Re: back from the hospital

February 9, 2003

All in all...just confirmation after confirmation that his disease is progressing and how unstable he is right now. I am sad about the news but feels if just verifies what my guts were telling me....of course, always hoping they are wrong wrong wrong...

Huge big hug to you, Deb. I am so sad to hear the latest about . Will keep you in my prayers. Hope you have helpful conversations with Dr. Korson and your neuro.

Maggie

February 10, 2003

I am so sorry to hear your news. I just read the book, "Joy in a Foreign Land" and wanted to let you know if you didn't read it already that I thought it would be a great book for you to read to help deal with all this. It has challenged me quite a bit as I have been quite afraid of Asenath's decline over the last 6 months. It is so scary that she just won't eat and has constant diarrhea. It has been especially bad today with more than 10 diapers with pure liquid, especially knowing she won't drink or eat for us today. The Pediasure is our only hope for her not becoming dehydrated. But, I know God is control and knows what he is doing. That is a comfort to me when I start to panic about the future. Hope you are at peace tonight, knowing God has you in His loving arms. Darla: mom to Asenath back from the hospital Hi thereWell, we had our MRI on Friday and they ended up keeping overnight for observation. This was the first time he was put under since they discovered the cardiomyopathy and hypoventilation so they were a little nervous about it. The MRI lasted two hours...I was getting alittle concerned but since they just got these new machines (thurs wa sthe first day for them to use them) I was hoping they were just playing. The Radiologist actually caleld to get history himself and then called back with the results...very impressive...anyway, has two things that did not show up in October Cerebral Atrophy and Periventricular white matter disease (or deterioration). The first causing his motor issues and strokes and the latter is quite serious and explains the dementia and siezures and such...also makes his prognosis that much more serious. I asked him about Adrenoluekodystrophy which has always been in the back of my head and he said while it didn't look like that, it was the same area of the brain which could explain why his disease has been so progressive and mirroring ADL more than mito. I still haven't gotten to talk to our neuro (someone else was on weekend rounds) or Dr Korson but am planning to speak with them tomorrow.The wanted to keep him bc/ it appears his cardiomyopathy is really starting to take a toll on him...his heart rate and blood pressures are really off. His sats ended up dropping in the night and so we now have oxygen at night...hospice sent it right out. He is getting a hospital bed on Monday b/c he is falling out of the bed (has a big nasty lip to show for it) and becasue they want his head elevated some to see if that will help with the hypoventilation.All in all...just confirmation after confirmation that his disease is progressing and how unstable he is right now. I am sad about the news but feels if just verifies what my guts were telling me....of course, always hoping they are wrong wrong wrong...anyone with knowlege about cerebral atrophy or periventricular white matter issues in mito, please write on or off list...thanks guysdeb Please contact mito-owner with any problems or questions.

February 10, 2003

I am so sorry to hear your news. I just read the book, "Joy in a Foreign Land" and wanted to let you know if you didn't read it already that I thought it would be a great book for you to read to help deal with all this. It has challenged me quite a bit as I have been quite afraid of Asenath's decline over the last 6 months. It is so scary that she just won't eat and has constant diarrhea. It has been especially bad today with more than 10 diapers with pure liquid, especially knowing she won't drink or eat for us today. The Pediasure is our only hope for her not becoming dehydrated. But, I know God is control and knows what he is doing. That is a comfort to me when I start to panic about the future. Hope you are at peace tonight, knowing God has you in His loving arms. Darla: mom to Asenath back from the hospital Hi thereWell, we had our MRI on Friday and they ended up keeping overnight for observation. This was the first time he was put under since they discovered the cardiomyopathy and hypoventilation so they were a little nervous about it. The MRI lasted two hours...I was getting alittle concerned but since they just got these new machines (thurs wa sthe first day for them to use them) I was hoping they were just playing. The Radiologist actually caleld to get history himself and then called back with the results...very impressive...anyway, has two things that did not show up in October Cerebral Atrophy and Periventricular white matter disease (or deterioration). The first causing his motor issues and strokes and the latter is quite serious and explains the dementia and siezures and such...also makes his prognosis that much more serious. I asked him about Adrenoluekodystrophy which has always been in the back of my head and he said while it didn't look like that, it was the same area of the brain which could explain why his disease has been so progressive and mirroring ADL more than mito. I still haven't gotten to talk to our neuro (someone else was on weekend rounds) or Dr Korson but am planning to speak with them tomorrow.The wanted to keep him bc/ it appears his cardiomyopathy is really starting to take a toll on him...his heart rate and blood pressures are really off. His sats ended up dropping in the night and so we now have oxygen at night...hospice sent it right out. He is getting a hospital bed on Monday b/c he is falling out of the bed (has a big nasty lip to show for it) and becasue they want his head elevated some to see if that will help with the hypoventilation.All in all...just confirmation after confirmation that his disease is progressing and how unstable he is right now. I am sad about the news but feels if just verifies what my guts were telling me....of course, always hoping they are wrong wrong wrong...anyone with knowlege about cerebral atrophy or periventricular white matter issues in mito, please write on or off list...thanks guysdeb Please contact mito-owner with any problems or questions.

February 10, 2003

I am so sorry to hear your news. I just read the book, "Joy in a Foreign Land" and wanted to let you know if you didn't read it already that I thought it would be a great book for you to read to help deal with all this. It has challenged me quite a bit as I have been quite afraid of Asenath's decline over the last 6 months. It is so scary that she just won't eat and has constant diarrhea. It has been especially bad today with more than 10 diapers with pure liquid, especially knowing she won't drink or eat for us today. The Pediasure is our only hope for her not becoming dehydrated. But, I know God is control and knows what he is doing. That is a comfort to me when I start to panic about the future. Hope you are at peace tonight, knowing God has you in His loving arms. Darla: mom to Asenath back from the hospital Hi thereWell, we had our MRI on Friday and they ended up keeping overnight for observation. This was the first time he was put under since they discovered the cardiomyopathy and hypoventilation so they were a little nervous about it. The MRI lasted two hours...I was getting alittle concerned but since they just got these new machines (thurs wa sthe first day for them to use them) I was hoping they were just playing. The Radiologist actually caleld to get history himself and then called back with the results...very impressive...anyway, has two things that did not show up in October Cerebral Atrophy and Periventricular white matter disease (or deterioration). The first causing his motor issues and strokes and the latter is quite serious and explains the dementia and siezures and such...also makes his prognosis that much more serious. I asked him about Adrenoluekodystrophy which has always been in the back of my head and he said while it didn't look like that, it was the same area of the brain which could explain why his disease has been so progressive and mirroring ADL more than mito. I still haven't gotten to talk to our neuro (someone else was on weekend rounds) or Dr Korson but am planning to speak with them tomorrow.The wanted to keep him bc/ it appears his cardiomyopathy is really starting to take a toll on him...his heart rate and blood pressures are really off. His sats ended up dropping in the night and so we now have oxygen at night...hospice sent it right out. He is getting a hospital bed on Monday b/c he is falling out of the bed (has a big nasty lip to show for it) and becasue they want his head elevated some to see if that will help with the hypoventilation.All in all...just confirmation after confirmation that his disease is progressing and how unstable he is right now. I am sad about the news but feels if just verifies what my guts were telling me....of course, always hoping they are wrong wrong wrong...anyone with knowlege about cerebral atrophy or periventricular white matter issues in mito, please write on or off list...thanks guysdeb Please contact mito-owner with any problems or questions.

February 10, 2003

Huge big hug to you, Deb. I am so sad to hear the latest about . Will keep you in my prayers. Hope you have helpful conversations with Dr. Korson and your neuro.

Maggie

somewhere along the very very bad week we had, I read your email about Mame's surgery and also the haircut! I know the haircut gave you some woman power right? I hope the surgery will giv eyou all a little relief and some free time.

thanks for the above...I am sure Korson will be helpful, never know about anyone else...ha ha!

deb

February 10, 2003

I hope the surgery will giv eyou all a little relief and some free time.

Mame's sinus surgery went just great!! Although the hospital was pretty ridiculous (we weren't at the Floating). Gave me some understanding about what you folks go through who are admitted to places where they've never heard of mito. . .Anyway, Mame feels like herself again for the first time in months. Went back to school for a half day today, and may start whole days on Wednesday. We are so grateful that she's finally feeling better.

Do you like the hospital bed? I bet it makes it easier for both you and . I was so sorry to hear he'd fallen out of bed and hurt himself. Plus of course everything else he's going through these days. And such a handsome little guy.

Still loving having short hair, Deb!

Maggie

February 10, 2003

I hope the surgery will giv eyou all a little relief and some free time.

Mame's sinus surgery went just great!! Although the hospital was pretty ridiculous (we weren't at the Floating). Gave me some understanding about what you folks go through who are admitted to places where they've never heard of mito. . .Anyway, Mame feels like herself again for the first time in months. Went back to school for a half day today, and may start whole days on Wednesday. We are so grateful that she's finally feeling better.

Do you like the hospital bed? I bet it makes it easier for both you and . I was so sorry to hear he'd fallen out of bed and hurt himself. Plus of course everything else he's going through these days. And such a handsome little guy.

Still loving having short hair, Deb!

Maggie

February 10, 2003

I hope the surgery will giv eyou all a little relief and some free time.

Mame's sinus surgery went just great!! Although the hospital was pretty ridiculous (we weren't at the Floating). Gave me some understanding about what you folks go through who are admitted to places where they've never heard of mito. . .Anyway, Mame feels like herself again for the first time in months. Went back to school for a half day today, and may start whole days on Wednesday. We are so grateful that she's finally feeling better.

Do you like the hospital bed? I bet it makes it easier for both you and . I was so sorry to hear he'd fallen out of bed and hurt himself. Plus of course everything else he's going through these days. And such a handsome little guy.

Still loving having short hair, Deb!

Maggie

February 11, 2003

Thanks

So far he seems he is happy with it...I got him a new comforter and tied balloons to his (and my other kids) bed...he is even asking for the oxygen...we had been waiting until he was asleep to put it on...it did cause a nasty nosebleed but they brought us a humidfier attatchment thingie. He is doing better overall...not screaming allt he time which was siezure and pain problems...but is more and more babyish I think.

thanks for the tip...I remember seeing that at Target and will get that if it seems a problem.

deb

February 11, 2003

Just a brief note here for Deb. I know those hospital mattresses

can be pretty "firm" and am not sure if that would bother at all.

But you can go to Walmart, Target or if you have a Shopko and they have

those egg crate foam pads in twin, full, Queen, or King size. My

son was complaining of his mattress and I got a full size one. It

was around $12 for a full size. And it does make the mattress feel

softer and you don't feel the bumps in the mattress. But then again

isn't sensitive to that stuff. So you might want to consider

that. I just remember my dad needing one when he was in a hospital

bed at home, and I remember how firm they were from being in the hospital

having my babies. Good luck with the bed and I'm thinking about you

and your family.

'

Nerenhausen mom to Leah

orrmullane@... wrote:

In a message

dated 2/10/2003 9:01:42 AM Eastern Standard Time, VisibleWorship@...

writes:

I

hope the surgery will giv eyou all a little relief and some free time.

Mame's sinus

surgery went just great!! Although the hospital was pretty ridiculous

(we weren't at the Floating). Gave me some understanding about what

you folks go through who are admitted to places where they've never heard

of mito. . .Anyway, Mame feels like herself again for the first time in

months. Went back to school for a half day today, and may start whole

days on Wednesday. We are so grateful that she's finally feeling

better.

Do you like the

hospital bed? I bet it makes it easier for both you and .

I was so sorry to hear he'd fallen out of bed and hurt himself. Plus

of course everything else he's going through these days. And such

a handsome little guy.

Still loving

having short hair, Deb!

Maggie

Please contact mito-owner

with any problems or questions.

February 11, 2003