Yes, have the time of your life! Have a blast! You deserve it ! Don't let the thoughts of anyone of us enter your head while your laying in the sun, drinking something "fruity" and watching all the babes on the beach. Have a great time, hear from you when you get back ! (that is if you come back ha...) Love yas....
We have have a hard week. Henrys feeding tube is all blocked up. So, when we turn the pump on at night, it will only drip for about 20 minutes and then start beeping. It is very difficult because he needs this nutrient and his tube inside his body is all plugged up. So, I am off to get more Coke today to try to clear it up. Hopefully it works. He is getting weaker by the day, however, he still maintains a good disposition. I am so lucky. He could be really mean and angry and not want to co-operate with any of us, but we love him and try to keep him as comfortable as possible. He is on a lot of pain medication now, however he still has a clear mindset. That is so important to him and also to us. So, we go on minute to minute. We laugh, smile, kiss, hug and share memories and love that no one could even begin to understand. Damn als ! Anyway, that is our life and we really appreciate all the help and support we get from all. Have a good day everyone, must run to the mall...... Xmas shopping ugh ! How are you Theresa? Hope you are hanging in there. Will talk soon.
oh carol, poor henry! how frustrating! you think the tube will be helpful and then stuff like this happens! i'm so glad that you and he are so close! love makes the world of difference! dave makes my world sing! i don't know how i'd be without his love and support! you and henry just keep on laughing! we'll laugh too!
Laughter is truly the best medicine. And when you add love to that, you have a very powerful combination. It gets you through days that you did not think were possible to get through. How are you feeling? Soounds like your Dave us a great guy. Anyone that can make your heart sing gets an A in my books. You are very lucky. All day we have been pumping Henry with Coke. He is laughing right now, he says he is a Coke junkie. ha... He never has in his entire life drank a coke , ever ! Now we are pumping him full of it. He says the only thing it is missing is the rum. ha.. Yeah, yeah, hopefully this will clear out the cobwebs in the tract. He is so tiny now, he needs all the formula we can get into him. Ted, did you have this problem with Mary? Did you ever have the problem of blockage in the tract itself? If so, what did you do? We have the gas problem under control now, hopefully, he won't end up in the ER again. Anyway, hope you are getting ready for the Big Guy, and no, thats not you Ted. ha.. Keep smilin dear, and I will talk to you soon.
Carol, I read your message at work, and between hearing that Henry is getting weaker, picturing you trying to fix it all, while making sure Christmas is in order, hell, I haven't even started, all during the moments I heard the "Christmas Canon" by Trans-Siberian Orchestra on the radio, I was fighting the tears. Where does this energy come from? How do you manage to juggle this all...Henry has never had a coke before? Rum does mix well with it....makes me wonder how the "Cuban" tourists are making out. You are right, love and laughter is the best medicine, and I bet that is why Henry is still with you. It is the love that gives you strength to get up every day, many mornings I suspect without much rest. I am hanging in without anything new to report. I sent an email out a couple of days ago, not that I expected any reply, trying to stir up his insides a bit, telling him my position,and saying that I am here, but if he doesn't come clean soon, I will remain silent. Hard to do, but I hope he reads it, sure he will at some point, I know he will think about what I have written, and if he does open his email, seeing there are no more messages from me, will at some point give him a shake. Not my choice of action, but I am at the point, I see no other choice. Kinda sucks during the holidays. I worry about him, and how his health is. He is a private person, and I think for so long his opinions and feelings have been ignored, so he shuts down during periods of stress and doesn't talk. I have tried to free him of that, and have had successful moments where I have given my head a shake as he has spoken. So the issues I am having with him is a pattern of who he is, if we were living together, I could get him to talk, because when we are face to face, and I push, he lets it out. He is in a corner then, and has little alternative. I guess I didn't push harder when the opportunity was there. The ALS has exaggerated the situation, and I suppose what ever meds he is taking has side effects. I don't know what he is on now, but I do know that they have changed them several times since August, one was giving him high blood pressure, a condition he has never had, one they had him on last year with the MS diagnosis, turned him into a crazy monster one day, and a gentle lamb the next. I am holding firm, he has to come to me...sorry for the outburst here, I guess the forum is getting what I would say to him. Hold on to Henry, hold him and love him..you are amazing.
Debbie, you sound like you have a good man in Dave. And your positive upbeat manner will help you and he reach these challenges, and prepare for the research. Five children between you...I have four, am the same age you are, but with Dave by your side, anything can happen.
You guys are great and we need to pray for each other.
Did you get the syringe with the G-tube? We never had a blockage that couldn't be cleared. What I did was run a load of warm water through the tube immediately after each feeding (probably about 100 cc's) and a syringe load again immediately before the next one.
If Henry is losing mass maybe he should be getting a bit more of the Nutrisource or whatever it is that he is using...
The whole interaction among you guys communicating brings back a lot of memories for me. Not to minimize anybody's work... but I believe that it is so much easier to intuitively know what's going on with a non-verbal ALS patient if you've lived with them for oh say 20 or 30 years! I usually knew what Mary needed however, she could screw me up from time to time when I wasn't paying attention. When that happened there was always a big laugh to let me know how stupid I was!
I imagine that after 20 or so years that you are on eachother's wavelength...but then again us guys are pretty much straightforward. You know... scratch me, feed me, beer me and.............! With women, us poor guys have to stay on our toes... because really who knows what's on a woman's mind?
Take care and let me know how you make out with the tube.
Sometimes the inside opening of the tube can be up against the stomach
wall making it appear clogged. The stomach moves around & changes shape &
sometimes just twisting the tube will free it up. As long as you're rinsing &
using liquids it shouldn't clog. Crushing pills & dissolving them in plenty of
water shouldn't be a problem either. The plunger should clear it easily. I've
poured Pepsi in mine on occasion but haven't had a clog in 5 years. I have a
20 French size & replace them every 4-6 months because the caps wear out &
David Dx 6/96 Vent 1/00
Don't forget to live!
Thank you, one and all, for the advice on the clogged tube. I
ran everything but a truck through it last night (flushing warm
water, then soda [now, THAT was fun!] through it). This morning, I
got a suggestion to use an empty syringe and draw the plunger UP, to
see if that would break the clog, or show me what it was. It must
have resolved itself while I slept because I'm able to use it
again. I just had visions of it being clogged all weekend long and
not getting enough hydration. Every suggestion made will be kept
for the next time. Since I'm still able to swallow pills, the
additional suggestion of more hydration via the tube around pill-
time is another good one.
Susan: We have had the same problem sometimes, with Jorge´s PEG (24 fr), but
the last thing we did, was to take a suction machine and put a slim catheter
#10 into the tube and suction with the machine. That worked!.
Don´t worry, because every time that happened, we have been able to
You all have been so helpful. Right now as of monday morning, we seem to have unplugged the blockage. We flushed with coke, warm water, and moved him around quite a bit. Then on sunday afternoon, we sat him up and gave him a feed in his lazyboy. All of this, and a few prayers, seemed to help. We gave him 3 cans of Isosource overnight and everything went well. Hopefully it will stay that way. Giselle, thanks for finding those posts for us. They were really helpful and I am sure that that info will still come in handy. Ted, you should be able to read womens' minds like no other. Having lived with 4 of them for sooooo long. You should be a master. Or, they have taught you to just stay mum! Womans opinions can quite often outweigh a man's intellect anyday. We just know what buttons to push ! Again, thanks all, I must fly to work, and dream of suhshine, beaches, fruity and booty! Love to all..... Henry says thanks too.....