Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 , things really are moving along. Waiting for the hem's nurse to authorize-- she called them 3 or 4 times today and was put on hold for too long--she had to get back to patients. She called to leave a message letting me know that she will try again tomorrow. NuFactor has been in contact with her/the hem-- they left messages. Glad to hear the infusion went well tonight. WOO HOO! ph isn;t warming up to the idea of having pokies in his tummy or ANY place other than his arm or hand. those of you who have switched to subQ-- how did your kids do during transition? Anyone with kids that have OCD tendencies try this? It'll take me forever and a HUGE bribe to get him to go for it. is already sold on the idea-- all I had to tell him was that we'd be at home and he'd likely have less headaches and vomiting! ph doesn;t care about ANY of that-- he cares about routine. I have to talk to him about it to get him used to the idea otherwise it will be a nightmare to switch. Tonight he asked, " Why can't the doctor come here and do it? I really only want you to poke me in my hand or arm. " He feels less awful than post-infusion, but still has enough pain to require Motrin. Dale, thank you so much for sharing with me. It is so important as we go through these things to hear others experiences! ph is the one who is experiencing repeat infections and landed in the hospital last summer...so I really think the constant levels with SubQ will help him. I feel bad because he has a hard time adjusting...but I have to keep telling myself that ultimately he will adjust and this is to make his life better. He's such a cuddly little bear! It breaks my heart that he is worried about it..BUT not overly--don;t want you to think he's thinking about it day and night. We talk about it and then he needs a reassuring hug :0) I have to mention it to him so that he gets used to the idea-- his OCD tendencies ..... gosh -- I have to warm him to the idea before he will ever be able to change over. The first day wil be really hard on him.... pray for us! Pray for him...... I hope everyone is having a good night! +JMJ+ Peace Be With You, ><>Pattie Piedmont Triad, NC Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and ph age 8, Shwachman-Diamond Syndrome. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.