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Old 08-12-2008, 08:24 PM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
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15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
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Hey there! So they are going to do a vascular cath? Is that the one in his neck? Or is that the chest port? They are thinking about putting a permanent port (my hematologist at least) in my arm - that way they can do my IV IG or plasmaphoresis every 3 weeks (if need be - at least until I'm in remission........ ) I would much rather have a port in my arm any day, but that is simply b/c of my intense fear of needles.....I'm actually thinking about going to a therapist abou that - cuz' it has gotten so bad and EVERYTIME I go to the hospital (which is a lot) I end up being a human pin cushion ............Feeling kind of rough right now, so I'll let you go for now! Take care!
Erin]
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Originally Posted by HiHo View Post
Yes, indeed we are back in the hospital...Dallas is waiting to go back to surgery to have is vas. cath put back in...now neuro realizing they shouldn't have pulled it 2 weeks ago. Probably gonna leave it this time, so no more surgeries...anyway he did so great on plasmapheresis last time, they hate not to try again. They said they do it first and if doesn't feel any better they do IVIG. So we will see. We will be here for the next 2 weeks anyway...we do have great docs....he has a whole team of neurologists up here in alabama....they are wonderful to him and they treat about 5 other kids with myasthenia, so that makes me feel more confident. They have had 2 of them go into remission after their thymectomies so far. The docs say, between the thymectomy and school starting he just tuckered out a little quicker than he normally would have after plasmapheresis. So we hope this "tune up" will do him good and boost start him for a good while! Yeah...his eyes go in a weird way... then he starts with the throat trouble...so his doctor down home, doesn't let it get any worse, he sends him the minute I tell him these things are going on...don't want to take a chance of things going bad and having to do more invasive things. So anyway...Dallas is a true boy...loves just anything boyish!! However, sharks are his favorite...he loves to read about them, watch them, and playing with figures of them!!! HOnestly though, you don't need to get him anything. He brought some coloring books and a couple of star wars guys. They keep him pretty busy here with activities when he is feeling good....so thanks a million for thinking of him. We hope all is going well with you and will continue to do so...you are in our thoughts and prayers also...Heidi
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