Vitalady???
Last time Michelle updated us, things were still a struggle. I'd love to hear an update again, and do hope she's better.
Meanwhile, I'm sorry you had the shingles! Are you recovered?
Hope the job change was a good one, too!
Meanwhile, I'm sorry you had the shingles! Are you recovered?
Hope the job change was a good one, too!
5'4 CW: 130, GW: 130
Springtime Challenge to reach goal of 130 in spring MET!!!
Springtime Challenge to reach goal of 130 in spring MET!!!
Not sure when I last posted, so I'll post the whole thing. But as of today, he started driving again, does everything in slow motion. He's regained to about 160, but needs to be 180 or so.
***
* * * * * * Updated 11/28 at the bottom * * * * *
*** This is my apology for any abruptness of replies and my delinquency in responding. Here is the long and short of my status. August 20, Don acquired a very serious kidney infection. Although he recovered, he was very ill for 2 weeks. When he finished his course of antibiotics and was cleared, then he really got sick.
He was OK at 3 am early the morning of Sept 7, but at 6 am he was on the floor unable to move. He felt chest pain (a spasm, is how he describes it now) and planned to stand up and walk it off. There seems to be a 3-4 second gap in his memory. I heard a loud THUD and he was on the floor. He can't say if his bad knee crumpled or if he lost consciousness or perhaps the paralysis had begun.
In any case, when he fell, he hit his head on (?) something unforgiving and it snapped his neck backward breaking/displacing C-4. The nerve damage was immediate and he became a Spinal Cord Injury patient.
The local EMT's responded immediately and the ER team was excellent in diagnosing his issue and ruling out any possibility of heart or stroke issues. We still don't know what the chest pain was (not strong) and we still don't know why he went down.
He was transferred and had surgery 9/9 (they waited for swelling to go down). They fused C 3-4-5-6. He began to have movement again in his hands/fingers/legs. But it will be months before these things work well. This surgery is done via the throat and back of his neck and a drain was installed in his throat area. All this causes swelling in his throat area and he cannot swallow.
He was moved to in-patient rehab at the closest hospital. They did swallow studies and his problem seems to be mechanical, not more nerve damage. He does PT, OT, ADL and speech therapy all day.
As of 9/22, he is home, with all kinds of scary equipment. My decor is Modern Hospital these days. He can speak again, but is being tube fed. The danger of his aspirating his own saliva is still present. His swallowing is improving, but the swelling from the damage and fixit surgery are still making his throat too snug for much to pass.
We were trying to work with the tube feeding and doing OK, except it blocked twice. If you're seeing a tube like an IV line, no. It's a pediatric line, smaller in diameter than a paper clip. HOWEVER, Sunday night it decided it didn't like Don and started to just come out. I suspect he bumped it in the shower and we can't slide it back in without being under fluoroscopy.
The neurosurgeon took the neck brace Monday. The ENT said he was at a Crossroads. Either he can get past the swallow issue at this point or they re-place the tube. If he gains wt, he's home free. If he loses any more (he's lost 30# in a month), back in with the tube.
Then there's me. My bladder slammed shut and I had to go to ER to get it un-slammed. I did call my doc office and sure, they could've determined that it was a bladder infection (didn't act like one), but they would have sent me to ER anyway.
Walgreen's Rx thinks we're stalking them by now.
Oct 14 Visit to ENT today. Unfortunately, Don gained a few lbs, but then lost them when his throat pretty much closed up tight. Tomorrow, surgical visit to install G or J tube. No more teensy NJ tube smaller than Angel Hair pasta. We need to be able to pump stuff in at a faster rate and not worry about it jamming.
His arms/legs/hands are doing VERY well, according to his OT, PT, RN that visit at home (til these benefits run out).
In the meantime, the first actual bills are starting to roll in. What I'd seen before were initial bills before insurance or EOB's only. Thanks to you, I was able to pay the ER visit for the kidney infection promptly.
Just the words "thank you" are not enough. At all. But we both say them, anyway.
Oct 15 Happy bday to me. Admitted him to hospital again. He will have surgery tomorrow to install a J-tube and fix a birth defect. He was never willing to fix that defect before, but the procedures are in the same neighborhood, so he finally agreed to it. We are scared, this time. Both of us. I hated to leave him alone but fortunately, he's so weak, he fell asleep.
Again, thank you guys. For the various types of help offered and received. You'll never know what it means to us.
Oct 17 - Don is doing very well. By fixing that birth defect now, we apparently dodged a bullet. there was another problem growing there. had this surgeon just installed the feed tube, he'd never have seen that area. OMG. it woulda kept on silently doing damage until ... well, a disaster. as it is, that issues is solved. So, 3 birds with 2 holes in gut. As I said, doing very well. Way perkier than *I*'d ever be, that's for sure.
Oct 20: he spiked a fever the other night, acting like pneumonia but they call it "diminished capacity". I'm also nervous about a UTI. He was totally healthy til the kidney infection. Since the fall, C-4 turns off the bladder, as well as arms/legs, so while not continuously cath'd, more than once, so more chance of infection.
Yesterday, he was up for a few hours sitting, but he was overtaxed to the max. They took out his IV and he gets everything via his shiny new J-tube. Once again, let us remind ourselves that ALL of this has nothing to do with his WLS. The spinal cord injury shut off his throat.
i have not any clues when he might get out. while visiting him yesterday i spilled water on my phone and disabled the keyboard. drop everything and off to verizon,. they had no direct replacement, and since all the medical ppl have that phone #, couldn't wait. so, early upgrade and learning curve.
If anyone is trying to talk to me, proceed, but I won't have time to really look it over til i get to the hospital today.
Oct 23: he came home yesterday. i spent 4 hrs to fill rx. don't make it in liquid. doc office insists they do and explains to me why we cannot crush the pills, which we just did for 10 days. so, she calls around, finds liquid.
my Prius is ready at last, after the complete rebuild of the dash to repair the damage Car Toys did to it. I get there expecting to turn on my Sirius satellite. I'm paid for 6 more months. Tech says, "No, it's XM", so I say more slowly, "No, I have Sirius--that's why i left all the numbers with you." worse than talking to medical ppl! OMG. I have now paid a big chunk of money which was not mine to pay (Car Toys? See ya in court Jan 4) for not what I wanted. I am OH SO HAPPY. Dead parts? oh yeah, a box the size of a small coffin in the back.
Get home and need to crush meds, get them into Don, put the liquid in, get some water and protein in, start the feed, find the instructions,, get him comfy.
He got home at 3:30, my butt finally tried to sit at 10:30 and then up and down for another half hour before I was wound so tight even the cats didn't look at me.
I think I slept for a few minutes last night. Did have my bfast before the home health nurse came to tell us we were doing everything wrong. Sure, I can see how I'm going to get 30 hours worth of feed into him every 24 hours and water, and meds, and flush. (nod and smile after realizing that the simple of math wasn't working for her). I will feed as best I can meeting our WLS needs above all else.
I'm tired. I'm grumpy. It's probably better for all of I do not open my mouth since 60 days worth of tired and angry might spew.
Oct 29 Went to ENT. No change in swallowing. Discussion of actually going back in and adjusting the plate holding the vertebrae in place. Later. He will talk to the neurosurgeon.
The abdominal surgeries are going well, considering. But I just can't pump food into the tube fast enough to put weight on him. We see the surgeon next week. He is rather depressed at this point, since his PT, OT and all that is coming to an end (insurance). They can't really do much more but encourage him to do what they taught.
Even though there is no forward progress, there is also no backward regress.
Nov 5 Well, ,that tiny seroma we saw, took to PCP and then general surgeon? Not so simple. MRSA. It's 1" from the two abdominal wounds. Scares me.
His color is way better, but he hasn't gained any wt yet. The surgeon said he's there for us, but he has no more formal appts for now. PCP is rx the antibiotics, surgeon gave us instructions for wound care.
Leslie is making me eat. She checks my vites to see if I am due food. Not sure if she is worse than Alice or her wicked Protege in the fine art of Food Policement.
Nice to feel loved.
Nov 15 Went to the ENT today. But a few things have changed. Our massage guy was here Thursday, and he touched Don's throat area. What can he do , right? After that, Don began to be able to eat some fork-soft (not drooly spoon soft) foods. He can eat toast. He still coughs, but can eat a portion. Before, he just coughed most of it back out. The ENT says the view is better, epiglotis is looking like it should. Good. Dang thing flapping around in there was what was letting food go down the windpipe. So, need to schedule a special swallow to see where the issue lies today, vas 9/21 when the last was done.
Leslie took wondrful care of us. I didn't lose any wt, and got all my portions in. Don got extra protein, so with the "candy" (rx formula), he's getting over 200g per day.
Nov 28: don is still able to eat now. He can eat most foods with minimal coughing/chocking. Massage o the throat area seems to have done the most good.
Both of us are exhausted because the treatments, dressing changes, tube feeding, doc appts and so on, go on and on. I wake up several times per night to be sure his machines are running and clacking as they should. I think he wakes up, soo, but we haven't run into each other for awhile.
So far, so good. Many thanks again for prayers, well wishes and all you've done for us.
***
* * * * * * Updated 11/28 at the bottom * * * * *
*** This is my apology for any abruptness of replies and my delinquency in responding. Here is the long and short of my status. August 20, Don acquired a very serious kidney infection. Although he recovered, he was very ill for 2 weeks. When he finished his course of antibiotics and was cleared, then he really got sick.
He was OK at 3 am early the morning of Sept 7, but at 6 am he was on the floor unable to move. He felt chest pain (a spasm, is how he describes it now) and planned to stand up and walk it off. There seems to be a 3-4 second gap in his memory. I heard a loud THUD and he was on the floor. He can't say if his bad knee crumpled or if he lost consciousness or perhaps the paralysis had begun.
In any case, when he fell, he hit his head on (?) something unforgiving and it snapped his neck backward breaking/displacing C-4. The nerve damage was immediate and he became a Spinal Cord Injury patient.
The local EMT's responded immediately and the ER team was excellent in diagnosing his issue and ruling out any possibility of heart or stroke issues. We still don't know what the chest pain was (not strong) and we still don't know why he went down.
He was transferred and had surgery 9/9 (they waited for swelling to go down). They fused C 3-4-5-6. He began to have movement again in his hands/fingers/legs. But it will be months before these things work well. This surgery is done via the throat and back of his neck and a drain was installed in his throat area. All this causes swelling in his throat area and he cannot swallow.
He was moved to in-patient rehab at the closest hospital. They did swallow studies and his problem seems to be mechanical, not more nerve damage. He does PT, OT, ADL and speech therapy all day.
As of 9/22, he is home, with all kinds of scary equipment. My decor is Modern Hospital these days. He can speak again, but is being tube fed. The danger of his aspirating his own saliva is still present. His swallowing is improving, but the swelling from the damage and fixit surgery are still making his throat too snug for much to pass.
We were trying to work with the tube feeding and doing OK, except it blocked twice. If you're seeing a tube like an IV line, no. It's a pediatric line, smaller in diameter than a paper clip. HOWEVER, Sunday night it decided it didn't like Don and started to just come out. I suspect he bumped it in the shower and we can't slide it back in without being under fluoroscopy.
The neurosurgeon took the neck brace Monday. The ENT said he was at a Crossroads. Either he can get past the swallow issue at this point or they re-place the tube. If he gains wt, he's home free. If he loses any more (he's lost 30# in a month), back in with the tube.
Then there's me. My bladder slammed shut and I had to go to ER to get it un-slammed. I did call my doc office and sure, they could've determined that it was a bladder infection (didn't act like one), but they would have sent me to ER anyway.
Walgreen's Rx thinks we're stalking them by now.
Oct 14 Visit to ENT today. Unfortunately, Don gained a few lbs, but then lost them when his throat pretty much closed up tight. Tomorrow, surgical visit to install G or J tube. No more teensy NJ tube smaller than Angel Hair pasta. We need to be able to pump stuff in at a faster rate and not worry about it jamming.
His arms/legs/hands are doing VERY well, according to his OT, PT, RN that visit at home (til these benefits run out).
In the meantime, the first actual bills are starting to roll in. What I'd seen before were initial bills before insurance or EOB's only. Thanks to you, I was able to pay the ER visit for the kidney infection promptly.
Just the words "thank you" are not enough. At all. But we both say them, anyway.
Oct 15 Happy bday to me. Admitted him to hospital again. He will have surgery tomorrow to install a J-tube and fix a birth defect. He was never willing to fix that defect before, but the procedures are in the same neighborhood, so he finally agreed to it. We are scared, this time. Both of us. I hated to leave him alone but fortunately, he's so weak, he fell asleep.
Again, thank you guys. For the various types of help offered and received. You'll never know what it means to us.
Oct 17 - Don is doing very well. By fixing that birth defect now, we apparently dodged a bullet. there was another problem growing there. had this surgeon just installed the feed tube, he'd never have seen that area. OMG. it woulda kept on silently doing damage until ... well, a disaster. as it is, that issues is solved. So, 3 birds with 2 holes in gut. As I said, doing very well. Way perkier than *I*'d ever be, that's for sure.
Oct 20: he spiked a fever the other night, acting like pneumonia but they call it "diminished capacity". I'm also nervous about a UTI. He was totally healthy til the kidney infection. Since the fall, C-4 turns off the bladder, as well as arms/legs, so while not continuously cath'd, more than once, so more chance of infection.
Yesterday, he was up for a few hours sitting, but he was overtaxed to the max. They took out his IV and he gets everything via his shiny new J-tube. Once again, let us remind ourselves that ALL of this has nothing to do with his WLS. The spinal cord injury shut off his throat.
i have not any clues when he might get out. while visiting him yesterday i spilled water on my phone and disabled the keyboard. drop everything and off to verizon,. they had no direct replacement, and since all the medical ppl have that phone #, couldn't wait. so, early upgrade and learning curve.
If anyone is trying to talk to me, proceed, but I won't have time to really look it over til i get to the hospital today.
Oct 23: he came home yesterday. i spent 4 hrs to fill rx. don't make it in liquid. doc office insists they do and explains to me why we cannot crush the pills, which we just did for 10 days.
my Prius is ready at last, after the complete rebuild of the dash to repair the damage Car Toys did to it. I get there expecting to turn on my Sirius satellite. I'm paid for 6 more months. Tech says, "No, it's XM", so I say more slowly, "No, I have Sirius--that's why i left all the numbers with you." worse than talking to medical ppl! OMG. I have now paid a big chunk of money which was not mine to pay (Car Toys? See ya in court Jan 4) for not what I wanted. I am OH SO HAPPY. Dead parts? oh yeah, a box the size of a small coffin in the back.
Get home and need to crush meds, get them into Don, put the liquid in, get some water and protein in, start the feed, find the instructions,, get him comfy.
He got home at 3:30, my butt finally tried to sit at 10:30 and then up and down for another half hour before I was wound so tight even the cats didn't look at me.
I think I slept for a few minutes last night. Did have my bfast before the home health nurse came to tell us we were doing everything wrong. Sure, I can see how I'm going to get 30 hours worth of feed into him every 24 hours and water, and meds, and flush. (nod and smile after realizing that the simple of math wasn't working for her). I will feed as best I can meeting our WLS needs above all else.
I'm tired. I'm grumpy. It's probably better for all of I do not open my mouth since 60 days worth of tired and angry might spew.
Oct 29 Went to ENT. No change in swallowing. Discussion of actually going back in and adjusting the plate holding the vertebrae in place. Later. He will talk to the neurosurgeon.
The abdominal surgeries are going well, considering. But I just can't pump food into the tube fast enough to put weight on him. We see the surgeon next week. He is rather depressed at this point, since his PT, OT and all that is coming to an end (insurance). They can't really do much more but encourage him to do what they taught.
Even though there is no forward progress, there is also no backward regress.
Nov 5 Well, ,that tiny seroma we saw, took to PCP and then general surgeon? Not so simple. MRSA. It's 1" from the two abdominal wounds. Scares me.
His color is way better, but he hasn't gained any wt yet. The surgeon said he's there for us, but he has no more formal appts for now. PCP is rx the antibiotics, surgeon gave us instructions for wound care.
Leslie is making me eat. She checks my vites to see if I am due food. Not sure if she is worse than Alice or her wicked Protege in the fine art of Food Policement.
Nice to feel loved.
Nov 15 Went to the ENT today. But a few things have changed. Our massage guy was here Thursday, and he touched Don's throat area. What can he do , right? After that, Don began to be able to eat some fork-soft (not drooly spoon soft) foods. He can eat toast. He still coughs, but can eat a portion. Before, he just coughed most of it back out. The ENT says the view is better, epiglotis is looking like it should. Good. Dang thing flapping around in there was what was letting food go down the windpipe. So, need to schedule a special swallow to see where the issue lies today, vas 9/21 when the last was done.
Leslie took wondrful care of us. I didn't lose any wt, and got all my portions in. Don got extra protein, so with the "candy" (rx formula), he's getting over 200g per day.
Nov 28: don is still able to eat now. He can eat most foods with minimal coughing/chocking. Massage o the throat area seems to have done the most good.
Both of us are exhausted because the treatments, dressing changes, tube feeding, doc appts and so on, go on and on. I wake up several times per night to be sure his machines are running and clacking as they should. I think he wakes up, soo, but we haven't run into each other for awhile.
So far, so good. Many thanks again for prayers, well wishes and all you've done for us.
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
I was wondering there for awhile. I had like 4 hrs of chores each morning before I could even be Vitalady. I was being Michelle, taking care of cats, dogs, misc lil jobs, changing dressings, setting up feeds, feeding by syringe (into the tube), laying out what vites and meds go in when. I was exhausted before I even put on my Vitalady suit.
Now Don can do much more for himself, so only 2 hrs of chore. LOL But now I do at least an hou per day setting up or moving doc appts, ordering his supplies or unscrambling medical insurance stuff. We changed ins 10/1 (not my idea--our old plan vanished) and so half is billed the old way with that deductible and half is billed the new way, with a different deductible and so on. Stack is perhaps 3" tall?
Now Don can do much more for himself, so only 2 hrs of chore. LOL But now I do at least an hou per day setting up or moving doc appts, ordering his supplies or unscrambling medical insurance stuff. We changed ins 10/1 (not my idea--our old plan vanished) and so half is billed the old way with that deductible and half is billed the new way, with a different deductible and so on. Stack is perhaps 3" tall?
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
Wow, Michelle - your strength is inspiring! (Do you feel it?)
Continued prayers for you and Don. This latest update is much better news (he wasn't able to eat anything, and you were worried about his protein, though the docs didn't seem to be responding to that concern sufficiently) last I heard.
I hope more of your days will have longer moments of peace for you, Michelle!
-Rosa
Continued prayers for you and Don. This latest update is much better news (he wasn't able to eat anything, and you were worried about his protein, though the docs didn't seem to be responding to that concern sufficiently) last I heard.
I hope more of your days will have longer moments of peace for you, Michelle!
-Rosa
5'4 CW: 130, GW: 130
Springtime Challenge to reach goal of 130 in spring MET!!!
Springtime Challenge to reach goal of 130 in spring MET!!!
No, don't feel inspired or inspiring. Minimal survival is how it feels.
I hope some of the fires will put themselves out.
About the whole thing with Dodge, we got a form letter from Ford, which offers the clone of our truck in a Ford. I am OH SO TEMPTED to drive to our dealer (who didn't really do anything wrong) and wave it around and say, "And I want a Dodge because............. why?"
Refresher: bought new 07 but in 08. New brakes at 26k, new clutch at 32k, new batteries at 36k. We JUST got to that 36k and haven't completed 36 months. Yes, they are consumables, but dang, shouldn't we have more than a few minutes to consume them?
Waving around the Ford letter wouldn't do a thing for squeezing a few bucks outta Dodge, but wow, I'd feel better to vent.
Our date with Car Toys in small claims is 1/4. As much as I love confrontation (NOT AT ALL!), if it was this week, whoever they send would be hanging in strips from the framework of the dash they destroyed. Yes, I'm bringing it to court. Looks like a coffin. It is the entire dash frame, window to window.
The guy who actually sold us our defective RV was hre yesterday. His wife has a DS. HE would not have known our rig was defective, no way. And he no longer works there, but he thought he had some contacts that might speed the process of 1000 denials to get to the point of the mfr having to admit this rig was born bad.
Like I said, I'm just spoiling for a fight right now. But Lab Corp keeps billing me for a test I never had (I woul dknow if I peed in the jug, I think) and I keep not paying for it and my insurance won't pay for it. So, we call Lab Corp every month and explain that I never took the test, wrong code, rebill with correct code and get paid. But they refuse to accept that they have two tests using the same code. One is blood (I did that one) and one is urine. Didn't do it. So, at least I can vent regularly to them.
No, not at all strong or inspiring, just feeling under attack from too many angles. And 3 weeks ago, I had to help a rescued kitty over the rainbow bridge.
I hope some of the fires will put themselves out.
About the whole thing with Dodge, we got a form letter from Ford, which offers the clone of our truck in a Ford. I am OH SO TEMPTED to drive to our dealer (who didn't really do anything wrong) and wave it around and say, "And I want a Dodge because............. why?"
Refresher: bought new 07 but in 08. New brakes at 26k, new clutch at 32k, new batteries at 36k. We JUST got to that 36k and haven't completed 36 months. Yes, they are consumables, but dang, shouldn't we have more than a few minutes to consume them?
Waving around the Ford letter wouldn't do a thing for squeezing a few bucks outta Dodge, but wow, I'd feel better to vent.
Our date with Car Toys in small claims is 1/4. As much as I love confrontation (NOT AT ALL!), if it was this week, whoever they send would be hanging in strips from the framework of the dash they destroyed. Yes, I'm bringing it to court. Looks like a coffin. It is the entire dash frame, window to window.
The guy who actually sold us our defective RV was hre yesterday. His wife has a DS. HE would not have known our rig was defective, no way. And he no longer works there, but he thought he had some contacts that might speed the process of 1000 denials to get to the point of the mfr having to admit this rig was born bad.
Like I said, I'm just spoiling for a fight right now. But Lab Corp keeps billing me for a test I never had (I woul dknow if I peed in the jug, I think) and I keep not paying for it and my insurance won't pay for it. So, we call Lab Corp every month and explain that I never took the test, wrong code, rebill with correct code and get paid. But they refuse to accept that they have two tests using the same code. One is blood (I did that one) and one is urine. Didn't do it. So, at least I can vent regularly to them.
No, not at all strong or inspiring, just feeling under attack from too many angles. And 3 weeks ago, I had to help a rescued kitty over the rainbow bridge.
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
I'm actually falling apart about now. Scale slipped under 100# again. Have to force myself to eat, blah, blah.
Too many fires in my life to put them all out.
But I surely do want to thank you for your support here and privately in emails.
Too many fires in my life to put them all out.
But I surely do want to thank you for your support here and privately in emails.
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
Wow, he's driving already. That's great news!
HW - 225 SW - 191 GW - 132 CW - 122
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