Monday, May 31, 2010
Saturday, May 29, 2010
Sort of the same, but different
What is "stability"?
There's some sort of stability in Liam's condition. But what does stability really mean in this case?
Liam complains and moans. Not as much as in the big, non-stop OOOOOOOWWWWWWWies days in the hospital, but she's not comfortable nonetheless. As we mentioned earlier, the symptoms have the general name of Visceral Hyperanalgesia. In English it means that abdominal pain can start at any time and could be triggered by really small things - things that you and I may not even feel. One minute she's ok and the next she's in excruciating pain. Even when she's "ok" is not really ok. Smiles and just regular talk become rare nowadays. When she's not in pain she lays down quietly or sleeps. When she's awake, she mostly moans. Some days are better than others, but altogether it looks like we're in a new phase these days. We still don't sleep though the night. And that's the sort of stability we're experiencing. Life through pain. A terrible and cruel stability. And who knows, maybe it's not stability at all. Maybe we'll find ourselves back in the hospital soon? You just never know.
Dr. Rachel
Rachel is keeping keeping in touch with the medical staff from the hospital, still trying to adjust Liam's pain medication. One of the challenges is how all the chemicals that we pump into her work together. When we were in the hospital, it's all their responsibility. Now a lot of it is ours. We have to watch that her breathing is not too shallow.
Vacation
Are you kidding me? No chance. We're in prison now. To be honest, the last few years we went to the beach, it was never really a true vacation. We had to constantly transfer her from her own wheelchair to the beach wheelchair; then from the beach wheelchair to the tent; and back to the wheelchair; give her a makeshift bath; and so on and so forth. There was so much work to do with Liam that we always returned exhausted and with a broken back. Not to mention the fact that Liam had no patience to going out to a park or a restaurant etc. In prior years it wasn't like that. She was fun. But in later years it became harder and harder to leave the house with her.
But now, we will take with two hands any kind of vacation - as challenging as it might be. Just to get out. Just to breathe some different air. All we can do is just dream about it. There's no chance for it to happen.
There's some sort of stability in Liam's condition. But what does stability really mean in this case?
Liam complains and moans. Not as much as in the big, non-stop OOOOOOOWWWWWWWies days in the hospital, but she's not comfortable nonetheless. As we mentioned earlier, the symptoms have the general name of Visceral Hyperanalgesia. In English it means that abdominal pain can start at any time and could be triggered by really small things - things that you and I may not even feel. One minute she's ok and the next she's in excruciating pain. Even when she's "ok" is not really ok. Smiles and just regular talk become rare nowadays. When she's not in pain she lays down quietly or sleeps. When she's awake, she mostly moans. Some days are better than others, but altogether it looks like we're in a new phase these days. We still don't sleep though the night. And that's the sort of stability we're experiencing. Life through pain. A terrible and cruel stability. And who knows, maybe it's not stability at all. Maybe we'll find ourselves back in the hospital soon? You just never know.
Dr. Rachel
Rachel is keeping keeping in touch with the medical staff from the hospital, still trying to adjust Liam's pain medication. One of the challenges is how all the chemicals that we pump into her work together. When we were in the hospital, it's all their responsibility. Now a lot of it is ours. We have to watch that her breathing is not too shallow.
Vacation
Are you kidding me? No chance. We're in prison now. To be honest, the last few years we went to the beach, it was never really a true vacation. We had to constantly transfer her from her own wheelchair to the beach wheelchair; then from the beach wheelchair to the tent; and back to the wheelchair; give her a makeshift bath; and so on and so forth. There was so much work to do with Liam that we always returned exhausted and with a broken back. Not to mention the fact that Liam had no patience to going out to a park or a restaurant etc. In prior years it wasn't like that. She was fun. But in later years it became harder and harder to leave the house with her.
But now, we will take with two hands any kind of vacation - as challenging as it might be. Just to get out. Just to breathe some different air. All we can do is just dream about it. There's no chance for it to happen.
Saturday, May 22, 2010
Angel or devil?
This portion of the blog starts somewhere on Thursday, 5-20-2010, I think. I'm pretty sure. Well, I don't know. Maybe.
Angel: When I arrived at the hospital after work I went directly to the garden. I hid behind a bush and yelled L--I--A--M. From the path I could see her approaching on her wheelchair, a wide smile on her face stretched from ear to ear. What a gift. I'll never get tired of saying that. The last few days Liam didn't smile at all. If there were any expressions out of her they were moaning and complaining. Not a lot, but some. In addition, she was very uncomfortable sitting in her chair. And here we are on Thursday, not only she sat in her chair for more than an hour, but smiling too.
Devil: But this didn't last for too long. Shortly after the OOOOOWWWWWWies started. We noticed that if we keep walking, she complained less. So we walked round and round the garden. At some point that was enough too and she had to get back in bed. Pain meds didn't help. The OOOOWWWies continued. Until.....
Angel: They cath'd her. Within minutes she started smiling and joking. Rachel informed me that there was a good chance we would leave the hospital on Friday and go home. On my way home that night I dropped a prescription at CVS for next day pickup.
Devil: But not an hour went by when Rachel called to ask if the prescription is ready. Liam was in too much pain. Those pains, now know we, lasted all night long and all Friday long. I rejoined Liam Friday at 2:30, while she was in dialysis. The OOOOWWWWies continued non-stop. Rachel thought it was more mental than physical. I disagreed. Pain-complaints continued into Friday evening.
I returned to the hospital Friday at 7:30 to find Liam still whining. For more than 24 hours now.
Small angel: I read Frog and Toad to her and within minutes she fell into deep sleep, which lasted nearly 2 hours. That was her first sleep of more than 20 minutes in the last 24 hours.
That is, of course, if you believe in angels and devils.
What is like to spend a night with Liam when she's in pain?
It has several aspects to it:
Saturday
Now Liam's back home. Angel and devil story again. When Liam left the hospital around 2 PM and all the way home, she was in excellent mood. She was interactive, she joked. When we drove up the driveway and I announced "Liam's home" she gave out a huge YAAAAY, like the good old Liam.
But as soon as we got on the porch the OOOOOWWWWies resumed. We put her in this bed and that bed, gave her this medicine and that - nothing worked. And that's the way things are as I'm writing this - 8-ish. Wait, suddenly she fell asleep, allowing us to eat dinner in peace. The baby monitor is right next to us. We can hear her breathe while we eat. Curious George is in the background, as usual.
The evening post dinner was as before - angels and devils flip-flops. Sudden mood changes. From being content and happy to being extremely agitated within seconds.
I swear I watered the garden
I hardly ever take care of the garden. I don't like planting, weeding, etc. Not my thing. (I'm trying weeding every now and then, but they beg me to stop it after I pull out a few expensive and exotic plants. My explanation that every war has its casualties didn't help. Strange, eh? So I retired. No arguments here.) I'm a certified irrigation engineer from back in Israel (the official title is something like Water and Soil "Practical Engineer"). It was useful as long as I was a farmer. So I declared myself the irrigation manager of the garden. In previous seasons I indeed installed a semi-automatic irrigation system. But since I took upon myself another title, I had to become more efficient with the irrigation system. But not to worry: I combined both jobs while taking the holistic approach. As a self appointed social coordinator, I sit on the porch trying to lure neighbors and by passers to join me for a glass of beer. Then I let nature take its course. From the porch, I'm watching the garden and the sky (like a lifeguard at the beach) and hoping for rain. If it doesn't rain, oh well, it's survival of the fittest for the plants. The saving in water balances perfectly the . Now everybody's happy.
But this last Thursday, thinking that Liam's returning home on Friday, I decided to be a good husband and water the garden. I wanted Rachel to see a green, blooming garden as soon as we drive in. I visited every plant and used all the hydrology and science I learned in my early years t make the garden happy. Then it rained that night, destroying all my brownie points. But honey, I swear I watered the plant. I did, I did!
Lesson learned: you wanna be a good husband? Drink beer on the porch and do nothing else. It makes no difference anyway.
------------------------------
10 PM: from screaming in agitation-or-pain-or-who-knows-what, she suddenly fell asleep. Gotta get some sleep before the storm returns. What am I still doing awake writing this blog?
Angel: When I arrived at the hospital after work I went directly to the garden. I hid behind a bush and yelled L--I--A--M. From the path I could see her approaching on her wheelchair, a wide smile on her face stretched from ear to ear. What a gift. I'll never get tired of saying that. The last few days Liam didn't smile at all. If there were any expressions out of her they were moaning and complaining. Not a lot, but some. In addition, she was very uncomfortable sitting in her chair. And here we are on Thursday, not only she sat in her chair for more than an hour, but smiling too.
Devil: But this didn't last for too long. Shortly after the OOOOOWWWWWWies started. We noticed that if we keep walking, she complained less. So we walked round and round the garden. At some point that was enough too and she had to get back in bed. Pain meds didn't help. The OOOOWWWies continued. Until.....
Angel: They cath'd her. Within minutes she started smiling and joking. Rachel informed me that there was a good chance we would leave the hospital on Friday and go home. On my way home that night I dropped a prescription at CVS for next day pickup.
Devil: But not an hour went by when Rachel called to ask if the prescription is ready. Liam was in too much pain. Those pains, now know we, lasted all night long and all Friday long. I rejoined Liam Friday at 2:30, while she was in dialysis. The OOOOWWWWies continued non-stop. Rachel thought it was more mental than physical. I disagreed. Pain-complaints continued into Friday evening.
I returned to the hospital Friday at 7:30 to find Liam still whining. For more than 24 hours now.
Small angel: I read Frog and Toad to her and within minutes she fell into deep sleep, which lasted nearly 2 hours. That was her first sleep of more than 20 minutes in the last 24 hours.
That is, of course, if you believe in angels and devils.
What is like to spend a night with Liam when she's in pain?
It has several aspects to it:
- The biggest factor is of course Liam's pain. The suffering she's going through.
- The frustration of being her parent and the inability to help.
- The frustration of the medications not helping.
- The frustration of the Drs scratching their heads not knowing what to do.
- The fatigue. You're so tired yourself, physically and mentally. And frustrated - did I say that already?
Saturday
Now Liam's back home. Angel and devil story again. When Liam left the hospital around 2 PM and all the way home, she was in excellent mood. She was interactive, she joked. When we drove up the driveway and I announced "Liam's home" she gave out a huge YAAAAY, like the good old Liam.
But as soon as we got on the porch the OOOOOWWWWies resumed. We put her in this bed and that bed, gave her this medicine and that - nothing worked. And that's the way things are as I'm writing this - 8-ish. Wait, suddenly she fell asleep, allowing us to eat dinner in peace. The baby monitor is right next to us. We can hear her breathe while we eat. Curious George is in the background, as usual.
The evening post dinner was as before - angels and devils flip-flops. Sudden mood changes. From being content and happy to being extremely agitated within seconds.
I swear I watered the garden
I hardly ever take care of the garden. I don't like planting, weeding, etc. Not my thing. (I'm trying weeding every now and then, but they beg me to stop it after I pull out a few expensive and exotic plants. My explanation that every war has its casualties didn't help. Strange, eh? So I retired. No arguments here.) I'm a certified irrigation engineer from back in Israel (the official title is something like Water and Soil "Practical Engineer"). It was useful as long as I was a farmer. So I declared myself the irrigation manager of the garden. In previous seasons I indeed installed a semi-automatic irrigation system. But since I took upon myself another title, I had to become more efficient with the irrigation system. But not to worry: I combined both jobs while taking the holistic approach. As a self appointed social coordinator, I sit on the porch trying to lure neighbors and by passers to join me for a glass of beer. Then I let nature take its course. From the porch, I'm watching the garden and the sky (like a lifeguard at the beach) and hoping for rain. If it doesn't rain, oh well, it's survival of the fittest for the plants. The saving in water balances perfectly the . Now everybody's happy.
But this last Thursday, thinking that Liam's returning home on Friday, I decided to be a good husband and water the garden. I wanted Rachel to see a green, blooming garden as soon as we drive in. I visited every plant and used all the hydrology and science I learned in my early years t make the garden happy. Then it rained that night, destroying all my brownie points. But honey, I swear I watered the plant. I did, I did!
Lesson learned: you wanna be a good husband? Drink beer on the porch and do nothing else. It makes no difference anyway.
------------------------------
10 PM: from screaming in agitation-or-pain-or-who-knows-what, she suddenly fell asleep. Gotta get some sleep before the storm returns. What am I still doing awake writing this blog?
Wednesday, May 19, 2010
Still in the hospital
Over the weekend, when we admitted Liam into the hospital, Rachel said "only for a day or two". Yeah, right. Liam, as usual, is taking her time. I think that the UTI is under control, but Liam is too sleepy. Plus, they are considering different methods to try and prevent future UTI's. (And between the "big" things there's the every day: blood pressure too high or maybe too low, occasional vomiting, pain-discomfort, etc.)
Saturday, May 15, 2010
Back in Egleston
I did it again. I'm getting so good at jinxing us, it's not a joke any more. Just a short while after I published the last post, we found ourselves back in the hospital. Liam sleeps a lot in the last few days. Together with some small oooowwwwies and a cloudy, sludgy urine, Rachel took a urine sample to the lab this AM. Within a short time we knew that she has a Urinary Tract Infection (UTI) again. Rachel made a few phone calls and within a short time they decided to admit Liam into the hospital. This admission is a bit different than previous one. In all previous admissions we went to the ER first, where they kept Liam for many hours before sending her to the floor. This time Rachel arranged things such that we showed up at the general registration desk and within minutes were in the room on the floor that we know - TICU.
Baby steps
It seems that every time I'm writing something, things flip around 180 degrees the other way so that I will look like an idiot. Oh well, we'll take the risk. Since my last report on Wednesday, things changed for the better - bit by bit. Baby steps. Liam is OOOOWWWWWie a lot less and most of her pain is controlled by Tylenol and sometimes by even simpler means: turn her over on her side, read her a story, change the CD or the TV channel. She still sleeps a lot, but this sleep is different, I think. She's not drugged out this time. I think she's "burning" them drugs away. It's not as if she's completely pain free, but it's good to be able to keep the WMD's that we have on hold and use simple Tylenol.
And you have to learn the small signs, but it seems that even the OOOOOWWWWies have a different tone now. Rather that "it hurts, it hurts, IT HURTS!!!" they mean more "I need to be rolled over" or "I need a different CD" etc. But from the link I provided in one of the recent posts, it's clear that what we consider a small, almost negligible pain, might broadcast a HUGE PAIN to Liam's brain.
After a rough start to the week, we slept ok the last few nights. Not straight through the night, but far better than the all-OOOOOWWWWie nights. Even Frog and Toad got their rest (but The Cat In The Hat may had to fill in for them....all night long, non-stop).
Friday:
After work I went to pick Liam from dialysis. As I was walking through the Egleston lobby, I passed a small group of young musicians playing for the sick kids - and anybody else who happened to be there. Two kids joined the band. One kid was hooked to a breathing machine. The other had all kind of bags, IV's, hoses - just like Liam. I'm not sure how well the words they sang synchronized with the music played, but there was no mistake of how they saw it. The wide smile on their faces said it all. A good start for Friday evening.
In order to transfer Liam from her bed to the wheelchair (and back), one must care for several "devices" and hoses: her feeding machine (enclosed in a backpack) and a drain-collection back (hooked to her G-tube). I'm putting one strap of the backpack over my left shoulder; the drain bag I'm stuffing somewhere on Liam herself. Then I raise the power chair to its max height. Then, with my mighty height (all 5-6 of it, Kareem laughs), my muscular arms (George Forman squints in envy), and my strong back (total of 6 bulging and/or herniated disks - no joke), I pick Liam up and put her in her chair. We say goodbye to the dialysis folks and off we go.
At home, Liam is exhausted from the dialysis and falls asleep even before we arrive. I hold the hand of my good friend Dale and together we walk outside to chat with the neighbors. Dinner on the porch just like the good old days. It's amazing how the simple things in life become so meaningful and important after you were deprived of them for such a long time.
Now it's Saturday. Yesterday I told Rachel that based on the last 48 hours, tomorrow (today) Liam will open her eyes more and talk. Sure enough, she did. She even gave us a few good Liam-smiles. Every time she does something like that, we're cherishing it as if there's no tomorrow. Because it's a gift. We simply accept it and say thank you.
The fine print:
The smart reader already knows what might always happen next, right? There's no telling, just based on the recent improvement, what would come next. So I'm not gonna repeats it. Oops....
And you have to learn the small signs, but it seems that even the OOOOOWWWWies have a different tone now. Rather that "it hurts, it hurts, IT HURTS!!!" they mean more "I need to be rolled over" or "I need a different CD" etc. But from the link I provided in one of the recent posts, it's clear that what we consider a small, almost negligible pain, might broadcast a HUGE PAIN to Liam's brain.
After a rough start to the week, we slept ok the last few nights. Not straight through the night, but far better than the all-OOOOOWWWWie nights. Even Frog and Toad got their rest (but The Cat In The Hat may had to fill in for them....all night long, non-stop).
Friday:
After work I went to pick Liam from dialysis. As I was walking through the Egleston lobby, I passed a small group of young musicians playing for the sick kids - and anybody else who happened to be there. Two kids joined the band. One kid was hooked to a breathing machine. The other had all kind of bags, IV's, hoses - just like Liam. I'm not sure how well the words they sang synchronized with the music played, but there was no mistake of how they saw it. The wide smile on their faces said it all. A good start for Friday evening.
In order to transfer Liam from her bed to the wheelchair (and back), one must care for several "devices" and hoses: her feeding machine (enclosed in a backpack) and a drain-collection back (hooked to her G-tube). I'm putting one strap of the backpack over my left shoulder; the drain bag I'm stuffing somewhere on Liam herself. Then I raise the power chair to its max height. Then, with my mighty height (all 5-6 of it, Kareem laughs), my muscular arms (George Forman squints in envy), and my strong back (total of 6 bulging and/or herniated disks - no joke), I pick Liam up and put her in her chair. We say goodbye to the dialysis folks and off we go.
At home, Liam is exhausted from the dialysis and falls asleep even before we arrive. I hold the hand of my good friend Dale and together we walk outside to chat with the neighbors. Dinner on the porch just like the good old days. It's amazing how the simple things in life become so meaningful and important after you were deprived of them for such a long time.
Now it's Saturday. Yesterday I told Rachel that based on the last 48 hours, tomorrow (today) Liam will open her eyes more and talk. Sure enough, she did. She even gave us a few good Liam-smiles. Every time she does something like that, we're cherishing it as if there's no tomorrow. Because it's a gift. We simply accept it and say thank you.
The fine print:
The smart reader already knows what might always happen next, right? There's no telling, just based on the recent improvement, what would come next. So I'm not gonna repeats it. Oops....
Wednesday, May 12, 2010
Pain, pain, pain
A 2nd night at home. The pain is intensified. Liam's miserable. The only time she's not in pain, is when she's asleep (or drugged out). OOOOWWW is the first thing she's saying as soon as she wakes up. Rachel's trying to get help from the pain team. The thought of that these are first days out of the hospital and adjustments are needed.
Can't help but admire Rachel again and again and again. She's the day nurse and and the night nurse and the case manager and most of all, mom. It could be overwhelming for anybody, but Rachel plows through it all with a cool head while Liam is screaming out of pain for hours and with little sleep on top of everything.
I wrote the above this morning. What is it today? Wednesday, ok. Now we're entering the 3rd night at home. Liam went tp dialysis today. Came back OOOOWWWWWie at around 6. The pain Drs and Rachel are trying to tweak when to give what and how much. Around 8 gave her her evening medications and turned her on her side. She's sleeping well since. There two frustrating things to me:
1. That she's in so much pain.
2. That the only way to relieve her of her pain is to drug her out heavily into sleep. We will be watching this in the next few days.
About to hit the hay. There's no telling what kind of night is ahead of us.
Can't help but admire Rachel again and again and again. She's the day nurse and and the night nurse and the case manager and most of all, mom. It could be overwhelming for anybody, but Rachel plows through it all with a cool head while Liam is screaming out of pain for hours and with little sleep on top of everything.
I wrote the above this morning. What is it today? Wednesday, ok. Now we're entering the 3rd night at home. Liam went tp dialysis today. Came back OOOOWWWWWie at around 6. The pain Drs and Rachel are trying to tweak when to give what and how much. Around 8 gave her her evening medications and turned her on her side. She's sleeping well since. There two frustrating things to me:
1. That she's in so much pain.
2. That the only way to relieve her of her pain is to drug her out heavily into sleep. We will be watching this in the next few days.
About to hit the hay. There's no telling what kind of night is ahead of us.
Monday, May 10, 2010
Liam's home
Again, not because her condition improved so much, but more because Rachel thinks everything they do in the hospital she can do at home. Liam is under a lot of pain in recent days. The picture of her laughing that we posted a few days ago is a distant memory now.
I will add to this post tomorrow - hopefully. Check back right here for an expanded post. (I should probably do it now. Liam's staying in the TV room, which means that Rachel is watching Dances With The Stars from bed, which means I'm forced be awake....spousal abuse at its worst.....A Schmaltz Widow, that's what I am.)
Continue from yesterday....
I know that the first thing you want to know is how was my night after Dancing With The Stars. Not too bad, I must admit. Unfortunately, Liam's night was not that great - and consequently Rachel's. In addition to the pain she's living with, there's the getting used to home again. She had dialysis yesterday and then moved from the hospital home. For the rest of us changing rooms or beds is no biggie. Not so for Liam, especially after such a long time in the hospital. This is just a theory, of course. We don't know for sure that this is bothering her.
We, and the medical staff too, have changed our attitude toward Liam's pain recently. In the past we wanted to know what's bothering her. We were after the symptoms. Today we want her to be first of all pain free.
And talking about today, Tuesday, she just has a very very difficult day. She's miserable. Lots and lots of pain. It's hard to calm her down. The medication can only go so far. Her blood pressure is high, which may be a contributor. You see, when still in the hospital, her blood pressure was too low. So they stopped the BP control medication. And now it's too high.
A Name
For the past 2 years and even more so in the past 9 months (since Sept 2009), Liam is suffering from "something". Nobody was ever able to narrow it down to a known, named illness. That is still the case. And the truth is that she really have a variety of issues: kidneys, high blood pressure, neurological, respiratory issues, orthopedic, motility, chronic vomiting, what am I forgetting? Each one of these problems is a serious issue for anybody, let alone for a weak, disabled child. I always claimed the majority of her issues is "central", i.e., coming from the brain. But what do I know?
With dialysis under way and blood pressure under control (most of the time), focus has been shifted most recently to pain management. Surprisingly, one of the doctors came across an article that describes a group of symptoms that matches Liam almost perfectly. This is the first time that we maybe, just maybe, have a name for what she has:
Visceral Hyperanalgesia
We don't know for fact that this is indeed what she has. Also:
1. The above article does not offer any specific cause or solutions.
2. The article discuss kids who have just that issue alone (which is a huge problem for any kid), not somebody like Liam who has multiple issues.
So we might have a name. This good, since we could never call her stomach-intestines-motility issue by any name. Is it progress? Not really. At least not yet. If/when the Drs find a case where treatment was successful, than maybe we will have something to look forward to. At this point, as noted above, it's all about pain management for Liam.
I will add to this post tomorrow - hopefully. Check back right here for an expanded post. (I should probably do it now. Liam's staying in the TV room, which means that Rachel is watching Dances With The Stars from bed, which means I'm forced be awake....spousal abuse at its worst.....A Schmaltz Widow, that's what I am.)
Continue from yesterday....
I know that the first thing you want to know is how was my night after Dancing With The Stars. Not too bad, I must admit. Unfortunately, Liam's night was not that great - and consequently Rachel's. In addition to the pain she's living with, there's the getting used to home again. She had dialysis yesterday and then moved from the hospital home. For the rest of us changing rooms or beds is no biggie. Not so for Liam, especially after such a long time in the hospital. This is just a theory, of course. We don't know for sure that this is bothering her.
We, and the medical staff too, have changed our attitude toward Liam's pain recently. In the past we wanted to know what's bothering her. We were after the symptoms. Today we want her to be first of all pain free.
And talking about today, Tuesday, she just has a very very difficult day. She's miserable. Lots and lots of pain. It's hard to calm her down. The medication can only go so far. Her blood pressure is high, which may be a contributor. You see, when still in the hospital, her blood pressure was too low. So they stopped the BP control medication. And now it's too high.
A Name
For the past 2 years and even more so in the past 9 months (since Sept 2009), Liam is suffering from "something". Nobody was ever able to narrow it down to a known, named illness. That is still the case. And the truth is that she really have a variety of issues: kidneys, high blood pressure, neurological, respiratory issues, orthopedic, motility, chronic vomiting, what am I forgetting? Each one of these problems is a serious issue for anybody, let alone for a weak, disabled child. I always claimed the majority of her issues is "central", i.e., coming from the brain. But what do I know?
With dialysis under way and blood pressure under control (most of the time), focus has been shifted most recently to pain management. Surprisingly, one of the doctors came across an article that describes a group of symptoms that matches Liam almost perfectly. This is the first time that we maybe, just maybe, have a name for what she has:
Visceral Hyperanalgesia
We don't know for fact that this is indeed what she has. Also:
1. The above article does not offer any specific cause or solutions.
2. The article discuss kids who have just that issue alone (which is a huge problem for any kid), not somebody like Liam who has multiple issues.
So we might have a name. This good, since we could never call her stomach-intestines-motility issue by any name. Is it progress? Not really. At least not yet. If/when the Drs find a case where treatment was successful, than maybe we will have something to look forward to. At this point, as noted above, it's all about pain management for Liam.
Saturday, May 8, 2010
The Plan
Saturday, 5-8-2010
The plan was to leave the hospital today and go home. The plan started yesterday. The plan was to give Liam pain medication, if needed, through the J-tube overnight - not through the IV. The plan worked well. We gave her Tylenol and Ativan. She was up with pain twice last night, but both times we gave her Tylenol she went back to sleep. So the plan was to pack up and leave. But any plan always have a plan-B. Plan-B, you guessed it, was not a plan at all. If the condition wouldn't allow it (according to the non-plan-B), we stay in the hospital.
This morning, after a relatively peaceful night, Liam started having more and more pain. Rachel arrived all cheered up about leaving. She started packing - while Liam is in increasing pain. HELLO!!! Well, the hope was that one more Tylenol and we're on our way home, eh? Not so fast, cowboy. The pain just grew and grew during the day.
For tonight The Plan is not much different than last night:
Tylenol as needed.
Ativan via J-tube and Stadol (sniff) x2
If above don't work, give Versed.
If all fails, give Ativan through the IV.
Giving her stuff through the IV would be a step back.
When Liam's asleep, her heart rate (HR) is at 70-80s. From my bed I can see it climbing to the 130s-140s. The OOOOOWWWWWies are just around the corner. I can tell that by seeing the HR climbing. But she's quite so far, so SHUT UP, Asher.
There are a few things with Liam which can easily confuse you:
1. She is not a pretender. Never. When she complains, it hurts. No doubt about it. At the same time.....
2. She rarely says WHAT hurts and NEVER says how much it hurts. Thus....
3. It's very possible that a small OOOOOOWWWWW sounds exactly the same as a big OOOOOWWWWWW. You simply can't tell. And maybe.....
4. It's not even pain, but pressure from the urine bladder or nausea or simply irritation? It still comes out in a dramatic and continuous OOOOWWWW.
5. Many times the pain arrives out of nowhere. One minute she's calm, and the next her face goes very red, her HR is climbing through the roof, and she OOOOWWWs.
Tomorrow we will make another attempt to leave the hospital. But first thing first, I just want to get through the night.
The plan was to leave the hospital today and go home. The plan started yesterday. The plan was to give Liam pain medication, if needed, through the J-tube overnight - not through the IV. The plan worked well. We gave her Tylenol and Ativan. She was up with pain twice last night, but both times we gave her Tylenol she went back to sleep. So the plan was to pack up and leave. But any plan always have a plan-B. Plan-B, you guessed it, was not a plan at all. If the condition wouldn't allow it (according to the non-plan-B), we stay in the hospital.
This morning, after a relatively peaceful night, Liam started having more and more pain. Rachel arrived all cheered up about leaving. She started packing - while Liam is in increasing pain. HELLO!!! Well, the hope was that one more Tylenol and we're on our way home, eh? Not so fast, cowboy. The pain just grew and grew during the day.
For tonight The Plan is not much different than last night:
Tylenol as needed.
Ativan via J-tube and Stadol (sniff) x2
If above don't work, give Versed.
If all fails, give Ativan through the IV.
Giving her stuff through the IV would be a step back.
When Liam's asleep, her heart rate (HR) is at 70-80s. From my bed I can see it climbing to the 130s-140s. The OOOOOWWWWWies are just around the corner. I can tell that by seeing the HR climbing. But she's quite so far, so SHUT UP, Asher.
There are a few things with Liam which can easily confuse you:
1. She is not a pretender. Never. When she complains, it hurts. No doubt about it. At the same time.....
2. She rarely says WHAT hurts and NEVER says how much it hurts. Thus....
3. It's very possible that a small OOOOOOWWWWW sounds exactly the same as a big OOOOOWWWWWW. You simply can't tell. And maybe.....
4. It's not even pain, but pressure from the urine bladder or nausea or simply irritation? It still comes out in a dramatic and continuous OOOOWWWW.
5. Many times the pain arrives out of nowhere. One minute she's calm, and the next her face goes very red, her HR is climbing through the roof, and she OOOOWWWs.
Tomorrow we will make another attempt to leave the hospital. But first thing first, I just want to get through the night.
Wednesday, May 5, 2010
The smile we've been waiting for
For the last few days there was what seems to be a very gradual improvement in Liam's condition. Still, she didn't talk (still doesn't), didn't smile, didn't interact. Had occasional pain, nausea (especially after dialysis - which is likely to continue), etc.
Well, today she broke free with plenty of smiles. When we went outside she reached for the driving stick of her wheelchair and attempted to stir. Below she smiles not to the camera but to a few words I say in Hebrew, which for some unknown reason crack her up.
(They always tell you to read the fine print: With all the delight to see her smile and a hope for even a better tomorrow, we've been there before and saw how things flip exactly the other way around. Don't want to sound like a party pooper, just a realist with some experience.)
Monday, May 3, 2010
A post looking for a title
Liam slept until Thursday and then woke up straight into the old pain - the one from before the PICU. The more time passes from when she woke up, the greater the pain and discomfort is. Poor baby. She's awakes and she speaks, but mostly OOOOWWW and "I don't feel well". I know, I know, sounds old.
As the weekend progressed, it looks like Liam feels just a wee-bit better. Maybe she's not in pain so much any more. But she still hardly speaks, and worst of all, doesn't smile at all. When Liam does speak, it looks like she's going to extreme efforts to say simple words that she knows well. It looks like something went south.
I'm on call this week, which means Rachel doesn't get a break to sleep at home. Except for a few hours a day - if she's lucky - she spends all her time in the hospital. Think about it: living in the hospital. All the time, day in and day out. I know I wrote probably the same exact words in the past, but it doesn't get old - unfortunately.
This weekend is especially difficult for both of us. For Rachel because of Liam's misery. For me because of the many calls I'm getting from work. It seems like we're contantly under fire. Living in Israel under the Katyusha rockets threat was easier - no joke.
Here's how Sunday looked for me:
10 am: I'm still sweating from an hour of exercise, when the work phone rings. And the SMS. And a high priority email. Ok, I get the idea. You want my attention. We and an emergency call that lasted 2 hours.
While listening to other people talk, I did a bunch of stuff around the house.
As I was cleaning one of the toilets, I noticed it's leaking badly. DRAT!!
I identified the spot of leak. As soon as the meeting was over, I headed out to search for an oh-ring seal - praying I won't get any call while I'm out. Of course, with my luck, the first store had all the seals in the world, but not the one I needed. Had to look for it elsewhere. Found it. Rushed home.
2-ish: Started assembling the toilet again.
2:10: ring-ring. Back to the computer. Solve another problem.
3-ish: Putting the toilet together.
3:10: you guessed it, ring-ring. This time I don't give up. Finishing assembling the toilet, checked for leaks, done.
3:20: Answering this last call. False alarm (but these ring too, you know).
4-ish: Went to the hospital, taking a gamble that the phone wouldn't ring. Ironically, the hospital, where it's usually very hectic, actually calmed me down. I put Liam in her wheelchair and we walked outside. Liam was so-so. Not in pain, but still complaining periodically and having hard time speaking. Not smiling at all where she used to smile.
8:30: Returned home. Had to take care of a bunch of stuff. Busy, busy.
9:30: DONE!!! Time for bed.
9:31: Ah, but you're too smart, dear reader. You know already what came next. Yup, ring-ring. And so I was on the phone on another emergency conf call until 11:30 PM.
6 am: Wake up, a new day.
Meitav is sick. A second girl from carpool is sick too. I ended up taking a single girl to school.
At this point I was ready to to write: Ahhh, Monday. Going to the calm atmosphere at the office. But the madness continued into Monday. Can't wait for Wednesday morning, when I'm off the hook.
As the weekend progressed, it looks like Liam feels just a wee-bit better. Maybe she's not in pain so much any more. But she still hardly speaks, and worst of all, doesn't smile at all. When Liam does speak, it looks like she's going to extreme efforts to say simple words that she knows well. It looks like something went south.
I'm on call this week, which means Rachel doesn't get a break to sleep at home. Except for a few hours a day - if she's lucky - she spends all her time in the hospital. Think about it: living in the hospital. All the time, day in and day out. I know I wrote probably the same exact words in the past, but it doesn't get old - unfortunately.
This weekend is especially difficult for both of us. For Rachel because of Liam's misery. For me because of the many calls I'm getting from work. It seems like we're contantly under fire. Living in Israel under the Katyusha rockets threat was easier - no joke.
Here's how Sunday looked for me:
10 am: I'm still sweating from an hour of exercise, when the work phone rings. And the SMS. And a high priority email. Ok, I get the idea. You want my attention. We and an emergency call that lasted 2 hours.
While listening to other people talk, I did a bunch of stuff around the house.
As I was cleaning one of the toilets, I noticed it's leaking badly. DRAT!!
I identified the spot of leak. As soon as the meeting was over, I headed out to search for an oh-ring seal - praying I won't get any call while I'm out. Of course, with my luck, the first store had all the seals in the world, but not the one I needed. Had to look for it elsewhere. Found it. Rushed home.
2-ish: Started assembling the toilet again.
2:10: ring-ring. Back to the computer. Solve another problem.
3-ish: Putting the toilet together.
3:10: you guessed it, ring-ring. This time I don't give up. Finishing assembling the toilet, checked for leaks, done.
3:20: Answering this last call. False alarm (but these ring too, you know).
4-ish: Went to the hospital, taking a gamble that the phone wouldn't ring. Ironically, the hospital, where it's usually very hectic, actually calmed me down. I put Liam in her wheelchair and we walked outside. Liam was so-so. Not in pain, but still complaining periodically and having hard time speaking. Not smiling at all where she used to smile.
8:30: Returned home. Had to take care of a bunch of stuff. Busy, busy.
9:30: DONE!!! Time for bed.
9:31: Ah, but you're too smart, dear reader. You know already what came next. Yup, ring-ring. And so I was on the phone on another emergency conf call until 11:30 PM.
6 am: Wake up, a new day.
Meitav is sick. A second girl from carpool is sick too. I ended up taking a single girl to school.
At this point I was ready to to write: Ahhh, Monday. Going to the calm atmosphere at the office. But the madness continued into Monday. Can't wait for Wednesday morning, when I'm off the hook.
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