Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 Thank you all for your thoughts and prayers. We are going to need them more now than ever. We went on to ER yesterday. She got some Rocephin injection and had to have a treatment there because of her asthma. We finally made it home. She had her infusion scheduled for today. Things could not go any worse before she started having a reaction. This is totally new for us. She became very tachycardic (140) and she broke out in hives all over. She could not even hold her head up because it was hurting so much. We finally had to stop the infusion. Granted this is our first infusion at home after having to go back to the hospital for the last 3 months. Well, then her port would not flush and they could not heparanize (sp??) it. They put in a call to the surgeon and he is putting her on the schedule to replace it ASAP. So now we are going off to surgery. I never wanted to lose this port. Now, my questions: Is this surgery the same as the last? They were saying something about the line possibly calcifying around the heart which had me scared to death. Again, thanks for all of your thoughts and prayers. Belinda Rose, Mom to Allyssa (11) and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG for 6 years, heart condition Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 Belinda - does the surgeon know that she's been febrile and tachycardic? That her asthma has been flaring up? A port surgery is so much more an invasive procedure than putting in a line. I hope that the current infection doesn't compromise her surgery. Possibly could you use a peripheral IV and infuse the IVIG, do a couple of days of Rocephin and then replace the port? Possibly this would allow for a few days of breathing treatment to up her respiratory status and make her a less anesthesia risk? Ursula Holleman mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 I'm so sorry! We're thinking of you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Belinda, I cannot even begin to imagine what you are experiencing right now. Please know that I have placed you and your beloved Cassie on our prayer chain in our local church. They have prayed me through many a crisis in my day. I kid often with these women that I think they have a direct line to heaven. Hang in there, you WILL get through this. Sharon (Hug) Re: Cassie This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 In a message dated 1/24/03 7:24:33 PM Central Standard Time, uahollem1@... writes: > You know it just always seems like nothing will ever go simply for these > You are so right. Just when things are going well, we get socked in the face with another episode of problems. I wanted to ask anyone who has gone through a mediport surgery more than once: What should I expect from this one? Is it going to just be a matter of taking this one out and putting in another/line and all? Or, do they have to switch sides/veins which they use? I just wanted to thank ALL of you who sent the well wishes and prayers. They are obviously working. Cassie rested very well last night. Boy, after Benadryl (doubled dose) and the Tylenol w/codeine/Motrin, and all the other meds, she pretty well was asleep before the nurse finally left. She is doing better today. The surgery is tentatively scheduled for next Friday. Ursula, thanks for letting me know about what to ask the surgeon. I did ask the person who schedules the surgery. She asked the surgeon and he said if she is fever free for at least 5 days, they probably will go ahead with surgery. I have to call him on Monday to let him know. Also, the cardiologist is going to take a peek at her next week just to " make sure. " But, they did tell me to be prepared for a postponement if need be. I was okay with that. So, she can't go to school next week just to make sure she is not exposed to any infections that we can possibly avoid. RSV/flu have really hit hard here in south Texas. Rotovirus is another one that is getting the kids really sick. Looks like a tough winter in Texas this year. God bless all of you and hope that you have a safe/healthy weekend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 In a message dated 1/24/03 6:23:55 PM Pacific Standard Time, rrdgtchr@... writes: > Also, the cardiologist is > going to take a peek at her next week just to " make sure. " I'm still praying, but I feel so much better knowing this! I'm glad Cassie is improving. How are you holding up?? Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Sandi, Hello!!! I am feeling much better now. Thanks for asking. I know everyone on this list understands when we are faced with a crisis (minor/major) we can just get on the computer and ask away. Someone out there has dealt with it before and can offer tons of great advice. We are just such an extraordinary bunch of families who really care about one another. It is just so nice to know that you all are just a typed message away for support and prayers. Belinda Rose, Mom to Cassie, igg immunodeficient, asthma, sinusitis, IVIG for 6 years, heart condition Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 In a message dated 1/24/03 9:14:26 PM Central Standard Time, uahollem1@... writes: > geez doesn't it seem like I've had enough of those these days!. Ursula, Keep them coming. You are so smart. I have stopped the tylenol/motrin thing today. She had her last dose about noon. I am not giving her anymore because I don't want to be masking any potential fever that would signify something going on. But, no one mentioned this to me today and I spoke to ped/surgeon/immunologist/cardiologist. None of them even asked to what medications she had taken today. They knew it yesterday because they all were the ones telling me to give her all of them. Kind of scary though. Keep the warm thoughts. It is a chilly 39 and rain in Corpus. We are usually in the 50's this time of year. It is a gloomy one today. The type of weather where you don't want to leave home but stay by the heater with a good book. Good Luck, Belinda Rose, A much more relaxed mom today : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Belinda: I'm late with my prayers but glad Cassie seems to be doing a little better. You're in my thoughts tonight! (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Belinda, We're with you in spirit Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Belinda! My 3yo Rebekah prayed for Cassie last night. I think, in a limited way, she could understand how awful another kid with PID can feel. I'm praying for Cassie, too! Pam wife to (16 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Rebekah has CVID and maybe some other stuff Re: Cassie Thank you all for your thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Belinda! My 3yo Rebekah prayed for Cassie last night. I think, in a limited way, she could understand how awful another kid with PID can feel. I'm praying for Cassie, too! Pam wife to (16 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Rebekah has CVID and maybe some other stuff Re: Cassie Thank you all for your thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Belinda - I'm so glad to hear that she is resting more comfortably. I'm also glad to hear you seem to have some very competent doctors dealing with her. Her best interest seems to be first on their minds. Good luck with the fever. One more thought, geez doesn't it seem like I've had enough of those these days!. Remember that Advil/Motrin promotes bleeding (as well as aspirin products). These drugs stay in the system for a while and we've always been counseled by surgeons to steer clear of them before surgery. Her surgeon in Atlanta wants us to just give Tylenol for up to two weeks before surgery, but the local surgeons (which we've never seen but I've dealt with at work) say stop Advil/Motrin about a week out. Here's to a calmer weekend and many warmer temperatures around the country (it was a brisk 13 here in the heart of the South this morning). Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 I am not sure when he will start the therapy but it has to wait until the insurance decides to approve it or not. If the ins. don't approve it then we won't be doing it since I don't have that kind of money. Cassie osdbmom wrote: > Hey Cassie, glad you decided to come over!!Now we can all go thru this > together........you and meg and me. > When will start his IVIG? > We see pulmo on feb 9th, and I am hoping to get def. answers about > IVIG for any of the kids......I think Brennan is the first in line, > given the yr he has had, but now with savannah in the > mix.....yikes!!we always thought it was just the boys!! > Valarie > > > > > > > This forum is open to parents and caregivers of children diagnosed > with a Primary Immune Deficiency. Opinions or medical advice stated > here are the sole responsibility of the poster and should not be taken > as professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Cassie wrote: > Well we are finally back Yeah for uneventful first IVIG! And really, each time gets easier. You'll learn what to pack and what to leave home. The first time I must have lugged 45 pounds of luggage in to try to " keep her happy " . But I didn't pack lunch. Next time, I packed lunch and just a few art projects! (And she was 13 at the time!!!!) After 3 times, though, we transitioned to home health care - which was WONDERFUL! I'm glad your day was problem free -- sorry it took so long, but it will get a little fast each time until you reach a comfortable place. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 All we actually took with us were his school books, a game, a movie and a drink and the other movies were provided by the clinic. The good thing that happened of all this today is the fact that he got a brand new pair of shoes from the doctor. Cassie Dale Weatherford wrote: > Cassie wrote: > > Well we are finally back > > > Yeah for uneventful first IVIG! And really, each time gets easier. > You'll learn what to pack and what to leave home. The first time I must > have lugged 45 pounds of luggage in to try to " keep her happy " . But I > didn't pack lunch. Next time, I packed lunch and just a few art > projects! (And she was 13 at the time!!!!) After 3 times, though, we > transitioned to home health care - which was WONDERFUL! > > I'm glad your day was problem free -- sorry it took so long, but it will > get a little fast each time until you reach a comfortable place. > > In His service, > Dale > > > This forum is open to parents and caregivers of children diagnosed > with a Primary Immune Deficiency. Opinions or medical advice stated > here are the sole responsibility of the poster and should not be taken > as professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Dear Friends, I need to find store who sell cassie , Thanks , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 > Dear Friends, > I need to find store who sell cassie , > > Thanks , > > > I believe EDEN BOTONICALS carries absolute but you > did not say what form you wanted. > Bb > Also, White Lotus has a lovely cassie absolute. Andrine Quote Link to comment Share on other sites More sharing options...
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