melanie Posted November 6, 2011 Report Posted November 6, 2011 Going to do PEX tomorrow I will keep posting while we are in the hospital.I will keep everyone posted .Please keep danny in your prayers...5-7 days in the hospital .. Melanie
tpotter Posted November 6, 2011 Report Posted November 6, 2011 Going to do PEX tomorrow I will keep posting while we are in the hospital.I will keep everyone posted .Please keep danny in your prayers...5-7 days in the hospital .. Melanie I am SOOOO happy for you. Why so many days in the hospital?
peglem Posted November 6, 2011 Report Posted November 6, 2011 Prayers from here. Can't wait to see improvements!
melanie Posted November 6, 2011 Author Report Posted November 6, 2011 They are planning 5 exchanges I dont know every detail but I promise I will keep posting during the stay. Dann thinks hes going for contiuious IVIG for a week .Hope this helps more then the iVIG..Funny thing is he hasnt had any tics in 2 days.He seems to want to do this.I forget hes the one who really suffers..Love the boy so much. Melanie
saidie10 Posted November 7, 2011 Report Posted November 7, 2011 God luck and many prayers being sent your way! Tough young man you have there and a wonderful Mom!
dcmom Posted November 7, 2011 Report Posted November 7, 2011 Great news Melanie! I will be thinking of you and Danny!
Christianmom Posted November 7, 2011 Report Posted November 7, 2011 I will be praying for you too. So happy for you.
melanie Posted November 7, 2011 Author Report Posted November 7, 2011 Were in the hospital ivs hooked up. Were waiting for the cath to be placed in his neck. Ughh. He didn't know about that until a minute ago. Not sure if they are going to do the plasma until tomorrow because it's late? I'll keep posting. Melanie
melanie Posted November 7, 2011 Author Report Posted November 7, 2011 its in and hes not happy no pex tonite to late ughh its really bothering him does it stop hurting ughh melanie
saidie10 Posted November 8, 2011 Report Posted November 8, 2011 Sorry he is hurting ...this too shall pass and it will all be worth it!!! poor thing
melanie Posted November 8, 2011 Author Report Posted November 8, 2011 Still waiting for the PEX nurse. He slept a little but they keep waking him up for heparin shots. He seems much better today not complaining as much. I'll keep posting. Melanie
dcmom Posted November 8, 2011 Report Posted November 8, 2011 Is the catheter in his leg? We kept the blanket over it at all times, and distracted with movies, games, reading, etc. He should get used to it, and almost forget its there. The treatments are scary for them initially, because they are sensitive to the nurse hooking up to the catheter- but there is no pain. The machine is a bit noisy, so plan a movie or TV for during the treatment if you can. Make sure he is on hydration IV prior to or during the pex treatments, and increase calcium intake. Keep us posted!!!
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