Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Ursula, Boy, you are good at keeping up with everyone. Hope you had a wonderful Mother's Day. Cassie's port has been hurting her on and off for a while now. I spoke to the surgeon a couple of weeks ago, and he said we would wait and see. She has not been complaining as much anymore. I think it was all muscular/skeletal. Could not explain the bump though. We went in for the flush and everything went in okay. Oh, and while we were there, Cassie's wonderful nurse gave us a new bandage to use instead of the tape for the EMLA. It is what they use on the burn patients. We would put the EMLA and then a piece of saran wrap then a gauze pad. Then we slip this bandage thing on like a halter top. The great thing is that it is also washable. Imagine that. This whole time, Cassie would freak when it was time to pull the tape. We will officially try this thing in about 3 weeks. I am sorry to hear that Macey is having trouble with so much pain. That is no fun. We are keeping you in our prayers for all to turn out well. Keep us posted on her tests. Take Care, Belinda Rose, Mom to Cassie, testing phase, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Ursula, Cassie is now 5 1/2. She was born 10/5/94. I never really thought about the growth spurt. But, you could be right because she did grow 1 " this last visit. Good idea. The bandage that we got was just given to us without the box, so I don't even know the name. I am so bad. But, it is like a four inch tube top. It just slides right over her head, though we had better luck bringing it up from the legs than going over the shoulder. It does fit really snug. The nurse must have just cut off a piece and gave it to us. I am sure it comes in a huge roll. I will ask the next time I am in for the flush. Belinda Rose, Mom to Cassie, my little goose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Belinda - I forget, how old is Cassie? Could she be going through a growth spell? That might cause the irritation/pain/hurt. Is the bandage thing like vest? I have heard of something similar that they use with central line patients to hold their catheter against the chest so their clothes fit better and had thought it would be a really good thing to have when a chest port is accessed. I had made a mental note to check on it if Macey gets another port in the fall. Is there a tag on it that might tell who manufactures it? or a box it came in maybe? I'm sure our hemoc coordinator at the hospital knows but we don't see that department so she wouldn't know me from a turtle. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com http://www.onelist.com/community/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 similar to a netting type cloth? Now I know what your talking about. Our PICU used it. We used it once when Macey had a PICC line in her upper arm. Good stuff. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com http://www.onelist.com/community/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 -Belinda, I hope you don't mind my replying to your note. I just thought I would share with you what Hannah's nurse does for the tape issue. We have a home care nurse that comes in our home for IVIG and she is wonderful. Hannah refused to use EMLA at first because she hated the tape coming off more than the IV stick. The nurse showed her a trick though. Hannah starts pealing up the tape while the nurse rubs an alcohol swab under it as she goes. The tape doesn't hurt at all that way and Hannah has complete control for how fast/slow the tape comes off. This works for the IV tape also. When she has to go into the hospital for a treatment, the nurses aren't so sensitive to these tape issues. Hannah now has control over the tape and she also irrigates/flushes and does alot of the work WITH the nurse. Our nurse only stays at our house for the first 45 minutes then we monitor Hannah ourselves and the nurse leaves. We take the IV out when she is done. We found (docs, nurse, counselor) that this is the best way for Hannah to deal with this. Take care, , Mom to Hannah CVID, -- In PedPIDegroups, rrdgtchr@a... wrote: > Ursula, > > Boy, you are good at keeping up with everyone. Hope you had a wonderful > Mother's Day. Cassie's port has been hurting her on and off for a while now. > I spoke to the surgeon a couple of weeks ago, and he said we would wait and > see. She has not been complaining as much anymore. I think it was all > muscular/skeletal. Could not explain the bump though. We went in for the > flush and everything went in okay. Oh, and while we were there, Cassie's > wonderful nurse gave us a new bandage to use instead of the tape for the > EMLA. It is what they use on the burn patients. We would put the EMLA and > then a piece of saran wrap then a gauze pad. Then we slip this bandage thing > on like a halter top. The great thing is that it is also washable. Imagine > that. This whole time, Cassie would freak when it was time to pull the tape. > We will officially try this thing in about 3 weeks. > > I am sorry to hear that Macey is having trouble with so much pain. That is > no fun. We are keeping you in our prayers for all to turn out well. Keep us > posted on her tests. > > Take Care, > Belinda Rose, > Mom to Cassie, testing phase, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Thanks, Ursula. My Mom is still in the hospital, and the infection has spread and now covers her entire upper leg! They did a biopsy last night and today she goes for an MRI. They think it may be a fungus or bacteria she picked up while in Arizona last March. Ironically, one of her doctors is Kody's infectious disease doctor! I took Kody to the doctor yesterday, and he has a respiratory virus, however, his left lung has low air capacity and sounds crackly, the concern is that it is turning into viral pneumonia. It he isn't better by today or tomorrow, he will have to go to the hospital for treatment. In the meantime I am to continue with all his meds and give him nebulizer treatments every 4 hours. He sounds awful but still wants to play so I find that encouraging. I am not sure if his CD4/CD8 numbers are tweaked....no one said...I pulled up the lab report and find it interesting that actually he is low in several things. I also have a question...if the blood tests were done when he had a major infection, wouldn't his CD4/CD8 count be higher than normal? So, the fact that these tests results are low at this time, doesn't it mean that when Kody doesn't have an infection these numbers are even lower? These numbers were taken when he had his osteomyelitis. Anyway, Here's his numbers: white cell count 5.4 (normal 6.8-10), B lymphs 42.3 (normal 38-53) hematology diff 2280 (normal 2900-5100), CD19 total B lymph 500 (normal 700-1390), CD3 mature T cells 1590 (normal 1800-3000), CD4 990 (normal 1000-1800), CD8 560 (normal 800-1500), helper/supresser ratio 1.76 (normal 1-1.6) CD56/CD3 natural killer lymphs 180 (normal 200-600). The numbers aren't off by much, and some are only slightly higher than the " normal " . Should these be retaken when he is clear of infection? How on earth do you understand all this stuff without getting a headache??? ) Diane, Mom to Kody A.K.A. Batman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 Ursula, Glad to hear about all of Macey's excellent numbers on her labs. I hope the post labs come out just as promising. Sorry that it took so many attempts to find the vein and she ended lunch on such a bad " nugget. " Hopefully, and your husband find the relief they need and continue to improve. Lots of us know how bad it is to suffer with the effects of allergies. Do you know how long it takes to find out the results of the lab work. It took about a week. A lab called Quest Nichols in California performed the test. It was not a long wait at all. The wait came when the hospital got the results and then mailed them to the doctor. But, maybe yours will not be done like that. Keep us posted. And enjoy the rest of your summer. Belinda Rose, Mom to Allyssa and Cassie, igg immunodefficient, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 Ursula: I am so happy to hear about Macey's bloodwork! I can't believe what that poor little angel goes through to have some blood drawn! Does this happen every month? So glad to hear that her chest and ears are clearing! Glad also to hear that and Les will be finding some relief for their allergies as well. I am so happy that you are heading off to the beach for a well deserved break. What beach do you go to? Since you updated us on your family, I was wondering how are YOU doing, and how are you feeling these days? Tina (Mike, 14, CVID, JRA, ASTHMA) Quote Link to comment Share on other sites More sharing options...
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