View Single Post
Old 08-12-2008, 10:32 AM
HiHo HiHo is offline
Junior Member
 
Join Date: Jul 2008
Posts: 14
15 yr Member
HiHo HiHo is offline
Junior Member
 
Join Date: Jul 2008
Posts: 14
15 yr Member
Default

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

Quote:
Originally Posted by erinhermes View Post
Hey Heidi! I'm so sorry to hear about Dallas! I think about him (and you) all the time and still keep you in my prayers - know that there are a LOT of people praying him. So, his eyes are doing that weird "twirly" thing? That's what made me go into the hospital again for plasmaphoresis and THEN IVIG for a total of 9 treatments.....I loved the IVIG - hated the other - too invasive for me.........It has been rough, but I know that remission is just around the corner for both your precious son and myself - I just keep praying daily .......Are the docs thinking about IV IG for Dallas? Now you will hear from others that have not had good experieces with it, but for me it was a life saver - truly. If the docs sign off off on it, it may be a good thing to explore. Plus, when they do get the PICC line in it will be a breeze to get his labs done. What are the docs saying about him feeling so yucky so soon after the thymectomy? Are they giving you any info? You do have good docs, right? They are key, b/c half the people that I have heard from seem to have crappy docs that aren't nearly aggressive enough, and they suffer needlessly........ whereas my doc gets me into the hospital whenever I start to feel sick, but the medical kills are really starting to pile up........Please know that you and your baby are in my prayers and thoughts daily, and I'm so sorry that you are having to go through this. If/when you do go back let me know where you are so I can send Dallas a little something to keep him occupied in the hospital - what type of stuff does he like? Let me know if you need anything.....Erin
HiHo is offline   Reply With QuoteReply With Quote