Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Happy Birthday ,Lucas and Alison. I hope all those who have been in a crash are feeling better. has had a rough month or so.First she had a sinus infection,treated that with antibiotics.Then she got a cold and had congestion in her lungs,thought it was pnemonia,thank goodness it wasn't,but she spent a day and night in the hospital.This was treated with breathing treatments,they make her very jumpy,but they work.Next her g-tube stopped up,after working on it for several hours we went in to have it replaced.It was stuck and the doc had a really hard time getting it out. Of course just lays there like nothing is happening.Another thank goodness!! The new one stopped up 5 days later,after I worked on it for a couple of hours I gave up and took her back for another one,but as luck would have it by the time we got to the hospital it was working fine. That was 3 trips in 10 days and really doesn't travel well. Then last Thursday the nurse flushed her port,she does this once a month and everytime it seems to take a few days to get over (this really doesn't make any sense because it doesn't seem to bother her at all while she's doing it) sleeps most of the time anyway but this week it has even been more so,she has not been eating,does not want to get out bed,actually just doesn't want to be bothered at all. She is also still coughing a bit. Reflux??? Taking Zantac. We have the percussion vest,which we use when will let us,so far this week that has been 71 mins.Supposed to be 40 mins daily.When she doesn't want to do it,she just fights until you take it off.Other times she doesn't mind it at all. ????? Any way I can't see where it is doing any good when she is using ALL her energy fighting. The good news is we have a new wheelchair ordered. It's the tilt-in- space so maybe she will feel more secure in it. It is also Kentucky "Wildcat" blue and that should make anybody feel better. Speaking of feeling more secure, I ordered a 6 lb "lap" weight. ,I just lay it across her lap when she's in her chair.It give her more of an idea of where she is in space and has made a tremendous difference in how well she sits up. I hope everyone has a wonderful week-end. , Mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 , This is so strange. I was just thinking about yesterday, wondering how she is doing. Then today, Connor was telling me about two girls on his bus, and , so I told him I "know" a girl named . He thought that was quite a coincidence. Funnier still, he went on to mention , also on his bus. I said, "Hey, that's 's mom!" Small world. I am sorry that is not feeling better. I can imagine how it must wear her (and you) out. What causes her tube to stop up? We have yet to have Connor's replaced because of it, although we've had a few clogs now and then. I hope things start improving for soon. Seems she has been having a hard time for awhile now and deserves a break! Take care, mary b Connor's mom - 10 years old - Leigh's/COX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 , This is so strange. I was just thinking about yesterday, wondering how she is doing. Then today, Connor was telling me about two girls on his bus, and , so I told him I "know" a girl named . He thought that was quite a coincidence. Funnier still, he went on to mention , also on his bus. I said, "Hey, that's 's mom!" Small world. I am sorry that is not feeling better. I can imagine how it must wear her (and you) out. What causes her tube to stop up? We have yet to have Connor's replaced because of it, although we've had a few clogs now and then. I hope things start improving for soon. Seems she has been having a hard time for awhile now and deserves a break! Take care, mary b Connor's mom - 10 years old - Leigh's/COX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 , This is so strange. I was just thinking about yesterday, wondering how she is doing. Then today, Connor was telling me about two girls on his bus, and , so I told him I "know" a girl named . He thought that was quite a coincidence. Funnier still, he went on to mention , also on his bus. I said, "Hey, that's 's mom!" Small world. I am sorry that is not feeling better. I can imagine how it must wear her (and you) out. What causes her tube to stop up? We have yet to have Connor's replaced because of it, although we've had a few clogs now and then. I hope things start improving for soon. Seems she has been having a hard time for awhile now and deserves a break! Take care, mary b Connor's mom - 10 years old - Leigh's/COX Quote Link to comment Share on other sites More sharing options...
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