Th GJ-tube is not working well and even though the feed was stopped, the reflux continues (or maybe it's something else???) We finally fell asleep around 6 AM. I was awakened by a special technician at 9 AM. She came to install a PICC line in Liam so they can provide her with nutrients. Strange. Nobody came and talked to me ahead of time. Oh well, maybe it was just a communication problem. But wait till you hear what happened next.
A nurse came in with a bunch of syringes - nothing unusual. She said she's there to give Liam her medications and "something to make her more comfortable". Now, I'm not familiar with medication names or with what they do. My trust is completely and wholly with the medical staff. On top of that all I want is for Liam to feel good. So when I hear such words, especially after a long night of suffering, I'm welcoming it. Luckily, another friend was sitting in the room. He IS familiar with different medications and their affects. So he said "WAIT A SECOND with this medication". At that point he got my attention (finally). It turns out that they were gonna give her a sedative to make the installation of the PICC line painless. What they COMPLETELY IGNORED is that Liam cannot get any sedatives. NONE!!! You see, her breathing is slow and shallow as is (4-8 breaths a minute). With sedation she might not breathe at all.
Wait, let's think about it again: The nurse was there with the syringe, just seconds away from giving it to Liam. THAT COULD HAVE KILLED LIAM RIGHT THERE. Sorry for all the capital letters today. Liam could have died today. This is how severe it is. A complete careless, irresponsible, and nearly critical decision. (To my understanding when Rachel confronted the Drs about it later, they still did not fully understand - or admit - their careless action.)
-------------------
Chapter 2 (better)
WOOF! After several attempts by the resident to find out what to do, we decided on continuing with the procedure without the sedative. It sounds like an easy decision, but it ain't so. You see, the procedure could have been painful and it is so delicate that it must be guaranteed that Liam wouldn't move through it. Had Liam felt pain, she could have jerked her arm, thus interrupting the process. Luckily (grin, grin), Liam slept extremely deep (since she was so tired from not sleeping last night) and didn't feel any of it - despite the tech sticking her arm several times and inserting a 37 centimeters long tube into her vein. (While the tech was working, I showed the nurse who stood by Liam's breathing rate on the monitor: 4, 8, 6, 4, 0 [!!!], 4, 6. "Do you see that?", I asked with my eyes. She nodded. She understood what the sedation could have caused.)
------------------
Chapter 3 - readers asked (a loose translation from Hebrew)
A: This is an excellent question not only on its own, but since it also give an opportunity to show the real Liam.
Prior to September 2009 we had the "real" Liam. The one who is happy to have riding lessons, asks for a snack, swims in the pool, asks for a snack, who rides the bus to school, comes home, snack, watches football and golf with her dad, snack, "drinks" beer with the guys, plays on the computer on her own, goes to summer camp in upstate New York, loves the beach, and most of all - spreads her smiles and her love everywhere.
That Liam is not a great talker, but she has words for what she needs and she gets around just fine. She has limited vocabulary and limited subjects she discusses and she repeats herself again and again.
But when Liam is suffering - and it could be as severe as the current ordeal or as simple as not-feeling-well - she shuts down. OOOOOOWWWWW is sometimes the only communication. But OOOOOOWWWW is better than complete silence still. And is she has just small islands of where she emerges out of the darkness, she immediately makes a one-word-joke to let us all know the real Liam is still there, covered by all those layers of darkness and misery and unknown.
Liam had a rough night last night. A lot of gagging, no sleep, lost of moaning. Th GJ-tube is not working well and even though the feed was stopped, the reflux continues (or maybe it's something else???) We finally fell asleep around 6 AM. I was awakened by a special technician at 9 AM. She came to install a PICC line in Liam so they can provide her with nutrients. Strange. Nobody came and talked to me ahead of time. Oh well, maybe it was just a communication problem. But wait till you hear what happened next.
A nurse came in with a bunch of syringes - nothing unusual. She said she's there to give Liam her medications and "something to make her more comfortable". Now, I'm not familiar with medication names or with what they do. My trust is completely and wholly with the medical staff. On top of that all I want is for Liam to feel good. So when I hear such words, especially after a long night of suffering, I'm welcoming it. Luckily, another friend was sitting in the room. He IS familiar with different medications and their affects. So he said "WAIT A SECOND with this medication". At that point he got my attention (finally). It turns out that they were gonna give her a sedative to make the installation of the PICC line painless. What they COMPLETELY IGNORED is that Liam cannot get any sedatives. NONE!!! You see, her breathing is slow and shallow as is (4-8 breaths a minute). With sedation she might not breathe at all.
Wait, let's think about it again: The nurse was there with the syringe, just seconds away from giving it to Liam. THAT COULD HAVE KILLED LIAM RIGHT THERE. Sorry for all the capital letters today. Liam could have died today. This is how severe it is. A complete careless, irresponsible, and nearly critical decision. (To my understanding when Rachel confronted the Drs about it later, they still did not fully understand - or admit - their careless action.)
-------------------
Chapter 2 (better)
WOOF! After several attempts by the resident to find out what to do, we decided on continuing with the procedure without the sedative. It sounds like an easy decision, but it ain't so. You see, the procedure could have been painful and it is so delicate that it must be guaranteed that Liam wouldn't move through it. Had Liam felt pain, she could have jerked her arm, thus interrupting the process. Luckily (grin, grin), Liam slept extremely deep (since she was so tired from not sleeping last night) and didn't feel any of it - despite the tech sticking her arm several times and inserting a 37 centimeters long tube into her vein. (While the tech was working, I showed the nurse who stood by Liam's breathing rate on the monitor: 4, 8, 6, 4, 0 [!!!], 4, 6. "Do you see that?", I asked with my eyes. She nodded. She understood what the sedation could have caused.)
------------------
Chapter 3 - readers asked (a loose translation from Hebrew)
Q: What is Lim's verbal communication like - before all this hospitalization ordeal started, and currently?
A: This is an excellent question not only on its own, but since it also give an opportunity to show the real Liam.
Prior to September 2009 we had the "real" Liam. The one who is happy to have riding lessons, asks for a snack, swims in the pool, asks for a snack, who rides the bus to school, comes home, snack, watches football and golf with her dad, snack, "drinks" beer with the guys, plays on the computer on her own, goes to summer camp in upstate New York, loves the beach, and most of all - spreads her smiles and her love everywhere.
That Liam is not a great talker, but she has words for what she needs and she gets around just fine. She has limited vocabulary and limited subjects she discusses and she repeats herself again and again.
But when Liam is suffering - and it could be as severe as the current ordeal or as simple as not-feeling-well - she shuts down. OOOOOOWWWWW is sometimes the only communication. But OOOOOOWWWW is better than complete silence still. And is she has just small islands of where she emerges out of the darkness, she immediately makes a one-word-joke to let us all know the real Liam is still there, covered by all those layers of darkness and misery and unknown.
Saturday, January 9, 2010
A night at the museum
Ehhhh, at the hospital.....
5pm: A visit to radiology for a GJ-tube scan. The Dr was hoping that a blockage or narrowing was found. That would have explained a lot - maybe. But, "unfortunately" all the tube systems are functioning well. Good news, but keeps the mystery alive.
6-7: Liam sat quietly in her wheelchair, "watching" TV. The TV is turned on 24 hours a day playing Curious George in an infinite loop. Liam likes it.
7pm: The nurses change Liam's diaper, treat her bed soar. None of this is fun for her.
8: Nurse from the new shift came in. Fotzed around with stuff. Laim's almost asleep.
9-ish: I fell asleep.
9:30: They came to cath her. She fell sleep soon after. So did I.
3:15 am: I woke up. WOW, we slept for nearly 6 hours straight!!! The first time in a week or so. That's good news. At the same time, we'll have to keep an eye on it. Liam got lethargic before.
4-7 am: Liam half dozed off, half complained, half stayed quite and listend to the TV (how many halves do we have already?) Every time she complained I read to her from Charlotte's Web. She relaxed quickly and dozed off again. I went to bed myself. But, as soon as I was ready to shut my eyes off, Liam complained. So I would read to her again. And that's how it continued again and again and again (that's how Liam is on a normal basis: she would be quite until I'm stick my fork in my meal or shut my eyes or go online....and exactly them she would complain to get my attention...somehow she senses what's going on). Until sometimes around 6am we both fell asleep - I think. I woke up around 7 when an alarm went off in one of the many instruments around her bed. By the time I found the nurse to take care of it, we were both wide awake.
And then the night became a new day. The day would be similar as far as Liam concerned. For us there are a few Dr visits, a few people visiting, meals, etc. Maybe we would put her in her wheelchair for several hours and walk the hallway.
5pm: A visit to radiology for a GJ-tube scan. The Dr was hoping that a blockage or narrowing was found. That would have explained a lot - maybe. But, "unfortunately" all the tube systems are functioning well. Good news, but keeps the mystery alive.
6-7: Liam sat quietly in her wheelchair, "watching" TV. The TV is turned on 24 hours a day playing Curious George in an infinite loop. Liam likes it.
7pm: The nurses change Liam's diaper, treat her bed soar. None of this is fun for her.
8: Nurse from the new shift came in. Fotzed around with stuff. Laim's almost asleep.
9-ish: I fell asleep.
9:30: They came to cath her. She fell sleep soon after. So did I.
3:15 am: I woke up. WOW, we slept for nearly 6 hours straight!!! The first time in a week or so. That's good news. At the same time, we'll have to keep an eye on it. Liam got lethargic before.
4-7 am: Liam half dozed off, half complained, half stayed quite and listend to the TV (how many halves do we have already?) Every time she complained I read to her from Charlotte's Web. She relaxed quickly and dozed off again. I went to bed myself. But, as soon as I was ready to shut my eyes off, Liam complained. So I would read to her again. And that's how it continued again and again and again (that's how Liam is on a normal basis: she would be quite until I'm stick my fork in my meal or shut my eyes or go online....and exactly them she would complain to get my attention...somehow she senses what's going on). Until sometimes around 6am we both fell asleep - I think. I woke up around 7 when an alarm went off in one of the many instruments around her bed. By the time I found the nurse to take care of it, we were both wide awake.
And then the night became a new day. The day would be similar as far as Liam concerned. For us there are a few Dr visits, a few people visiting, meals, etc. Maybe we would put her in her wheelchair for several hours and walk the hallway.
Friday, January 8, 2010
GJ-tube
Yesterday Liam's G-tube was extended to a GJ-tube. That is feeding to the intestines. Anyway, feeding was put on hold for the time being since Liam's stomach is mysteriously very bloated. She's suffering. Tests and examinations are in progress.
Wednesday, January 6, 2010
partly cloudy
Last time I reported of progress, so it's only natural that Liam will reverse things. We have mixed news: some good some not so.
The good: X-rays and imaging show Liam's kidneys in better shape than recently expected. I'm writing this sentence with great caution. Liam may hear of what I wrote and cause trouble again. Also, the assessment of the kidneys is not complete yet. We saw things change before.
Additionally, her other "numbers" are stable.
The not-so-good: Liam's stomach grew big. It's bloated with. Her feed was stopped yesterday in hope to relieve pressure and pain. It's not relieved her yet. She's OOOWWWIE but also shows signs of calm and even smiles periodically. That's it for this short note.
The good: X-rays and imaging show Liam's kidneys in better shape than recently expected. I'm writing this sentence with great caution. Liam may hear of what I wrote and cause trouble again. Also, the assessment of the kidneys is not complete yet. We saw things change before.
Additionally, her other "numbers" are stable.
The not-so-good: Liam's stomach grew big. It's bloated with
a message from Liam
Dear Friends and family,
Liam would like everyone to know that she appreciates all the love and concern for her. She welcomes short visits, especially if you know a good story or sing and dance. Liam prefers that we do not discuss her care and ailments in her room. She knows it all and is sick of hearing about it.
Thank you
Love from Rachel and Liam
=======================
A message from Asher:
Thanks, everybody, for looking after Meitav and myself. If you deliver food to the house, please label your dishes with your name. If you believe that we did not return your dish, you're probably right. Drop by and we'll try to find it.
Liam would like everyone to know that she appreciates all the love and concern for her. She welcomes short visits, especially if you know a good story or sing and dance. Liam prefers that we do not discuss her care and ailments in her room. She knows it all and is sick of hearing about it.
Thank you
Love from Rachel and Liam
=======================
A message from Asher:
Thanks, everybody, for looking after Meitav and myself. If you deliver food to the house, please label your dishes with your name. If you believe that we did not return your dish, you're probably right. Drop by and we'll try to find it.
Monday, January 4, 2010
Liam makes her dad look like an idiot - again
The sharp minded reader probably noticed that [almost] every time I write about something good, something bad happens next. And vice versa. Well' maybe Liam read yesterday's post, because she decided to show me as an idiot - yet again. But I'll take it - this time.
Last night Liam, out of the blues of suffering, became verbal again. "I'm mad, I'm mad, I'M MAD!!!" This is most unusual for Liam to express herself - even at the best of times. Let alone when she's under so much stress. So despite the "negative" meaning of the words, it's definitely a positive sign. It proves what I was thinking all along: that under the OOOOWWWWWies and suffering and vomiting and complaining and just-very-quite, Liam's brain is alive and kicking. She feels, the senses, she thinks. She just can't find a way to express herself.
Today the good trend continues. Liam complained a lot less, talked more (just a bit), took nice rests, and even made a small joke. This girl's spirit and love of life is something ordinary people like you and I can't fully understand. She's coming back again and again from the darkest places against all odds.
The numbers look better: heart rate, pulse, blood pressure (just a bit), etc. In the past few days or weeks we learned that her kidneys are working even worse that the 30% functionality we knew about. Maybe at 20% or so. We were also told that this is most likely an irreversible situation. But lo and behold, today they showed a [very slight] improvement. In the spirit of the opening sentence to this post, I'm hoping I'm not ruining everything with the delivery of good or maybe-good news.
Ah, karma.....
Somebody asked me in email (approximate translation from Hebrew):
Q: You wrote that you and Rachel faced or are facing tough decisions. What is your stance? Are you raising your hands up? (approx translation from Hebrew slang, which means giving up)
A: Unless an enemy soldier aims a gun at my head, I'm not raising my hands up. I'm not giving up. I'm not sure giving up (raising of the hands) is the right term to use in this situation.
A: Yes, this is correct. We did face that decision already once. Even though we were given time to consider it, this was an easy one: I knew immediately I wanted to intubate her. That was her only chance. We succeeded this time. But, it doesn't mean that the next time we have to make such decision [if there will be a next time] be as easy as the previous one. Although Liam is not in an immediate life-threatening danger right now, things could change rapidly. We already saw it happening - more than once. We have to be ready with tools to make this decision the next time. Something we are thinking about and discussing. So it's really not a matter of "raising the hands" (as in giving up). You have to make the best decision for your child; that she'd suffer the least.
Last night Liam, out of the blues of suffering, became verbal again. "I'm mad, I'm mad, I'M MAD!!!" This is most unusual for Liam to express herself - even at the best of times. Let alone when she's under so much stress. So despite the "negative" meaning of the words, it's definitely a positive sign. It proves what I was thinking all along: that under the OOOOWWWWWies and suffering and vomiting and complaining and just-very-quite, Liam's brain is alive and kicking. She feels, the senses, she thinks. She just can't find a way to express herself.
Today the good trend continues. Liam complained a lot less, talked more (just a bit), took nice rests, and even made a small joke. This girl's spirit and love of life is something ordinary people like you and I can't fully understand. She's coming back again and again from the darkest places against all odds.
The numbers look better: heart rate, pulse, blood pressure (just a bit), etc. In the past few days or weeks we learned that her kidneys are working even worse that the 30% functionality we knew about. Maybe at 20% or so. We were also told that this is most likely an irreversible situation. But lo and behold, today they showed a [very slight] improvement. In the spirit of the opening sentence to this post, I'm hoping I'm not ruining everything with the delivery of good or maybe-good news.
Ah, karma.....
Somebody asked me in email (approximate translation from Hebrew):
Q: You wrote that you and Rachel faced or are facing tough decisions. What is your stance? Are you raising your hands up? (approx translation from Hebrew slang, which means giving up)
A: Unless an enemy soldier aims a gun at my head, I'm not raising my hands up. I'm not giving up. I'm not sure giving up (raising of the hands) is the right term to use in this situation.
Q: When Liam was intubated (artificially provided oxygen), you mentioned that you had to make decisions that parents normally don't have to make regarding their kids. I assume you were talking about if-and-when to discontinue such treatment.
A: Yes, this is correct. We did face that decision already once. Even though we were given time to consider it, this was an easy one: I knew immediately I wanted to intubate her. That was her only chance. We succeeded this time. But, it doesn't mean that the next time we have to make such decision [if there will be a next time] be as easy as the previous one. Although Liam is not in an immediate life-threatening danger right now, things could change rapidly. We already saw it happening - more than once. We have to be ready with tools to make this decision the next time. Something we are thinking about and discussing. So it's really not a matter of "raising the hands" (as in giving up). You have to make the best decision for your child; that she'd suffer the least.
Sunday, January 3, 2010
still crazy (after all this Ritalin)
Liam is extremely agitated the past 24-36 hours. She hardly slept at all and is constantly complaining - AAAAWWWWOOOO, AAAAAAAAWWWWWWWOOOOOO - non-stop nearly 24 hours a day. It's impossible to calm her down. Since Liam is not verbal when she's not well, it's impossible to know what's bothering her. Her urine and blood look good. Her breathing is fine. In the rare moments that she's asleep, her blood pressure and heart rate are good. But, in most of the time when she's agitated both of them are too high. We think - and it's only a theory at this point - that the Ritalin they gave her to encourage brain activity and better breathing, is the culprit. So last night it was decided to stop it altogether. I spent the night with her. We never slept - maybe 20 minutes here or there. But this morning the medical staff made a mistake and GAVE HER RITALIN AGAIN!!!! This is why she's so crazy as I'm writing these words (live from Egleston). The problem is that they don't want to give any calming medication, such as Valium, in fear of suppressing her breathing. Tylenol etc don't do squat.
And that's the news from the hospital this Sunday morning. I wish I could deliver better news, but that's the situation. The error the Drs made is extremely frustrating. At the same time and just to be fair, remember that I mentioned that the Ritalin is just a theory. Liam has multiple issues so we have to be open minded about other things.
And how did I feel when I learned about the Ritalin error from the Dr? I wasn't angry at all. The moment I learned about it it already belonged to the past. There was nothing I could do to reverse it, so why get angry? I felt terrible for Liam. She tries so hard to relax and she can't. It's beyond her control. Later, when it sunk in, I also felt a huge disappointment. And, I want to make sure such errors never occur again - either with Liam or other kids.
To be continued..... (at some point)
And that's the news from the hospital this Sunday morning. I wish I could deliver better news, but that's the situation. The error the Drs made is extremely frustrating. At the same time and just to be fair, remember that I mentioned that the Ritalin is just a theory. Liam has multiple issues so we have to be open minded about other things.
And how did I feel when I learned about the Ritalin error from the Dr? I wasn't angry at all. The moment I learned about it it already belonged to the past. There was nothing I could do to reverse it, so why get angry? I felt terrible for Liam. She tries so hard to relax and she can't. It's beyond her control. Later, when it sunk in, I also felt a huge disappointment. And, I want to make sure such errors never occur again - either with Liam or other kids.
To be continued..... (at some point)
Saturday, January 2, 2010
A new year with a new begining
mmmmaybe not so...
Friday, 1-1-2010
New year's eve was an eventful night not only in Times Square, but also in the hospital. Liam threw up a lot. I know, I know, throwing up is almost the theme of this blog. But this was different. How different? I don't know that I have the words to describe it. It's just a parent feeling.
The rest of this post is pretty graphic. If you don't think you can handle it, stop here.
Anyway, today we put Liam in her wheelchair and took her downstairs. She was pretty content with this. That was around noon. But things changed rapidly. Liam started to shake her had almost violently from side to side. We put her back in bed but that did not calm her down at all.
At about 2:30 pm Rachel and the nurse were preparing to cath her. We knew from before that Liam was bleading very lightly from her "lady area". Maybe a result of an unsuccessful or missed cath (?). But now they discovered a huge paddle of blood there. Dr's and nurses rushed to the room. Rachel and the nurse still attempted to cath her to find out where's the blood coming from. Exactly at the same time Liam started vomiting violently - something very liquidy and green. As if this was not enough, blood came out of her mouth (we later found out that she bit her tongue, but we didn't know that yet in the heat of the battle). Her stool also looked abnormal.
The vomiting was so bad that they connected a drain mechanism to her feeding "button" in her belly. That indeed helped. However, every now and then the drain has to be clamped for a while to administer medications. When that happens, vomiting resumes.
It took a long while to get everything to a calmer state. That is a VERY relative term. Liam was still restless and shaking her head non-stop from side to side. We had to be patient and wait for lab results of her blood, urine, and few other things.
As I was leaving for the night a few lab results came back negative. But Liam was still agitated. WHAT A DAY!!!
(But, what am I complaining about? I went home to my own bed; Rachel stayed at the hospital with agitated Liam - not fun.)
Saturday:
As I came in this morning ast 8-ish, everything was quite. Both Rachel and Liam were asleep. Liam greeted me with a smile - WHAT A GIFT!!! A good start for the day. All the liquids have better colors this morning. She is still being drained via the G-tube port; she has a permanent catheter (permanent in the sense that it's there all the time; no need to cath her every few hours).
To be continued....[maybe]
Friday, 1-1-2010
New year's eve was an eventful night not only in Times Square, but also in the hospital. Liam threw up a lot. I know, I know, throwing up is almost the theme of this blog. But this was different. How different? I don't know that I have the words to describe it. It's just a parent feeling.
The rest of this post is pretty graphic. If you don't think you can handle it, stop here.
Anyway, today we put Liam in her wheelchair and took her downstairs. She was pretty content with this. That was around noon. But things changed rapidly. Liam started to shake her had almost violently from side to side. We put her back in bed but that did not calm her down at all.
At about 2:30 pm Rachel and the nurse were preparing to cath her. We knew from before that Liam was bleading very lightly from her "lady area". Maybe a result of an unsuccessful or missed cath (?). But now they discovered a huge paddle of blood there. Dr's and nurses rushed to the room. Rachel and the nurse still attempted to cath her to find out where's the blood coming from. Exactly at the same time Liam started vomiting violently - something very liquidy and green. As if this was not enough, blood came out of her mouth (we later found out that she bit her tongue, but we didn't know that yet in the heat of the battle). Her stool also looked abnormal.
The vomiting was so bad that they connected a drain mechanism to her feeding "button" in her belly. That indeed helped. However, every now and then the drain has to be clamped for a while to administer medications. When that happens, vomiting resumes.
It took a long while to get everything to a calmer state. That is a VERY relative term. Liam was still restless and shaking her head non-stop from side to side. We had to be patient and wait for lab results of her blood, urine, and few other things.
As I was leaving for the night a few lab results came back negative. But Liam was still agitated. WHAT A DAY!!!
(But, what am I complaining about? I went home to my own bed; Rachel stayed at the hospital with agitated Liam - not fun.)
Saturday:
As I came in this morning ast 8-ish, everything was quite. Both Rachel and Liam were asleep. Liam greeted me with a smile - WHAT A GIFT!!! A good start for the day. All the liquids have better colors this morning. She is still being drained via the G-tube port; she has a permanent catheter (permanent in the sense that it's there all the time; no need to cath her every few hours).
To be continued....[maybe]
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