Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Sam's nurse said to expect a call within the next couple of days to set up our first SubQ, probably for next Wednesday. I don't know whether to be nervous or just excited! Hope everyone is having a safe and happy holiday season! God bless, Wenoka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Wenoka, Good Luck! I hope it works for him. Make sure he has fatty tissue. In s case he had two very painful sub q treatments before we were told he was not a canidate for sub q because he has no body fat. was glad he tried but knows now it is not for him. Let us know how it goes, danielle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 It was tough saying goodbye yesterday to the wonderful day med people at AR Children's Hospital though. Wenoka, I understand completely! It was real hard to say good bye to Stanford as we had been going there every three weeks for 7 years. Everyone knows there. It was our home away from home! We still go there twice a year and say hi as 's Immune Doc is there. was the one that wanted to try our local infusion center once he started high school. I did not want to switch but knew it was time. did not want to miss a full day of school. I must say it has worked out well.......then sub q came along and we were really excited about the possibilities of doing it at night or on the weekends. But found very quickly sub Q was not for him. We are back at the infusion center at our local hospital and doing just fine. I must say that the company we worked with for Sub Q was always accessible and great to work with..........although the nurse who came to teach us made the innocent mistake of talking to a high school freshman as if he was 8. That quickly changed as politely asked her to stop talking to him as if he was a little kid. She was very good with him. I just wish they would have expressed their concern in the beginning. She did report to the doctor that she felt would not be a good candidate, but didn't tell us. She and the doctor (not our immune doc) decided to give it one more try, so the next week we tried again and it was a disaster! After the sub q was in a half hour was yelling at us, take it out , it was extremely painful. The lines were taken out then we were told about the body fat. I was upset in the beginning that they did not talk to us about that when they were training us.............but am glad we went Thur it because now knows without a doubt that Sub Q is not for him. I don't mean to scare anyone away from sub q. I hear it is working wonders. Thats why we were so excited. But in our case it did not work. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 It was tough saying goodbye yesterday to the wonderful day med people at AR Children's Hospital though. Wenoka, I understand completely! It was real hard to say good bye to Stanford as we had been going there every three weeks for 7 years. Everyone knows there. It was our home away from home! We still go there twice a year and say hi as 's Immune Doc is there. was the one that wanted to try our local infusion center once he started high school. I did not want to switch but knew it was time. did not want to miss a full day of school. I must say it has worked out well.......then sub q came along and we were really excited about the possibilities of doing it at night or on the weekends. But found very quickly sub Q was not for him. We are back at the infusion center at our local hospital and doing just fine. I must say that the company we worked with for Sub Q was always accessible and great to work with..........although the nurse who came to teach us made the innocent mistake of talking to a high school freshman as if he was 8. That quickly changed as politely asked her to stop talking to him as if he was a little kid. She was very good with him. I just wish they would have expressed their concern in the beginning. She did report to the doctor that she felt would not be a good candidate, but didn't tell us. She and the doctor (not our immune doc) decided to give it one more try, so the next week we tried again and it was a disaster! After the sub q was in a half hour was yelling at us, take it out , it was extremely painful. The lines were taken out then we were told about the body fat. I was upset in the beginning that they did not talk to us about that when they were training us.............but am glad we went Thur it because now knows without a doubt that Sub Q is not for him. I don't mean to scare anyone away from sub q. I hear it is working wonders. Thats why we were so excited. But in our case it did not work. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 I would just remind your son that there may be some " adjustments " that need to be made if he's not happy with the way things are going with subq. My son has only been on it for a couple of months and he has had some problems with pain/burning at the sites. With a little experimenting we have found some things that make it much more comfortable, such as slowing down the rate in the first several minutes of the infusion and increasing the dilution (adding an extra 5ccs of sterile water to the Carimune really cuts down the irritation for him). We still use Elamax on the sites before we do the sticks. We were also told that we can apply an ice pack to the sites during the infusion, if needed. One other thing that you might consider is a way to make the pump easily portable (do you know which pump you'll be using?). Our infusion company wanted to use an IV pole, however we wanted it to be more portable than that. We originally put his pump in a fanny pack, but eventually changed to a small backpack, this allows him the freedom that he desired. Best of luck with the transition, if you have any questions I'm sure there are lots of people to help here, we couldn't have made it this far without the knowledge here! Let us know how it goes! Take care, Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and immunodeficiency-CVID), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, mild hearing loss/unaided), and Kelsey - surviving triplet (8, hearing - but not listening!) Quote Link to comment Share on other sites More sharing options...
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