Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Meg, Evan has a small incision, it's about 2 inches long. Part of the problem hasn't only been the incision, it's been abdominal pain, in general. It turns out that the pathology report showed he did not have an appendicitis, it showed lymphoid hyperplasia (which doesn't tell us much), but it turns out that the appendectomy wasn't necessary! So basically they have no idea why he was in so much pain. They assumed appendix when he tested negative for pancreatitis (we made them check for that since Conner had it last year). I'm praying it doesn't turn out to be anything else! I spoke to the surgeon today and he said that he sure hoped we weren't missing anything, between the sudden pneumonia and abdominal pain. I wasn't thrilled with that thought! Anyway, thanks for thinking of us! Take care, Mom to Conner (12, unknown combined immune deficiency, lymphadenopathy, asthma, Hashimoto's disease and resolved adrenal insufficiency), Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided), Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided), and Kelsey - (10, unknown immune deficiency and asthma) Please visit us at www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi, . I think that Ursula was responding to Ladden's message. Perhaps we should all refer to her as L and you as S? L. has an upcoming appt., to discuss possibilities, and I think Ursula was referring to that. <<BIG SMILE>>. I am thinking of you and am there in spirit my dear. I am so bummed to hear that has been dealing with these bugs. My hope is that he is not as bad as last year, though. I can definitely related to the low WBC/neutropenia with Dani...sometimes, I feel like I am walking on landmines. Praying for better health with every passing day. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 , I'm better....SHITTY w/e....Think we made major headway between us... Work still sucks..but can't afford to not have this insurance....so will need to stick it out. seems better...no more mouth sores. will wait til my ped gets back to discuss when coming to the cities.. We are doing a ND family meeting in Fargo for the IDF on 10/21...if you are interested. Details to follow...as I get them. Quoting sarah larson <mom2gwynn@...>: > > > - > > Are you there? > > I wanted to check in and see how everything is...sorry > to hear is not feeling well. Am a little > worried about you....let me know. > > ~~ > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 - I am sorry work sucks right now....I sure think that parents of chronically ill children get the shaft with the whole employment thing. I lost my job last year when my FMLA ran out and Gwynn was in the hospital again. I really think it bites. Hope it gets better for you. I am really glad to hear that is better. Gwynn is so so. Let me know when you guys are coming this way and I will look into October! I wonder when the IDF will do a family day in MN? ~~ --- lmschatz@... wrote: > , > > I'm better....SHITTY w/e....Think we made major > headway between us... > > Work still sucks..but can't afford to not have this > insurance....so will need > to stick it out. > > seems better...no more mouth sores. will wait > til my ped gets back to > discuss when coming to the cities.. > > We are doing a ND family meeting in Fargo for the > IDF on 10/21...if you are > interested. Details to follow...as I get them. > > > Quoting sarah larson <mom2gwynn@...>: > > > > > > > - > > > > Are you there? > > > > I wanted to check in and see how everything > is...sorry > > to hear is not feeling well. Am a little > > worried about you....let me know. > > > > ~~ > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Yes, Like labor or having a big bowel movement is what causes a vasal-vegal response. Cardiac pts can arrest if they bear down after a heart attack...that is why we put them all on stool softeners...It actually did happen to me one time with a pt... So, If you had a seizure...I don't think this is what it was...No real other idea......Is there a history of seizures? Do you have migraines? What type of movements did they describe to say it was a seizure. I would think that you should see a neurologist and possibly have an EKG or 24 hour holter (heart monitor)......to see your heart rhythm over a period of time. I agree that it happened at a good place, just so sorry that it happened. Home 7016638959, cell 7012204034 if you want to talk. S. What the heck? Bearing down, like labor? How would that happen if Im just sitting there, shooting the breeze with my dr friend? Im not quite thinking this fits either. thanks, valarie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 I dont know. I feel like Im just getting the easy answer, but personally, with all the driving I do, I am feeling concerned this could have happened with my kids in the car, and feel almost sick to think of this. I know one thing, I am teaching them all how to operate the cell phone. , Please, for you and your kids sake please follow up with an neurologist Like you said you were not nervous at the time!! This didn't just happen for no reason. Keep us posted. Janet mom to Brittany age 15, CVID and auto-immune's ?? yet to be determined Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Maybe you need to ask for a glucose tolerance test and see if that isn't the problem. I would agree to teach the kids how to use the cell phone and how to get help if out on the highway, of course if they know to dial 911 with it then that would get the needed help. Cassie osdbmom <osdbmom@...> wrote: I so appreciate all this info. This is such a great board for everything!! I have always had migraines. Started when I was 12, and the first time, I did fall and shake. Since my older sister has epilepsy, this is what they immediately thought. My first EEG showed I did. they repeated it for whatever reason, said I didnt, and took me off the meds. I continuedd to have migraines all thru my teens and complete with the " aura " , sometimes trapped in a dark room for days. They stopped, and came back when I was in a car wreck at 22 and whacked my head, got a concussion. This lasted about 2 yrs. Now they are off and on. Both my sister and I have a mitral valve prolapse. I also have asthma. However, I did not feel short of breath, my chest didnt hurt, I mean, I was seriously just sitting there talking. really. just.....normal. they did an ekg, head ct, 15 minute eeg with the blinky lights. Everything came back ok. the only things that were questionable were that since I was in a drs office, they did not have a glucometer at the ready, so the crash team gave me a large amount of dextrose, and then, a few minutes later when they got a glucometer, took my sugar, which was 95. One nurse mentioned that usually, with a regular BS, the amount of dextrose they gave me would have jumped my BS much higher than 95, so it must have been low to begin with. They did take my BP as this all started, and it was like, 160 over 100-----and I usually run about 90/60, somewhere around there. The first time they ran my calcium it came up low, the second time it looked ok. I did see a neuro who is supposed to be the go-to guy around here. He is still convinced this is the vv thing. He is positive, though I keep telling him this isnt so, that I was just terrified in the hospital and held my breath. He thinks I was afraid of the dr, nervous in the hospital, etc, happens all the time, hes seen it before with people visiting relatives and all and they get nervous. BUT, Im not nervous in a hospital. With 4 kids with chronic medical conditions, we are there all the time. Its like second home. We have great drs, our pulmo, who we were seeing at that time, is just my friend. Our nurses there and the dr and I are all on first name basis. We're all buddies. Known each other 5 yrs. This was not a frightening appt, just a regular followup--not anything to be nervous about. My daughter saw me, and said I turned white, then red, then white again and my eyes were gone(rolled up). Evidently I shook, and was unresponsive off and on for 2 hrs. They also said I had multiple " focal seizures " where my eyes were open, but fully dilated and I was unresponsive. I do not remember most of this time, just very spotty of people smacking me and calling my name. I was hypoglycemic as a child, but havent had a problem with that in many yrs. I dont know. I feel like Im just getting the easy answer, but personally, with all the driving I do, I am feeling concerned this could have happened with my kids in the car, and feel almost sick to think of this. I know one thing, I am teaching them all how to operate the cell phone. Dont get me wrong=-----I DO NOT WANT TO HAVE A SEIZURE DISORDER!!NONONO!! Ive watched my sister, two nephews, my niece all struggle with this. Its terrible. I CANNOT be put on driving restriction........I have no one to help me with all these appts and things I need to do with the kids, drs appts, infusions, tests, etc. I just want to know what happened, so I know my kids and I are safe:) It was a scary experience, and I NEVER want to repeat that. Its horrid to feel that out of control. valarie www.marykay.com/cassieredinger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 We've used the new Synera patches. I really like them because they work faster than Emla- about 20 minutes. DD is not sure about them-hates to change the routine! I will say they do warm up quickly and cause the skin to be redder than Emla. They are much neater too- no messy cream to wipe up and they pull off easier than the Tegaderm we use with the Emla cream. They are certainly worth a try. Have you tried the Sof Set infusion sets? DD will only use these as the needles get removed leaving a catheter in place. We infuse into 2 sites and use the Norfolk y-extension set with the Sof Sets. Sara S. We're rotating sites. Added the triceps and part of the thigh. We're still using the Norfolk Medical sets (looks like discs and you have to make a " sting ray " to place them well). Lately, I've found that they are duller and I've contacted the manufacturer. We still use EMLA for 45+ minutes but I've heard that there is a new patch with a heating element. If you know about this, can you tell me your experience? Good luck with the mold/spores. Scary stuff. I've yet to find a R95 mask that can fit a child. It's criminal. Be well, Dani's mom CIVD Quote Link to comment Share on other sites More sharing options...
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