kferricks Posted January 27, 2011 Report Posted January 27, 2011 I'm so glad that things went well ! But sorry for 3boysmom being cancelled. Pizza of Boston is yummy up there. Its at the McDonalds rest area. Dr.B told us that if Haley was'nt closer to 100% by Feb 14 we would have to discuss IVIG. Well, she was off meds for 1 week between visits and she backslid on us, and now is holding steady. Would anyone be willing to explain exactly what the child goes through with that? How long each process is? I really like Dr.B.
NancyD Posted January 27, 2011 Report Posted January 27, 2011 Denise, I'm surprised Dr. B didn't have you do CD57. May want to check on that when you are there tomorrow. Certainly if DD's IGX Lyme panel comes out positive you will want that done. It tells you how active the Lyme is and it is good to have a baseline. I'm sorry you had to move to another hotel! I'm hoping the drive over in the morning won't be so bad in the snow. I haven't even looked out the window. DD slept 3 hours after we got back and no headache at all when she woke up. I'm glad we gave her some prednisone. She was also really good about drinking a lot of water (over 100 oz today!). She has a dance to go to Friday night and wanted to make sure she felt okay. We did not leave the catheter (or whatever you call it). She wants to do the other arm tomorrow. Nancy
browneyesmom Posted January 27, 2011 Author Report Posted January 27, 2011 No worries Linda... we're safe and sound, warm and dry - that is all that matters right now! The roads are getting really slick... there is a good 6 inches on the roads now - easy, maybe more. I hope his office will be open in the morning and we get approval for the IVIG from insurance to do this before we go home. She really needs it again. We are back at Doubletree tomorrow if we are here another night. I'm praying you get in here by tomorrow to get your boys in to see him! Please keep us posted when you can. Tami... what is PDA dough? Inbox me your email and I'll be glad to send you my list of questions. Some may not apply for you, so just ignore. Actually, the first couple pages are her symptoms. :/ She's about the same here as she is at home... just more irritable, but nothing like what we saw just before her hospitalization at Christmas, so I figure if we get through a day without calling 911, we're doing ok. PhilaMom, thank you so much for the tip about the top floor - we will check that out as we are members! ShadowTails, when my DD11 had IVIG at Christmas, she had 2g/kg over a period of two days - you can look at my older posts for more details about the infusions that I posted at that time. Each one took about 3.5 - 5 hours, 24 hours apart. Dr. B wants to try her at 1.5 g/kg and will "try" to run it over one day, but it will be an entire day, he said. If she does not tolerate it well or that is too long, we will need a second day. He told me that they pre-medicate... that should help prevent reactions & headaches. She did tolerate it fine at Christmas, so I'm not too worried about that part. They start an IV, run D5 prior, run the infusion and flush with D5 afterward. If you have more questions, just ask... or may want to post separate to draw more attention from others, if you need more info. I hope Haley improves. Nancy, it sounds like your DD's infusion today went really well and wow! She did GREAT on the fluids!! I'm so glad it went well for her, no headache and she actually got some rest... hope that is a good sign for where things go from here for her! Thanks for the tip on the CD 57 - I'll try to remember to ask him about that tomorrow, but certainly before we send it - today was rather chaotic when we met with him.
3boysmom Posted January 27, 2011 Report Posted January 27, 2011 Were here,...we made it! Appointment in one hour.
browneyesmom Posted January 27, 2011 Author Report Posted January 27, 2011 Yay Linda! Stop by the infusion center when you get here! Nancy and I are both here with our DD's today.
NancyD Posted January 27, 2011 Report Posted January 27, 2011 Sorry we'll miss seeing you, Linda, but we are all done. So glad you made it here!! Good luck! Hopefully the roads to Boston will be clear for our drive back. Nancy
browneyesmom Posted January 28, 2011 Author Report Posted January 28, 2011 Nancy, great to see you again today. I really enjoyed meeting your DD & hope she has a great time tomorrow evening! We went to Whole Foods to grab some dinner... you were not kidding - AMAZING salad bar area!! We're back at the hotel now... with our cookies - hehe - and will fly home tomorrow. We're due back in 4 weeks for the next one; we have approval through August for now... Linda, it was so nice to meet you and your family today; your boys are adorable! I know today was a very long day for you, especially after last night's delay. I hope you came away with some good answers and are able to rest well this evening!
3boysmom Posted January 28, 2011 Report Posted January 28, 2011 Sorry I missed you too. Hope all went well for you all. It was nice to meet you Denise. Thanks for hangin' with my boys
browneyesmom Posted January 28, 2011 Author Report Posted January 28, 2011 I enjoyed meeting your boys, Linda! Great to meet you as well; praying you have a safe flight back.
NancyD Posted January 28, 2011 Report Posted January 28, 2011 So glad everything went well for your infusion, Denise, and that you got approval for more. I'm sure you are exhausted from such an eventful trip. You'll be glad to get home. it was great meeting your DD and husband! Our trip home was uneventful -- the roads were clear and DD slept for a while. I'm so glad we did the hit of prednisone. No headaches whatsoever. Linda, I hope your appointment with Dr. B went well. I'm sorry we didn't get to meet. Nancy
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