For the first time in this blogs history the total monthly total of postings exceeds the monthly total of days. I almost posted something each day of the month, so I didn't want to miss the opportunity to post something on the last day of the month.
Nothing much has changed really. She's still uncomfortable... there really hasn't been much in way of improvement. They did take another series of x-rays to make sure there isn't any intestinal blockage since Emmah has been vomiting a bit. The x-rays came back showing no blockage so that's good. Now it's just trying to get through the night and to tomorrow.
Okay, so I didn't get this posted on time... so I will unceremoniously drop this in now
KEIYTAP
31 January, 2010
30 January, 2010
Hmmmm...
That didn't work out like we thought it would.
Emmah went in for the epidural Friday morning. After recovering, they brought her back to the room. So far so good. Emmah was asked if her back still hurt. Yes!
Great...
So here it is Friday night, or do you prefer Saturday morning? Either way it's a long time since the epidural went in. They've mixed the cocktail of meds going in the epidural and so far it might be working? I say might be working with a question mark only because I'm getting mixed signals here. Most of the day, Emmah had been expressing that she's still uncomfortable. It had left all the king's horses and all the king's men scratching their collective hineys and heads. The original concoction wasn't doing the trick. Time for a mixed potion... if you will.
Now this new blend seemed to be working. I say this because when I got back from seeing everyone off I asked her how her pain was. She motioned with her hands by bringing them closer to each other as to indicate that is was less. She even said it was less. I asked her for the infamous number on the 0-10 scale. Drum roll please... 2. That's right a 2. I giddily asked really? She said I think so. Hmmm... what does THAT mean? The only other indication I have is how often she hits her PCA. That number was holding steady until... Until the nurse just asked her like 20 minutes ago how would she rate her pain. 8... What! An 8... Hmmm and hmmm hmmm hmmm...
I don't think that this picture will clear up until morning... that is to say when the sun is up morning.
In other news... her BMAs came back negative. Early on in treatment, we always viewed this a good thing... perhaps an indication of things. See, Neuroblastoma is often found in the marrow/bone... especially in relapse. The fact that it's never been there has always given us a smidgen of extra hope. The reality is (as we've come to learn) that our experience is that it makes no difference in terms of relapsing. We realize that it not being in the marrow means one less place to have to battle and that's about it.
And lastly, but not (Webster's liberties again -->)leastly... the trial isn't being started until Monday. I know, I hear ya groaning too. Reason being something about not having the personal on board over the weekend. So add another huge SIGH of disappointment to the pile. With any luck, by then, maybe, they will figure out a way to get Emmah finally out of pain.
You know... Monday is such a long way away.
KEIYTAP
Emmah went in for the epidural Friday morning. After recovering, they brought her back to the room. So far so good. Emmah was asked if her back still hurt. Yes!
Great...
So here it is Friday night, or do you prefer Saturday morning? Either way it's a long time since the epidural went in. They've mixed the cocktail of meds going in the epidural and so far it might be working? I say might be working with a question mark only because I'm getting mixed signals here. Most of the day, Emmah had been expressing that she's still uncomfortable. It had left all the king's horses and all the king's men scratching their collective hineys and heads. The original concoction wasn't doing the trick. Time for a mixed potion... if you will.
Now this new blend seemed to be working. I say this because when I got back from seeing everyone off I asked her how her pain was. She motioned with her hands by bringing them closer to each other as to indicate that is was less. She even said it was less. I asked her for the infamous number on the 0-10 scale. Drum roll please... 2. That's right a 2. I giddily asked really? She said I think so. Hmmm... what does THAT mean? The only other indication I have is how often she hits her PCA. That number was holding steady until... Until the nurse just asked her like 20 minutes ago how would she rate her pain. 8... What! An 8... Hmmm and hmmm hmmm hmmm...
I don't think that this picture will clear up until morning... that is to say when the sun is up morning.
In other news... her BMAs came back negative. Early on in treatment, we always viewed this a good thing... perhaps an indication of things. See, Neuroblastoma is often found in the marrow/bone... especially in relapse. The fact that it's never been there has always given us a smidgen of extra hope. The reality is (as we've come to learn) that our experience is that it makes no difference in terms of relapsing. We realize that it not being in the marrow means one less place to have to battle and that's about it.
And lastly, but not (Webster's liberties again -->)leastly... the trial isn't being started until Monday. I know, I hear ya groaning too. Reason being something about not having the personal on board over the weekend. So add another huge SIGH of disappointment to the pile. With any luck, by then, maybe, they will figure out a way to get Emmah finally out of pain.
You know... Monday is such a long way away.
KEIYTAP
28 January, 2010
Hospital log day... like it really matters!
Seriously... I'm carving/scratching marks in the drywall here akin to what you'd see in a prison cell.
Okay sports fans or other ardent readers. The sun did in fact rise... I know this because I actually see it. It's been a long cold lonely winter... it's feels like years since it's been here. I know, I'm such the wordsmith... stealing (partial) lines from George Harrison/The Beatles... <--- the greatest band ever by the way.
Be right back... I need to plug in my iPod, I suddenly want to listen to some Beatles.
Okay you got me, I didn't really go anywhere I merely turned around to get my iPod (and cable) off the window ledge.
I generally only post when something's going on, or I have something to say. So far for the month of January I've been blabbing about one thing or another... mostly though it's been all about Emmah.
In the interest of not having to go to the streets to keep with Emmah's demand of narcotics, there is going to be a change made in her pain management. She will be getting an epidural.
I know I posted yesterday that she was on 100mg of methadone/24hrs. Foolish am I... that's the single dose. 100mg is the single dose and she gets three single doses a day... yup 300mg a day. YIKES!
Then, as I'm sitting here typing this out, I can see her PCA pump and it has a digital reading as to the total dilaudid she's had. Right now it reads 483.8... that's in mg too folks AND that's not even a 24hr total, that's a so far today total.
So if we take the PCA total and the methadone total, she's got almost 800mg of narcotics swirling around her body... well I know that this isn't all at once, but still. No wonder she's out of it. As if having that much narcotics on board isn't frightening enough, she's still uncomfortable. Hence a new plan was forged... an epidural... something localized. In turn that should get her off all the dilaudid. She will have to be weaned off the methadone.
Hopefully this will enable her to come out of the clouds as the epidural is local and not systemic.
Extra! Extra! Emmah ate 1/4 of an apple earlier today!
So as I sit and ponder things and wonder what the next minute or hour will bring, I wonder; where we are really? It's impossible to remain upbeat. I said that I don't like standing here looking down that dark path for fear that once we start down it there will be no turning back.
Perhaps I'm too stupid or naive to realize that we have in fact already started down this path.
God I hope not...
Hmmm... I think some of said apple just came back... damn! :(
There are times that I wish I was just plain old stoopid, then I could go on blissfully unaware... this is definitely one of those times.
Never has so much hope hung in the balance of one little pill.
Praying for a miracle... KEIYTAP
Okay sports fans or other ardent readers. The sun did in fact rise... I know this because I actually see it. It's been a long cold lonely winter... it's feels like years since it's been here. I know, I'm such the wordsmith... stealing (partial) lines from George Harrison/The Beatles... <--- the greatest band ever by the way.
Be right back... I need to plug in my iPod, I suddenly want to listen to some Beatles.
Okay you got me, I didn't really go anywhere I merely turned around to get my iPod (and cable) off the window ledge.
I generally only post when something's going on, or I have something to say. So far for the month of January I've been blabbing about one thing or another... mostly though it's been all about Emmah.
In the interest of not having to go to the streets to keep with Emmah's demand of narcotics, there is going to be a change made in her pain management. She will be getting an epidural.
I know I posted yesterday that she was on 100mg of methadone/24hrs. Foolish am I... that's the single dose. 100mg is the single dose and she gets three single doses a day... yup 300mg a day. YIKES!
Then, as I'm sitting here typing this out, I can see her PCA pump and it has a digital reading as to the total dilaudid she's had. Right now it reads 483.8... that's in mg too folks AND that's not even a 24hr total, that's a so far today total.
So if we take the PCA total and the methadone total, she's got almost 800mg of narcotics swirling around her body... well I know that this isn't all at once, but still. No wonder she's out of it. As if having that much narcotics on board isn't frightening enough, she's still uncomfortable. Hence a new plan was forged... an epidural... something localized. In turn that should get her off all the dilaudid. She will have to be weaned off the methadone.
Hopefully this will enable her to come out of the clouds as the epidural is local and not systemic.
Extra! Extra! Emmah ate 1/4 of an apple earlier today!
So as I sit and ponder things and wonder what the next minute or hour will bring, I wonder; where we are really? It's impossible to remain upbeat. I said that I don't like standing here looking down that dark path for fear that once we start down it there will be no turning back.
Perhaps I'm too stupid or naive to realize that we have in fact already started down this path.
God I hope not...
Hmmm... I think some of said apple just came back... damn! :(
There are times that I wish I was just plain old stoopid, then I could go on blissfully unaware... this is definitely one of those times.
Never has so much hope hung in the balance of one little pill.
Praying for a miracle... KEIYTAP
27 January, 2010
Guess what ????
More waiting... weeeee!
No, not for the BMAs... those were done around noonish.
There was talk of starting the trial Friday.
FRIDAY!?!?!
What's wrong with tomorrow? I suspect damn paper work is to blame!
So more waiting... uggg!
Emmah managed to pilfer my bed here... she's sleeping on it now as I type this out. I don't mind... it's just good to see her out of her bed. Even if it's just in another bed.
She's still in pain, but at least the pain meds that she's being given are allowing her to sleep. God knows she needs it and without question deserves it!
I continue to be astounded at the amount of pain medicine that she is getting. They increased her on demand dose. It was 25mg per push of the button, now it's 35mg per push. There is like a ten minute lockout feature on it so that she can't sit there pushing and pushing the button.
Thing of it that's so frightening is that if you or I had a one time 35mg shot of dilaudid... or even a 10mg one time shot... there stands a really really... really good chance that it would kill us. Her body has become so acclimated to the drug and she's built such a tolerance to it that it takes as much as she's getting to help her through the pain. In addition to the dilaudid, she's getting something like 100mg of methadone over the course of a (24hr) day.
I don't know if the trial med is going to be the thing or not. I do know that we are hanging a lot on it. Hopefully it will have a positive (and lasting) effect and will be tolerated well enough that it will allow for us/Emmah to continue. I'm hoping that things haven't gone too far already. I'm hoping that this does work and it brings with it some pain relief. Relief from a pain that has been so prevalently increasing and sadly a part of Emmah's (and our) everyday life since October now. I'm hoping that we will get to go home sometime before 2010 gives way to 2011. I'm hoping for a miracle.
Man, we're sure hanging an awful lot on that one word...
HOPE!
KEIYTAP
No, not for the BMAs... those were done around noonish.
There was talk of starting the trial Friday.
FRIDAY!?!?!
What's wrong with tomorrow? I suspect damn paper work is to blame!
So more waiting... uggg!
Emmah managed to pilfer my bed here... she's sleeping on it now as I type this out. I don't mind... it's just good to see her out of her bed. Even if it's just in another bed.
She's still in pain, but at least the pain meds that she's being given are allowing her to sleep. God knows she needs it and without question deserves it!
I continue to be astounded at the amount of pain medicine that she is getting. They increased her on demand dose. It was 25mg per push of the button, now it's 35mg per push. There is like a ten minute lockout feature on it so that she can't sit there pushing and pushing the button.
Thing of it that's so frightening is that if you or I had a one time 35mg shot of dilaudid... or even a 10mg one time shot... there stands a really really... really good chance that it would kill us. Her body has become so acclimated to the drug and she's built such a tolerance to it that it takes as much as she's getting to help her through the pain. In addition to the dilaudid, she's getting something like 100mg of methadone over the course of a (24hr) day.
I don't know if the trial med is going to be the thing or not. I do know that we are hanging a lot on it. Hopefully it will have a positive (and lasting) effect and will be tolerated well enough that it will allow for us/Emmah to continue. I'm hoping that things haven't gone too far already. I'm hoping that this does work and it brings with it some pain relief. Relief from a pain that has been so prevalently increasing and sadly a part of Emmah's (and our) everyday life since October now. I'm hoping that we will get to go home sometime before 2010 gives way to 2011. I'm hoping for a miracle.
Man, we're sure hanging an awful lot on that one word...
HOPE!
KEIYTAP
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