Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 bands per Mosby's Diagnostic and lab test reference, Are early immature forms of neutrophils in the blood circulation. They cause what is called a " shift to the left " in white blood cell production, are are indicative of an ongoing acute bacterial infection. What was her white count? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh 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 November 22, 2002 Report Share Posted November 22, 2002 26.2! Thursday was pokey day. The nurse had LOTS of trouble getting blood and had to put the needle into the port twice. Rebekah has developed bronchitis (at least) and her port may be infected now. When we pulled the first fluid out of the port, it was brown. I've never seen that before. It's always been clear and we've gone longer between accessing the port before. I'm definitely having one of those days where I feel numb and overwhelmed. I don't know what to do. Take her into the clinic? Wait for the culture on the port? Pray? Definitely on that last one. It's going to be a long day. Pam wife to (15 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Re: We made 19 days bands per Mosby's Diagnostic and lab test reference, Are early immature forms of neutrophils in the blood circulation. They cause what is called a " shift to the left " in white blood cell production, are are indicative of an ongoing acute bacterial infection. What was her white count? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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 November 23, 2002 Report Share Posted November 23, 2002 Pam, How is Rebekah doing today? Poor little thing. Did you take her back to the doctor to see about the port being infected? What ended up showing up? I know that when they first access Cassie, the blood is usually reddish/brown. But, it is more red than brown. Allyssa (non-PID) is battling bronchitis right now. I just have to keep Allyssa and Cassie separated as much as possible. But, Cassie right now (knock on wood) is not showing any signs of being ill. We have had too much on our plate in the last few weeks to start back up again. We will keep Rebekah in our prayers. Keep us updated on how she is feeling. Belinda Rose, Mom to Allyssa and Cassie, 8 y/o, igg immunodeficient, asthma, sinusitis, IVIG for 6 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Kody's fluid that comes out of his port at first is brown too. I think with him it is just old blood sitting there. Never thought of it being anything else. Kody also had to be poked twice yesterday for his IVIG, but I don't think it is the ports fault but rather the nurse didn't get it in right. Grrrr..... Diane, Mom to Kody Come visit my website!Sign my guestbook www.geocities.com/schmidtzoo/SNAK.index.html -- Re: We made 19 days bands per Mosby's Diagnostic and lab test reference, Are early immature forms of neutrophils in the blood circulation. They cause what is called a " shift to the left " in white blood cell production, are are indicative of an ongoing acute bacterial infection. What was her white count? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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 November 23, 2002 Report Share Posted November 23, 2002 Kody's fluid that comes out of his port at first is brown too. I think with him it is just old blood sitting there. Never thought of it being anything else. Kody also had to be poked twice yesterday for his IVIG, but I don't think it is the ports fault but rather the nurse didn't get it in right. Grrrr..... Diane, Mom to Kody Come visit my website!Sign my guestbook www.geocities.com/schmidtzoo/SNAK.index.html -- Re: We made 19 days bands per Mosby's Diagnostic and lab test reference, Are early immature forms of neutrophils in the blood circulation. They cause what is called a " shift to the left " in white blood cell production, are are indicative of an ongoing acute bacterial infection. What was her white count? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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 November 24, 2002 Report Share Posted November 24, 2002 Pam, I'm sorry you had such a horrible week!! It is wonderful that Rebekah didn't have a migraine after this infusion. *\O/* Was anything done differently with hopes of avoiding her usual headaches? The comments you are hearing from people regarding Rebekah's PI are just one more indication of how little the general public (and many medical professionals) know/understand about this disease which can raise havoc in so many lives. That's why those of us who understand need to stick together and learn as much as we can. Hang in there! Kathy, mom to Isaac, 11, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 Oh, that helps to hear that someone else has port fluid that is brown. The four previous times we access the port, the fluid was clear. The brown color shocked everyone in the room! Pam wife to (15 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Re: We made 19 days bands per Mosby's Diagnostic and lab test reference, Are early immature forms of neutrophils in the blood circulation. They cause what is called a " shift to the left " in white blood cell production, are are indicative of an ongoing acute bacterial infection. What was her white count? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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 November 24, 2002 Report Share Posted November 24, 2002 I'm kind of shocked to say this, but Rebekah looks good. Okay, deathly pale, but she feels good! It was rather fun to go to church today and not be constantly checking her temp or trying to help her get comfortable enough to rest on a pew! The port fluid was BROWN, not reddish-brown. The 24 hour culture was negative. At this point, since she looks and feels so good, I'm guessing that the port wasn't infected. The nurse wants to come flush the port out in between our every-third-week treatments. I'm not very excited about doing that. I think we is just hyper since the blame for a contaminated port would fall on her. Remember that she was the one who forgot to flush the port and had to come back later and do it! Thanks for your prayers. This week was a real strain. On Monday, I caught the doctor in a major med mistake, on Tuesday Rebekah got sick and the walk-in clinic doesn't have her chart so I had to order all of the tests myself (at least they let me!), on Wednesday we were back for more blood work, on Thursday she got five pokes for her treatment and blood work, we thought her port was infected and she had developed bronchitis, and on Friday, her bronchitis was worse. I will say that on Saturday things started looking up, but I was whipped. What a roller coaster ride this whole disease has been! Unfortunately, the sympathy at work is running out. I'm now getting comments like, " Every three week treatments aren't so bad " and " My wife's immune suppressed and it's not a big deal. " And, on a sadder note, my husband has been asked to step down as chair of his department because of the time he's missed from work for Rebekah. That last bit happened on the same day that Rebekah became sick and I spent the night at the clinic ordering tests. Bad timing! Hope some of the rest of you can report improved health. As Thanksgiving approaches, I was thinking how glad I am that I have a diagnosis now. Last Thanksgiving, Rebekah was profoundly ill and we had no diagnosis and were still fighting to get the doctors to see that there was a problem. This Thanksgiving, I am thankful that we had a disease and a treatment and more understanding of why she is the way she is. I'm also thankful for health in general. On day last weekend, I only gave one med to any of my kids at bedtime. It was a special moment in our lives <grin>. Pam wife to (15 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Re: We made 19 days Pam, How is Rebekah doing today? Poor little thing. Did you take her back to the doctor to see about the port being infected? What ended up showing up? I know that when they first access Cassie, the blood is usually reddish/brown. But, it is more red than brown. Allyssa (non-PID) is battling bronchitis right now. I just have to keep Allyssa and Cassie separated as much as possible. But, Cassie right now (knock on wood) is not showing any signs of being ill. We have had too much on our plate in the last few weeks to start back up again. We will keep Rebekah in our prayers. Keep us updated on how she is feeling. Belinda Rose, Mom to Allyssa and Cassie, 8 y/o, igg immunodeficient, asthma, sinusitis, IVIG for 6 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 No, that's what's so frustrating! We have no idea what caused her NOT to have a migraine. Maybe she is just (finally) adjusting to gammaguard! Maybe it will be better from now on. We see the doctor in Minneapolis this week (on Tuesday). By then, we should have all of Rebekah's test results and he will be able to tell us if her bronchitis is getting better or worse. Hope your search for a new nurse is going better. Our college is raising its insurance premiums drastically come January and Medica has been advertising heavily in this area about how much cheaper they are. I am just filing away your suggestions on how to handle insurance company changes. I suspect that we will be going through an insurance change by next January! Pam wife to (15 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Re: We made 19 days It is wonderful that Rebekah didn't have a migraine after this infusion. *\O/* Was anything done differently with hopes of avoiding her usual headaches? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 Kody's nurse didn't seem bothered by it at all. So I figured must be normal. Kody gets his IVIG at the hospital, and usually on the children's cancer floor because the nurses there are used to using the ports. I do have a question I need to ask Kody's ped though regarding his port. Do kids out grow the port eventually? I mean Kody has grown a ton since his was put in 2 years ago. Back then he weighed 32 pounds and now he weighs 55 pounds!!! He also has grown very tall. Back then he wore a size 2T and now he wears a 7 regular!!! Diane, Mom to Kody Come visit my website!Sign my guestbook www.geocities.com/schmidtzoo/SNAK.index.html -- Re: We made 19 days bands per Mosby's Diagnostic and lab test reference, Are early immature forms of neutrophils in the blood circulation. They cause what is called a " shift to the left " in white blood cell production, are are indicative of an ongoing acute bacterial infection. What was her white count? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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...
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