Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 Dear Dale: Tell Katy that we are proud of her new part and hope she get's the one with the Miracle worker. God Bless and take care, annette and alissa >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Wed, 19 Jan 2000 12:16:57 EST > >from Dale, Mom to Katy, 15, CVID > >Welcome , yes, it is very hard to watch our little ones suffer. But >better days will come. When Katy was first diagnosed we couldn't imagine >her >ever having a life. Now, we've figured out what works and what doesn't. >For >the most part, she's having a blast. Yes, she has a limited diet, yes, she >has IV's every 28 days, yes, she has more headaches, more fatigue, more >intestinal upsets, and a few more infections, but for the most she >complains >of typical teenage type things. And believe me, it sounds wonderful to >hear >her complain about normal stuff! > >Anyone else hearing murmurings of shortages. I just called to schedule >Katy's IV for Feb 3 and was told no IVIG is available at this time and that >all other patients are now 2 weeks behind. ARGH!!!! > >Autumn, we are praying for a breakthrough for both boys. I can't >comprehend >the pain they must both be in. Make time for sunshine and know that we're >all supporting you with prayers. > >Oh, Katy got a small part in Bye Bye Birdie -- Edna the mayor's wife. >She'll >also be a part of the adult chorus. She's looking forward to doing " What's >the Matter with Kids Today? " We didn't realize that Birdie would be >performing the same weekend as " The Miracle Worker " which Katy is also >doing, >so her small part was a reflection of conflict not talent (at least that >makes her feel better). > >Gotta get some sleep. Take care. Hope Alissa's tests go well today and >that >Zach is beginning to heal and that just continues to amaze you, >. > I'm reading all the news and praying -- just too busy to write. > >In His service, >dale ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Dear Dale: Sorry to have complained about such a stupid problem, but when they occur, it was overwhelming. That is great you have a date with your son, I hope you both have an enjoyable evening. Hope Katy is doing well and flourishing in the theatre. God Bless, annette and alissa >From: DaleMWeath@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Hi from Dale >Date: Tue, 1 Feb 2000 16:47:15 EST > >from Dale, Mom to Katy, 15, CVID > >Dear Annette, I'm really sorry to hear about your Dad's financial >problems. >Unfortunately, I know nothing about estates, etc. Just wanted you to know >I'm praying for you. Everything seems so much worse when our little ones >are >sick, but the truth of the matter is .... life goes on pretty much as >usual! > And there are other people for us to have to care for besides our >babies. > > (my 17 year old healthy son) and I have a date scheduled tonight. >I've got a long list of things we need to discuss, we just never have time >in >the course of a normal day. > >Hope today provides some answers for you. > >In His service, >Dale ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Annette - the problems that you are facing at the moment regarding your father are by no means stupid. They sound very real and very concerning. Please do not feel afraid to use us as a sounding board for every day issues. It's on of the main reasons I've recently added a Family Issues page to the PedPID site. There are other issues in life than this disease and these can be something that the list can also send support about. I'm actually glad you feel comfortable enough with the members to vent and share feelings. I have no experience in this area but you might also search the internet for Elderlaws. These deal with living wills, estates, trusts, all the issues that are faced by people in their " golden " years. Good luck and I wish I could be of more help. Ursula - & Macey (4 yr old w/CVID) mom Re: Hi from Dale Dear Dale: Sorry to have complained about such a stupid problem, but when they occur, it was overwhelming. That is great you have a date with your son, I hope you both have an enjoyable evening. Hope Katy is doing well and flourishing in the theatre. God Bless, annette and alissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 from Dale, Mom to Katy, CVID, age 15 Carol, I'm so sorry you had IV troubles today. Please tell your doctor that it is HIS/HER responsibility to tell the nurses that he is not a teaching subject -- not yours! The doctor should write it in his orders and they are required to follow it as written! We had to do that to get the nurses to run the IVIG at a slower infusion rate when we were using the " know-it-all " infusion center nurses who wanted to start Katy's IV at 120 and continue upping it even though she was in acute pain. We've had some really great nurses at other times, but just in case, you need doctor's orders to protect your kid. Hope it never, never, happens again. I'll be praying for you tonight that the fever is just a side effect and nothing serious. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Dale, thank you for you response and concern, josh was put on an antibiotic tonight do to fever and problem so hopefully this will not be a problem but a learning experience on my part. Today really showed me how easy someone else can cause your child to be in danger for his life. carol Hi from Dale From: dalemweath@... from Dale, Mom to Katy, CVID, age 15 Carol, I'm so sorry you had IV troubles today. Please tell your doctor that it is HIS/HER responsibility to tell the nurses that he is not a teaching subject -- not yours! The doctor should write it in his orders and they are required to follow it as written! We had to do that to get the nurses to run the IVIG at a slower infusion rate when we were using the " know-it-all " infusion center nurses who wanted to start Katy's IV at 120 and continue upping it even though she was in acute pain. We've had some really great nurses at other times, but just in case, you need doctor's orders to protect your kid. Hope it never, never, happens again. I'll be praying for you tonight that the fever is just a side effect and nothing serious. 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 and Dale: We start at 10 and max is 60, I gues it depends on age and child and how much IVIG they are recieving, annette > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: Hi from Dale >Date: Tue, 14 Mar 2000 08:16:23 -0500 > >HI Dale, >They start her at 120??????? gets started at 10 and works up to 45 >max!!! Weird!!??!! > > > Hi from Dale > > > >From: dalemweath@... > > > >from Dale, Mom to Katy, CVID, age 15 > > > >Carol, I'm so sorry you had IV troubles today. Please tell your doctor >that > >it is HIS/HER responsibility to tell the nurses that he is not a teaching > >subject -- not yours! The doctor should write it in his orders and >they > >are required to follow it as written! We had to do that to get the > >nurses to run the IVIG at a slower infusion rate when we were using the > > " know-it-all " infusion center nurses who wanted to start Katy's IV at 120 >and > >continue upping it even though she was in acute pain. We've had some >really > >great nurses at other times, but just in case, you need doctor's orders >to > >protect your kid. Hope it never, never, happens again. I'll be >praying > >for you tonight that the fever is just a side effect and nothing serious. > > > >In His service, > >Dale > > > >------------------------------------------------------------------------ > >GET A NEXTCARD VISA, in 30 seconds! Get rates > >as low as 0.0% Intro APR and no hidden fees. > >Apply NOW! > >http://click./1/975/5/_/480115/_/953008444/ > >------------------------------------------------------------------------ > > > >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. > > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 HI Dale, They start her at 120??????? gets started at 10 and works up to 45 max!!! Weird!!??!! Hi from Dale >From: dalemweath@... > >from Dale, Mom to Katy, CVID, age 15 > >Carol, I'm so sorry you had IV troubles today. Please tell your doctor that >it is HIS/HER responsibility to tell the nurses that he is not a teaching >subject -- not yours! The doctor should write it in his orders and they >are required to follow it as written! We had to do that to get the >nurses to run the IVIG at a slower infusion rate when we were using the > " know-it-all " infusion center nurses who wanted to start Katy's IV at 120 and >continue upping it even though she was in acute pain. We've had some really >great nurses at other times, but just in case, you need doctor's orders to >protect your kid. Hope it never, never, happens again. I'll be praying >for you tonight that the fever is just a side effect and nothing serious. > >In His service, >Dale > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates >as low as 0.0% Intro APR and no hidden fees. >Apply NOW! >http://click./1/975/5/_/480115/_/953008444/ >------------------------------------------------------------------------ > >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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 We start at 5 go to 10 after 15 minutes then start doubling every 15 minutes until we get to 80. We have gone as high as 120 before with no reactions but that was in the doctors office with him right down the hall. Ursula Holleman uahollem@... and Macey's mom (4 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...
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