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.
Wednesday, July 28, 2010
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.
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