Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Chrystal, I hope she feels better soon - it's no fun to have an owie every time you pee pee. Give her a big hug from all of us. Hope to see you at the conference... > > Thank you everyone for just being so wonderful. I completed that survey, > and > it astonished me that yes I have become more comfortable with Charge since > > finding a " home " here. Chrystine is very lethargic still and I requested > tylenol for her every 4-6 hrs. I noticed when she pee peed, she was crying > so hard. > If any of you have had a kidney/uti infection, then you know, it really > hurts. Chrystine has cystic dysplasia. Her nephrologist in Cincinnati told > us at > her consult that her one functioning kidney may last another 5-6 years > before she'll require transplant provided she doesn't get a huge kidney > infection, > so I am scared. Chrystine is so fragile. I hear it all the time, she is > soooo little. I sometimes call her Thumbelina. She weighs around 15 > pounds, 22 > inches long. Her creatanine rose to 1.0 last night, but today it has > decreased > to 0.9, i'll take that. She has always been on a provalactic (is that how > you > spell it?) medication to prevent uti because of the cystic dysplasia and > she > has grade 5 vesicoureteral reflux. This is her first breakthrough > infection. > They haven't done a CT. I am always disappointed in her medical treatment. > > The nurses love Chrystine, but they just lack the knowledge. They are > constantly trying to check her temp with an ear thermometer and I'm like, > no-that > won't be accurate on my daughter. Her ears are made differently. I wish > they > would transfer her to Cincinnati. Actually, I would like to move us all > there. > She is doing better. She is holding formula down, and had only one febrile > > seizure today. Her blood pressure is a little high, so they increased her > atenonol. > > thanks to everyone. > i wish wish wish wish wish i could come to the conference with > chrystine... > i know miracles do happen. i know all of you know that miracles happen > too. > how lucky we are to be believers. > chrystaL > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 sounds good glad shes ok > > Chrystal, I hope she feels better soon - it's no fun to have an owie > every > time you pee pee. Give her a big hug from all of us. > Hope to see you at the conference... > > > On 2/9/07, CJCRITES@... <CJCRITES%40aol.com> <CJCRITES@...<CJCRITES%40aol.com>> > wrote: > > > > Thank you everyone for just being so wonderful. I completed that survey, > > and > > it astonished me that yes I have become more comfortable with Charge > since > > > > finding a " home " here. Chrystine is very lethargic still and I requested > > tylenol for her every 4-6 hrs. I noticed when she pee peed, she was > crying > > so hard. > > If any of you have had a kidney/uti infection, then you know, it really > > hurts. Chrystine has cystic dysplasia. Her nephrologist in Cincinnati > told > > us at > > her consult that her one functioning kidney may last another 5-6 years > > before she'll require transplant provided she doesn't get a huge kidney > > infection, > > so I am scared. Chrystine is so fragile. I hear it all the time, she is > > soooo little. I sometimes call her Thumbelina. She weighs around 15 > > pounds, 22 > > inches long. Her creatanine rose to 1.0 last night, but today it has > > decreased > > to 0.9, i'll take that. She has always been on a provalactic (is that > how > > you > > spell it?) medication to prevent uti because of the cystic dysplasia and > > she > > has grade 5 vesicoureteral reflux. This is her first breakthrough > > infection. > > They haven't done a CT. I am always disappointed in her medical > treatment. > > > > The nurses love Chrystine, but they just lack the knowledge. They are > > constantly trying to check her temp with an ear thermometer and I'm > like, > > no-that > > won't be accurate on my daughter. Her ears are made differently. I wish > > they > > would transfer her to Cincinnati. Actually, I would like to move us all > > there. > > She is doing better. She is holding formula down, and had only one > febrile > > > > seizure today. Her blood pressure is a little high, so they increased > her > > atenonol. > > > > thanks to everyone. > > i wish wish wish wish wish i could come to the conference with > > chrystine... > > i know miracles do happen. i know all of you know that miracles happen > > too. > > how lucky we are to be believers. > > chrystaL > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Chrystal, I Hope she is feeling better soon and home. Eva had a UTI last year and she only has one kidney so I know how you feel seeing your baby in pain. Give her big hugs and kisses from us. Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois > > Thank you everyone for just being so wonderful. I completed that survey, and > it astonished me that yes I have become more comfortable with Charge since > finding a " home " here. Chrystine is very lethargic still and I requested > tylenol for her every 4-6 hrs. I noticed when she pee peed, she was crying so hard. > If any of you have had a kidney/uti infection, then you know, it really > hurts. Chrystine has cystic dysplasia. Her nephrologist in Cincinnati told us at > her consult that her one functioning kidney may last another 5-6 years > before she'll require transplant provided she doesn't get a huge kidney infection, > so I am scared. Chrystine is so fragile. I hear it all the time, she is > soooo little. I sometimes call her Thumbelina. She weighs around 15 pounds, 22 > inches long. Her creatanine rose to 1.0 last night, but today it has decreased > to 0.9, i'll take that. She has always been on a provalactic (is that how you > spell it?) medication to prevent uti because of the cystic dysplasia and she > has grade 5 vesicoureteral reflux. This is her first breakthrough infection. > They haven't done a CT. I am always disappointed in her medical treatment. > The nurses love Chrystine, but they just lack the knowledge. They are > constantly trying to check her temp with an ear thermometer and I'm like, no-that > won't be accurate on my daughter. Her ears are made differently. I wish they > would transfer her to Cincinnati. Actually, I would like to move us all there. > She is doing better. She is holding formula down, and had only one febrile > seizure today. Her blood pressure is a little high, so they increased her > atenonol. > > thanks to everyone. > i wish wish wish wish wish i could come to the conference with chrystine... > i know miracles do happen. i know all of you know that miracles happen too. > how lucky we are to be believers. > chrystaL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 I also did the survey and found that i was comfortable since being here im glad to hear shes doing a little better you guys are in my thoughts and prayers and i hope you guys get home soon take care and get some rest youll need it give hugs and kisses from us mommy to {17 month old CHARGEr} & Katelynn 7year old ADHD > > Thank you everyone for just being so wonderful. I completed that survey, and > it astonished me that yes I have become more comfortable with Charge since > finding a " home " here. Chrystine is very lethargic still and I requested > tylenol for her every 4-6 hrs. I noticed when she pee peed, she was crying so hard. > If any of you have had a kidney/uti infection, then you know, it really > hurts. Chrystine has cystic dysplasia. Her nephrologist in Cincinnati told us at > her consult that her one functioning kidney may last another 5-6 years > before she'll require transplant provided she doesn't get a huge kidney infection, > so I am scared. Chrystine is so fragile. I hear it all the time, she is > soooo little. I sometimes call her Thumbelina. She weighs around 15 pounds, 22 > inches long. Her creatanine rose to 1.0 last night, but today it has decreased > to 0.9, i'll take that. She has always been on a provalactic (is that how you > spell it?) medication to prevent uti because of the cystic dysplasia and she > has grade 5 vesicoureteral reflux. This is her first breakthrough infection. > They haven't done a CT. I am always disappointed in her medical treatment. > The nurses love Chrystine, but they just lack the knowledge. They are > constantly trying to check her temp with an ear thermometer and I'm like, no-that > won't be accurate on my daughter. Her ears are made differently. I wish they > would transfer her to Cincinnati. Actually, I would like to move us all there. > She is doing better. She is holding formula down, and had only one febrile > seizure today. Her blood pressure is a little high, so they increased her > atenonol. > > thanks to everyone. > i wish wish wish wish wish i could come to the conference with chrystine... > i know miracles do happen. i know all of you know that miracles happen too. > how lucky we are to be believers. > chrystaL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Chrystal- We're sending hugs from IL!!!! I'm sorry to hear you're not feeling comforrtable with the level of knowledge for Chrystine's care but I'm glad to hear of her progress. Holding down food is always an encouraging sign, right? Janay Rasha's Mom > > Thank you everyone for just being so wonderful. I completed that survey, and > it astonished me that yes I have become more comfortable with Charge since > finding a " home " here. Chrystine is very lethargic still and I requested > tylenol for her every 4-6 hrs. I noticed when she pee peed, she was crying so hard. > If any of you have had a kidney/uti infection, then you know, it really > hurts. Chrystine has cystic dysplasia. Her nephrologist in Cincinnati told us at > her consult that her one functioning kidney may last another 5-6 years > before she'll require transplant provided she doesn't get a huge kidney infection, > so I am scared. Chrystine is so fragile. I hear it all the time, she is > soooo little. I sometimes call her Thumbelina. She weighs around 15 pounds, 22 > inches long. Her creatanine rose to 1.0 last night, but today it has decreased > to 0.9, i'll take that. She has always been on a provalactic (is that how you > spell it?) medication to prevent uti because of the cystic dysplasia and she > has grade 5 vesicoureteral reflux. This is her first breakthrough infection. > They haven't done a CT. I am always disappointed in her medical treatment. > The nurses love Chrystine, but they just lack the knowledge. They are > constantly trying to check her temp with an ear thermometer and I'm like, no-that > won't be accurate on my daughter. Her ears are made differently. I wish they > would transfer her to Cincinnati. Actually, I would like to move us all there. > She is doing better. She is holding formula down, and had only one febrile > seizure today. Her blood pressure is a little high, so they increased her > atenonol. > > thanks to everyone. > i wish wish wish wish wish i could come to the conference with chrystine... > i know miracles do happen. i know all of you know that miracles happen too. > how lucky we are to be believers. > chrystaL > > > Quote Link to comment Share on other sites More sharing options...
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