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dragonflydi

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Well, we survived our first visit to the emergency room. Thanks to everyone on these Forums who posted info about this in the past. I felt we were very well-prepared. Tom was suffering from severe constipation (8 days) and his Visiting Nurse said he should go to the emergency room since all the remedies he had tried were not working. On the recommendation of someone on this forum, I brought our emergency file with all his doctor info, list of meds, typed history of the problem and all his "stuff" (machines, meds, etc.) in case they kept him overnight. Because of previous postings on this site, I wasn't surprised when they said they had never seen an external vent machine like the one he has, nor was I surprised when they asked him to get up on the bed from his PWC. They seemed surprised when he said he couldn't move his legs or torso. You are all so right: they know NOTHING about ALS. When they finally lifted him up onto the bed they kind of "dumped" him, not realizing that he couldn't use his own muscles to let himself down easily. His back went into spasm and they were simply at a loss. I had to do most of the prep work for the procedure: undress him, re-hook him to the vent, move the wheelchair, etc. They gave him three soap enemas with a very long tube and very little results. He was so distressed my heart just broke. Then they gave him magnesium citrate and sent him home with a package of Kristalose to take the next morning if nothing was happening. Nothing was happening, so he took it. Not to give TMI but Oh My did it work. I have gained such respect and admiration for nurses who go through this every day. I couldn't leave him all day so I had to call on friends to get us some pads, Depends, and cleanup stuff. What a day. But today was much better. He ate for the first time in days and feels weak but fine. Whew. Again, thanks to folks on this forum, it was easier than it might have been. --Diane
 

sadiemae

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You might want to try giving him Miralax on a daily basis so this doesn't happen again.
 

cervus

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Glad that you went in so prepared! And glad that it all turned out well. Yasmin.
 

glupavomomiche

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WOW, Diane! Thanks so much for sharing your story! I hadn't heard about having an emergency kit, but it's a great idea, and I will look up the old threads about it! So glad he got relief!

Sadiemae is right about the Miralax. My dietician at the clinic advised me to start with the regular dose (One capful in 4-8 oz of water each morning). After you get a good result, taper back the dose a bit each day until you find that balance that keeps him going comfortably and regularly, and try to "schedule" the BMs at the same time or times each day. I was reluctant to try the Miralax at first, but it's really fantastic stuff. Mixes very well with water, hardly any taste, clear, and does not cause stomach cramps or other side effects!
 

Miss

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Terry took a half dose of Miralax twice a day. If things weren't happening, we upped the evening dose to a full dose. It prevented any problems. Suggestion: follow the ambulance with the hoyer lift in your vehicle.
 

ottawa girl

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MiraLAX in Canada is sold over the counter and called RestoraLAX. Or so the go ogle search reveals.

I'm gonna get me some of that tomorrow. Thanks for the tip.
 

KKay

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We have used the Miralax with success, although a little slow. We also use a juicer and juice carrots, beets, ginger, apples, blueberries, celery etc. You dont have to drink much and it works like a charm within hours for my husband. Downside is it is very time consuming and messy to make. But I found a local Fruit & Produce store that will make the juice for us. They dont advertise but they do make it for people. Also, getting the right combo of fruits and veggies so it is tasty... can be tricky.
 

dragonflydi

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Thank you all for those suggestions. But you're not going to believe this: he had been taking 2 Colace, Colon Pure (a stool softener), Miralax, & 1/2 cup blueberries, 1/2 cup strawberries and a cup of grape juice daily. He also tried Magnesium Citrate from time to time in addition to all of the above. He was really badly impacted. I read on-line that overuse of all that stuff can lead to impaction. And now his doctor says to take Miralax daily along with the Lactulose (which caused the explosion). The Lactulose website says that it's prescription strength Miralax. Now we're really confused.
 

dragonflydi

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First post went to moderation so this might not make sense, but here's an addition to it......Forgot to mention that Tom was also taking Magic Bullet Suppositories as needed and adding 5 prunes to his morning shake. Wish we could take the lift with us to the emergency room, Miss, but it's a ceiling track Voyager lift. Not really complaining, though--it's fantastic and has saved my back. Diane
 

DeansWife

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I'm so happy you were prepared with your "Emergency Kit". You are right, it seems that the medical profession as a whole knows very little about ALS. On our first trip to the ER, Dean was choking very bad and they acted like it was a normal occurance. I finally screamed at them to get a suction going on him or he would strangle to death! They did and were surprised at the amount of gunk that came out. I also agree with everyone about the Merilax. Dean is tube fed, 3 times a day. He is still mostly mobile and I ask him every day - did you poo? If he misses a day then the next morning he gets a dose of Merilax and it seems to be working well, for now at least. He also had a trip to the ER for the same reason, hadn't gone in days. They sent us home with magnesium citrate and it worked. Hope things will calm down for you now and the Merilax works for your hubby.
 

Miss

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Diane,
Check the track system at your hospital. I had to use it the one time that Terry went to the ER. Maybe your slings are compatible.
 

dragonflydi

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We live in a very small town, Miss. No track system in the hospital. They weren't even sure how to get him out of the sling for the procedure so I had to do it. Seems like one of my posts about Miralax got lost in moderation. Tom took Miralax for a week in addition to his Colace, stool softener, Magic Bullet suppositories, magnesium citrate, prunes, grape juice and nothing worked. From what I understand, this new stuff (Lactalose/Kristalose) is prescription strength Miralax. He's having some success with that here at home. We're going to try and do what someone suggested and get him on some sort of a schedule if this stuff works. As it is, I can hardly leave the house for fear he will need me to get him to the bathroom. --Diane
 

dragonflydi

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Back to the ER last night. Tom was sicker than I have ever seen him. We spent the night in the ER and got home at 6:00 a.m. They think it was a reaction to the Lactulose. He started choking and trying to throw up so I called the ambulance. He had chills, nausea, stomach pains and just felt generally awful. The good news was that the nurses and doctor on duty knew a little about ALS and had the suction all ready for him in case he started to aspirate. A good thing too, because he threw up lots of nasty bile. He slept all day and finally woke up to take a little ginger ale and crackers. Whew. I'm a walking zombie and he's pretty exhausted. So glad I didn't have to go to work this morning. I do have to go tomorrow and Weds. though, and I'm not sure what we're going to do. His afternoon aide has broken her arm and his morning aide is on vacation for 2 weeks. Yikes. I make have to take some time off. Our son is getting married in two weeks so he has to bank some energy and stamina so he can enjoy it.
 

panguinjen

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Oh Diane, how awful! I'm so sorry this happened! I'm glad this set of docs had some knowledge...

Jen
 

notme

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I was using stool softeners daily--and they made me stop, as the doc said that after time, they'd stop working and cause the opposite problem.

I'm sure it's different for those with ALS. Wow, he was using a lot of stuff! I'm glad it worked and he's okay now. It's a miserable feeling to be sure.

You're much more forgiving of the hospital's lack of knowledge. I understand that not every doctor has seen every kind of vent--that much I get. But EVERY doctor and EVERY Nurse and EVERY EMT and ER tech knows what "CAN'T WALK" and "Paralyzed" means. And, darn it, even if they haven't seen ALS, they know the basics.

There's no excuse. None. This infuriates me on your and his behalf. Med people just have to do better. ALS might be rare--but there just shouldn't be medical professionals out there working that can't lift and position someone properly!
 
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