Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 Dear : I am sorry this happened to and you. We had it happen before and got into a fight with the head nurse. that is why we have it coming to our house with home health services. It aleviates alot of hassle. Is this maybe a possibility for your family? I know every insurance is different. It is also more cost effective, Take care, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: infusion stress >Date: Sat, 12 Jun 1999 18:28:18 -0400 > > > > >Hi All.. > >Well we had our infusion.. Let me just say that it was the longest 18 hours >of >my life.!!! I'm exhausted. >We decided to be hooked to a monitor and blood pressure cuff instead of >them stirring every hour for vitals. This was no better. And let >me say that my old body was not cut out of waking up every hour. >We started thursday morning with a blown vein by a nurse who has never >stuck before. (never to happen again). Then she finally got him >on the 2nd stick. We started the IVIG at 2 ml per hour then progressed to >9 ml per hour. (he gets 150 ml) Anyway by the 15 hour or so, the vein >began to get tired from not having enough volume. So the last hour, >was squirming in pain and dying to get the thing out of his arm. So it >appears >that an 18 hour infusion might help side effects but the veins arent up to >it. >(we are waiting to see if we get that big migraine this time. If we do we >are >going back to 12 hours for 's comfort and my sanity.) > >OH AND PLEASE LET ME VENT, PLEASE!!!! As long as has been >going to this hospital (12 years now)..we have been going to the cafeteria >for supper >as long as he was not contagious or very ill. Well, we get this new nurse, >who blew >his vein, who decides everyone in the world has to abide by hospital >security, safety >policies. There was no reasoning, or calling the doc or anything. Just >her insisting >that she was right and we were wrong. Now, I say to a child who's never >been >there and is very ill, so be it. But to a child who shouldn't be punished >for having >to get an IV infusion once a month, I dont think a trip to the cafeteria is >too much >to ask. We always take two people and we know how to run the pumps and >he has never had a severe reaction. Last time we were admitted a new nurse >yelled >at me for letting my son raise his bed up even though I was sitting next to >him and >having a conversation with him.. She said I wasnt looking out for his >safety. Holy >cow!!! I want to scream. Do these nurses think they are God? And have they >no compassion for the chronically ill? Are there no exceptions for >frequent flyers? >Even airlines make exceptions..!! >*whew* I feel much better now.. > >Hope all is well and thanks so much for your kind thoughts and prayers. >Oh, and one last thing..!! I bought a piano today and he doesn't >know >it yet! He already plays trumpet, flute, and clarinet. Can't wait to see >the >look on his face. One day you will be reading about him and his >accomplishments. >I just know it!! > >Michele -mother to (12) IgG def, selective antibody def, >asthma, >migraines, tummy troubles. > > > > >------------------------------------------------------------------------ >Campaign 2000 is here! >http://www.onelist.com >Discuss your thoughts; get informed at ONElist. See our homepage. >------------------------------------------------------------------------ >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 Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 Dear , You seem to have similar experiences in the military hospital way. When we complained on post my husband was reprimanded for having a wife with a big mouth. Then we got shipped to overseas assignment with a sick infant. I can relate and hope more military wives and civilian alike had your fortitude. sincerely, annette mom to alissa cvid asthmatic also member of EFMP services Luke afb.Az > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: infusion stress >Date: Sat, 12 Jun 1999 18:53:01 -0400 > > > >VENT AWAY MICHELE, JUST VENT AWAY!!!! > >I know exactly how you feel, but from another aspect. OK, MY TURN TO VENT >(ALMOST A YEAR LATER),. When was born last may he spent 9 weeks and >6 >days in the NICU to which I was there every day and several nights, and my >hubby was there at night and some days to always include weekends between >the two of us. THEN, he left on July 14th and starting on the 24th he was >repeatedly admitted for brain surgery every weekend for the rest of July >and >August. Well, during his NICU stay, we loved it and the nurses and doctors >were great and they kept us pretty informed about everything. The >neurosurgeon team after the NICU was another story. They never told us >anything and even the nurses treated us like crap. Since we had 2 little >girls at home I spent the time at the hospital and running them back and >forth to sitters because my hubby couldn't get any time off (he is a >Marine), but everytime I even went to the bathroom or for coffee the nurses >treated my like I was a criminal. THEN, they discharged my son after I >informed the surgeon that his head had grown and he was showing symptoms of >swelling and his CT scan looked like crap. He told me to take my son home, >and that I didn't know what I was talking about and he was a doctor, >Argg!!! Well I took home and 3 days later he was readmitted to sit >in >a bed for 4 days before any doctor would speak to us, to which they said he >needed surgery again. Well, my hubby and I were so depressed by the way we >all were being treated that neither of us could bare to go up to the >hospital, so we opted to call instead and check in on him for the weekend, >and also take the oportunity to go van hunting, something that we >desperately needed (we were a family of 5 driving in a mustang, not quite >safe). Well then we get a call from the social worker that we are negegent >and what are we doing to cause our son to need repeated surgery. OK, this >is where we finally went off. We filed a complaint and well, lots of >nurses >and other staff got moved or fired, and (could be a coincedence) but the >chief pediatric neurosurgeon was replaced by s current doctor who >became the new chief. MMMMM. And ya know what, we get great care now, >HAHAHAHA!! I WONDER WHY!!! (Our names have been flagged at the hospital as >be nice to them they know what they are doing and talking about). > >OK, I am done with my venting too. but , I would definitely talk >to >your doctor or hospital admin department about letting your son move around >during IVIG treatments. > > >, wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months >Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families >Registered Chat for Preemies Friends and Family > >Do not judge, so that you may not be judged. > For with the judgment you make you will be judged, >and the measure you give will be the measure you get. >why do you see the speck in your neighbor's eye, >but do not notice the log in your own eye? >You hypocrite, first take the log out of your own eye, >and then you will see clearly to take the speck out of your neighbor's eye. > 7.1-5 > >sorry for the long post!! > > >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " >http://www.onelist.com >Deadline is June 19. See homepage for details. >------------------------------------------------------------------------ >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 Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 Dear : We had our immunologist request it from our military HMO which is tricare. I don't know if you all are covered under tricare. This is the healthcare HMO for the Air Force and Army in our area in Arizona. If I can be further help please let me know. God Bless, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: infusion stress >Date: Sat, 12 Jun 1999 20:30:52 -0400 > > > >Hi Annette, >How did you work it with the insurance company to do it. is too much >at risk right now, but I would like to know for future reference. > > >, wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months >Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families >Registered Chat for Preemies Friends and Family > >Do not judge, so that you may not be judged. > For with the judgment you make you will be judged, >and the measure you give will be the measure you get. >why do you see the speck in your neighbor's eye, >but do not notice the log in your own eye? >You hypocrite, first take the log out of your own eye, >and then you will see clearly to take the speck out of your neighbor's eye. > 7.1-5 > infusion stress > >>Date: Sat, 12 Jun 1999 18:28:18 -0400 > >> > >> > >> > >> > >>Hi All.. > >> > >>Well we had our infusion.. Let me just say that it was the longest 18 >hours > >>of > >>my life.!!! I'm exhausted. > >>We decided to be hooked to a monitor and blood pressure cuff instead of > >>them stirring every hour for vitals. This was no better. And >let > >>me say that my old body was not cut out of waking up every hour. > >>We started thursday morning with a blown vein by a nurse who has never > >>stuck before. (never to happen again). Then she finally got him > >>on the 2nd stick. We started the IVIG at 2 ml per hour then progressed >to > >>9 ml per hour. (he gets 150 ml) Anyway by the 15 hour or so, the vein > >>began to get tired from not having enough volume. So the last hour, > > >>was squirming in pain and dying to get the thing out of his arm. So it > >>appears > >>that an 18 hour infusion might help side effects but the veins arent up >to > >>it. > >>(we are waiting to see if we get that big migraine this time. If we do >we > >>are > >>going back to 12 hours for 's comfort and my sanity.) > >> > >>OH AND PLEASE LET ME VENT, PLEASE!!!! As long as has been > >>going to this hospital (12 years now)..we have been going to the >cafeteria > >>for supper > >>as long as he was not contagious or very ill. Well, we get this new >nurse, > >>who blew > >>his vein, who decides everyone in the world has to abide by hospital > >>security, safety > >>policies. There was no reasoning, or calling the doc or anything. Just > >>her insisting > >>that she was right and we were wrong. Now, I say to a child who's never > >>been > >>there and is very ill, so be it. But to a child who shouldn't be >punished > >>for having > >>to get an IV infusion once a month, I dont think a trip to the cafeteria >is > >>too much > >>to ask. We always take two people and we know how to run the pumps and > >>he has never had a severe reaction. Last time we were admitted a new >nurse > >>yelled > >>at me for letting my son raise his bed up even though I was sitting next >to > >>him and > >>having a conversation with him.. She said I wasnt looking out for his > >>safety. Holy > >>cow!!! I want to scream. Do these nurses think they are God? And have >they > >>no compassion for the chronically ill? Are there no exceptions for > >>frequent flyers? > >>Even airlines make exceptions..!! > >>*whew* I feel much better now.. > >> > >>Hope all is well and thanks so much for your kind thoughts and prayers. > >>Oh, and one last thing..!! I bought a piano today and he doesn't > >>know > >>it yet! He already plays trumpet, flute, and clarinet. Can't wait to >see > >>the > >>look on his face. One day you will be reading about him and his > >>accomplishments. > >>I just know it!! > >> > >>Michele -mother to (12) IgG def, selective antibody def, > >>asthma, > >>migraines, tummy troubles. > >> > >> > >> > >> > >>------------------------------------------------------------------------ > >>Campaign 2000 is here! > >>http://www.onelist.com > >>Discuss your thoughts; get informed at ONElist. See our homepage. > >>------------------------------------------------------------------------ > >>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 Free Email and Do More On The Web. Visit http://www.msn.com > > > >------------------------------------------------------------------------ > >How many communities do you think join ONElist each week? > >http://www.onelist.com > >More than 5,000! Create yours now! > >------------------------------------------------------------------------ > >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. > > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of over 165,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >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 Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 HEY, You don't live in GA do you? We had the same problem getting s records last year. I asked for copies of all of his med records and they only gave me lab results, duh!!! and to top it I went back 5 times and they continued to give me what I already had, double duh!!! And to date, they have not given our appointed " person " any of the records we have requested. GRRRRRR!!! , wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families Registered Chat for Preemies Friends and Family Do not judge, so that you may not be judged. For with the judgment you make you will be judged, and the measure you give will be the measure you get. why do you see the speck in your neighbor's eye, but do not notice the log in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your neighbor's eye. 7.1-5 Re: infusion stress > > >Hospitals grrrrrrrrr >Can I vent too........ > >These people at hospitals think they rule the world and what ever they >do is right. We as parents have no rights or common sense. My turn to >vent > > > has ben neutropenic since about 6 months old. We were told that >she is not to wait in the waiting room at the ER. Well I brought her >in her lips were blue and having a hard time breathing. Told them that >she was neutropenic. They wanted me to wait in the waiting room!!! Bo >did they hear from me. Besides the fact that she couldn't breath. The >dr comes in to ook at her. Order breathing treatments after 3 >treatments in 2 hours send us home no e-rays. did do a cbc absolute >neutrofil count ZERO and send her home. He said all she has is croup . > Said she was breathing better. was livid. (I didn't realizre I could >have said I wanted her admitted for observation) Well 3 hours later I >called the on call dr and demanded that he meet us at the hospital. >Needless to say not only did she have croup but an infiltrated lung. >She spent a week under an oxyen tent. And this dr sent us home. > >This same hospital gave me such a time getting 's med records. I >called 4 times and left message on voice mail telling them hre name DOB >when I needed the records that I would sign the release when I picked >them up my home phone. When I went to pick them up they weren't ready. > Then said they can have them to me by Tuesday. Told them I didn't >need them Tues. It was too late then. Then for some reason on I >wasn't listed as next of kin. My husband was and they wanted him to >fax him a release. I was mad. I signed every authorization to be >treated. Needless to say they currired them over later that night. > > >=== > and >(neutropenic and immune deficent) >mom to Evan 6, 4 and Abby Rose (almost 2) >_________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 Hi Annette, How did you work it with the insurance company to do it. is too much at risk right now, but I would like to know for future reference. , wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families Registered Chat for Preemies Friends and Family Do not judge, so that you may not be judged. For with the judgment you make you will be judged, and the measure you give will be the measure you get. why do you see the speck in your neighbor's eye, but do not notice the log in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your neighbor's eye. 7.1-5 infusion stress >>Date: Sat, 12 Jun 1999 18:28:18 -0400 >> >> >> >> >>Hi All.. >> >>Well we had our infusion.. Let me just say that it was the longest 18 hours >>of >>my life.!!! I'm exhausted. >>We decided to be hooked to a monitor and blood pressure cuff instead of >>them stirring every hour for vitals. This was no better. And let >>me say that my old body was not cut out of waking up every hour. >>We started thursday morning with a blown vein by a nurse who has never >>stuck before. (never to happen again). Then she finally got him >>on the 2nd stick. We started the IVIG at 2 ml per hour then progressed to >>9 ml per hour. (he gets 150 ml) Anyway by the 15 hour or so, the vein >>began to get tired from not having enough volume. So the last hour, >>was squirming in pain and dying to get the thing out of his arm. So it >>appears >>that an 18 hour infusion might help side effects but the veins arent up to >>it. >>(we are waiting to see if we get that big migraine this time. If we do we >>are >>going back to 12 hours for 's comfort and my sanity.) >> >>OH AND PLEASE LET ME VENT, PLEASE!!!! As long as has been >>going to this hospital (12 years now)..we have been going to the cafeteria >>for supper >>as long as he was not contagious or very ill. Well, we get this new nurse, >>who blew >>his vein, who decides everyone in the world has to abide by hospital >>security, safety >>policies. There was no reasoning, or calling the doc or anything. Just >>her insisting >>that she was right and we were wrong. Now, I say to a child who's never >>been >>there and is very ill, so be it. But to a child who shouldn't be punished >>for having >>to get an IV infusion once a month, I dont think a trip to the cafeteria is >>too much >>to ask. We always take two people and we know how to run the pumps and >>he has never had a severe reaction. Last time we were admitted a new nurse >>yelled >>at me for letting my son raise his bed up even though I was sitting next to >>him and >>having a conversation with him.. She said I wasnt looking out for his >>safety. Holy >>cow!!! I want to scream. Do these nurses think they are God? And have they >>no compassion for the chronically ill? Are there no exceptions for >>frequent flyers? >>Even airlines make exceptions..!! >>*whew* I feel much better now.. >> >>Hope all is well and thanks so much for your kind thoughts and prayers. >>Oh, and one last thing..!! I bought a piano today and he doesn't >>know >>it yet! He already plays trumpet, flute, and clarinet. Can't wait to see >>the >>look on his face. One day you will be reading about him and his >>accomplishments. >>I just know it!! >> >>Michele -mother to (12) IgG def, selective antibody def, >>asthma, >>migraines, tummy troubles. >> >> >> >> >>------------------------------------------------------------------------ >>Campaign 2000 is here! >>http://www.onelist.com >>Discuss your thoughts; get informed at ONElist. See our homepage. >>------------------------------------------------------------------------ >>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 Free Email and Do More On The Web. Visit http://www.msn.com > >------------------------------------------------------------------------ >How many communities do you think join ONElist each week? >http://www.onelist.com >More than 5,000! Create yours now! >------------------------------------------------------------------------ >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...
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