Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Reading your email about Zach has bought tears to my eyes. I am so sorry you have just gone through that experience in hospital with him- it must have been terrifying not knowing what was going on and why. Yes, it does sound as if you are going to be much better off switching Zachs doctors. Why does it need to get so bad before they will begin to relise what you have already been trying to tell them??? That is such an upsetting part of having a child with pid- finding the right drs who UNDERSTAND! Please let us know how Zachary is doing now. Is he out of hospital? Did they do any new bloodwork? All my best, . and s mum Life has been overwhelming lately(long-sorry) > > > > Clear DayBut I also know things aren't going to get much better for a > while. The last 8wks that dh was gone was hard, especially when Zach ended > up in the hospital due to the " Lack " of care from the drs. He had a CT scan > done showing his sinuses where " opaque " and the peds referred him back to > the ENT. Well the ENT said until the drs take care of Zachs immune problems > and reflux problems that he wasn't doing another surgery. He said it was > like calling in a plumber to unstuff a toilet, without taking care of the > reason why it was getting stuffed in the first place. Well this left the > peds stumped..and they didn't know what to do with Zach. I pleaded with them > for over a wk and a half after the results came in that Zach needed > something because of the fever he kept running, and they dragged their feet > not knowing what to give him since he had just finished 3wks of cleocin > before the CT scan. We went in 3 times to see the dr, was put on steriods, > and constant (every 4 hours) albuterol treatments, nasonex spray, and nasal > washes, but things continued to go down hill. We where in the office in the > morning the day everything crashed. We had the appt. Zach had a 100.9 when > we were in there in the morning. When the dr called us almost a hour and > half later he was up to 102.4. The ped said to just medicate him with the > tylenol and motrin, that it was from the sinus infection. Well the day > progressed and Zach continued to climb even with both meds. By that night at > 7 he had a 104.8 and he wouldn't let me move him. We proceded to go to the > ER and when we got there I got yelled at by the nurse about letting his > fever get so high...she didnt even let me get it out that he was being > medicated. She also told me that I shouldn't have put him in the car without > giving him some phenobarbital, ( he wasn't due for a dose) I was upset, but > really couldn't care what her opinion on things were. We were seen right > away and the dr was very concerned. He said that Zachs breathing sounded > like he had pneumonia(which the xray showed he did). and he ordered > antibiotics and fluids by IV. This is when things got scary, Zachs body > temperature took a big fall. He fell all the way down to 94.6. They started > to warm IV solution bags and packing them around him to try to get his > temperature up. It was a very long night/morning in the ER while they worked > on trying to get his body temperature up. The labs said that his white count > was VERY high(can't remember the #'s) and that his Co2 level was also high. > There was a few other levels that was really off. The ER dr told me in the > ER that Zach probably had sepsis, but after treatment with the antibiotics > all of his bloodwork came back clean.He finally stablized and we were sent > upstairs for the rest of our stay. My question to you all is has ANYONE ever > heard of this happening?? None of the drs can give me a answer on this. And > I'm very concerned about this happening again.(Zach usually runs a low body > temp-has since birth 97.4) No one seems to be addressing Zachs health > problems right now, and the ER dr was beside himself on the care that Zach > has recieved(or lack of). We are now in the midst of changing all his > specialist to another hospital. This past week was the last straw for me. > Zach had endoscopy done with biospy, and the GI's office called to tell me > that he has esophagitis. This really upset me due that they just weren't > treating him aggressively on anything...3 tests in the last month in a > half(ph probe, CT scan & the endoscopy) and all 3 tests show things are > really going down hill. I'm stressed, and overwhelmed. My family is facing a > move, due to my husbands work moving, and I don't know how I'm going to do > this with Zach. Sorry to go on like this, but you all are the only ones I > know that know how it feels to deal with multiple health problems in the > little ones. I feel really bad that I haven't been much of a active part of > this group..hopefully I will soon get back on track ...I have learned SO > much from all of you, and even though I don't get the chance to post, you > guys have been a comfort for me when I read!.~MG and Zachary(23mo)Central > and Obstructive Apnea,Reflux,Esophagitis,Asthma,Chronic > Sinusitis,Angioedema,Urticaria, Laryngo Malicia,Epispadias,Seizure > Disorder,Deficiency in Total IgG, Deficiency in IgG subclass 1,Borderline > Deficiency in subclass 3, High IgE, Latex Allergic, Multiple Antibiotic & > Food Allergies, Chronic Diaherra and reoccurring C-diff & > Thrush,Adenoidectomy(at 6wks),Epiglottoplasty(at3 1/2 mo), Tonsillectomy(at > 17mo) on Phenobarbital,Intal,Nasonex, Albuterol, Reglan and Prilosec > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Clear Day, Zachary is doing better and is home. We are just continuing his breathing treatments here-and he is improving. Right now we are also trying to deal with his constant rashes and hives. I tried for the first time in months to take him to church as a family yesterday and he broke out in hives all over, and then went into a long day of sleeping and having fits of crying when he would awake, then going right back to sleep. I'm really at a loss on what to do. We are in the midst of a nasty battle on trying to get him to a immunologist. Right now the HMO(insurance) that we have only covers allergists-which they catagorized as allergist/immunologists in the caregiver booklet. I did get in touch with our local IDF person and she told me that the hospital that we are transferring too for all Zachs specialists has the immunologist that they recommend for us to use..so I'm hoping that Zachs specialists will at least consult with him, or we can work out someway for us to use him without the insurance coverage. Right now I would sell everything I own if I could just get the proper care for Zachary. They did do some blood work at the hospital, but as far as I know did not look at his IgG levels, so I don't know where we stand with that right now. I know that he had continued to fall from the testing that they had done from Dec to Feb, and my ped's plans are to test again next month. Thanks again for being here! ~MG and Zachary <Reading your email about Zach has bought tears to my eyes. I am so sorry you have just gone through that experience in hospital with him- it must have been terrifying not knowing what was going on and why. Yes, it does sound as if you are going to be much better off switching Zachs doctors. Why does it need to get so bad before they will begin to relise what you have already been trying to tell them??? That is such an upsetting part of having a child with pid- finding the right drs who UNDERSTAND! Please let us know how Zachary is doing now. Is he out of hospital? Did they do any new bloodwork? All my best, . and s mum> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Clear Day, Zachary is doing better and is home. We are just continuing his breathing treatments here-and he is improving. Right now we are also trying to deal with his constant rashes and hives. I tried for the first time in months to take him to church as a family yesterday and he broke out in hives all over, and then went into a long day of sleeping and having fits of crying when he would awake, then going right back to sleep. I'm really at a loss on what to do. We are in the midst of a nasty battle on trying to get him to a immunologist. Right now the HMO(insurance) that we have only covers allergists-which they catagorized as allergist/immunologists in the caregiver booklet. I did get in touch with our local IDF person and she told me that the hospital that we are transferring too for all Zachs specialists has the immunologist that they recommend for us to use..so I'm hoping that Zachs specialists will at least consult with him, or we can work out someway for us to use him without the insurance coverage. Right now I would sell everything I own if I could just get the proper care for Zachary. They did do some blood work at the hospital, but as far as I know did not look at his IgG levels, so I don't know where we stand with that right now. I know that he had continued to fall from the testing that they had done from Dec to Feb, and my ped's plans are to test again next month. Thanks again for being here! ~MG and Zachary <Reading your email about Zach has bought tears to my eyes. I am so sorry you have just gone through that experience in hospital with him- it must have been terrifying not knowing what was going on and why. Yes, it does sound as if you are going to be much better off switching Zachs doctors. Why does it need to get so bad before they will begin to relise what you have already been trying to tell them??? That is such an upsetting part of having a child with pid- finding the right drs who UNDERSTAND! Please let us know how Zachary is doing now. Is he out of hospital? Did they do any new bloodwork? All my best, . and s mum> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 MG, I am glad to hear that Zachary is doing ok at home with the breathing treatments. I hope he will continue to improve and that you will be able to avoid going back to the hospital for any further treatment for this current infection. Take care, Re: Zachs mum > Clear Day, > > Zachary is doing better and is home. We are just continuing his breathing treatments here-and he is improving. Right now we are also trying to deal with his constant rashes and hives. I tried for the first time in months to take him to church as a family yesterday and he broke out in hives all over, and then went into a long day of sleeping and having fits of crying when he would awake, then going right back to sleep. I'm really at a loss on what to do. We are in the midst of a nasty battle on trying to get him to a immunologist. Right now the HMO(insurance) that we have only covers allergists-which they catagorized as allergist/immunologists in the caregiver booklet. I did get in touch with our local IDF person and she told me that the hospital that we are transferring too for all Zachs specialists has the immunologist that they recommend for us to use..so I'm hoping that Zachs specialists will at least consult with him, or we can work out someway for us to use him without the insurance coverage. Right now I would sell everything I own if I could just get the proper care for Zachary. They did do some blood work at the hospital, but as far as I know did not look at his IgG levels, so I don't know where we stand with that right now. I know that he had continued to fall from the testing that they had done from Dec to Feb, and my ped's plans are to test again next month. Thanks again for being here! ~MG and Zachary > > > > > <Reading your email about Zach has bought tears to my eyes. I am so sorry you > have just gone through that experience in hospital with him- it must have > been terrifying not knowing what was going on and why. Yes, it does sound > as if you are going to be much better off switching Zachs doctors. Why does > it need to get so bad before they will begin to relise what you have already > been trying to tell them??? That is such an upsetting part of having a > child with pid- finding the right drs who UNDERSTAND! > Please let us know how Zachary is doing now. Is he out of hospital? Did > they do any new bloodwork? > > All my best, > > . and s mum> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 MG, I am glad to hear that Zachary is doing ok at home with the breathing treatments. I hope he will continue to improve and that you will be able to avoid going back to the hospital for any further treatment for this current infection. Take care, Re: Zachs mum > Clear Day, > > Zachary is doing better and is home. We are just continuing his breathing treatments here-and he is improving. Right now we are also trying to deal with his constant rashes and hives. I tried for the first time in months to take him to church as a family yesterday and he broke out in hives all over, and then went into a long day of sleeping and having fits of crying when he would awake, then going right back to sleep. I'm really at a loss on what to do. We are in the midst of a nasty battle on trying to get him to a immunologist. Right now the HMO(insurance) that we have only covers allergists-which they catagorized as allergist/immunologists in the caregiver booklet. I did get in touch with our local IDF person and she told me that the hospital that we are transferring too for all Zachs specialists has the immunologist that they recommend for us to use..so I'm hoping that Zachs specialists will at least consult with him, or we can work out someway for us to use him without the insurance coverage. Right now I would sell everything I own if I could just get the proper care for Zachary. They did do some blood work at the hospital, but as far as I know did not look at his IgG levels, so I don't know where we stand with that right now. I know that he had continued to fall from the testing that they had done from Dec to Feb, and my ped's plans are to test again next month. Thanks again for being here! ~MG and Zachary > > > > > <Reading your email about Zach has bought tears to my eyes. I am so sorry you > have just gone through that experience in hospital with him- it must have > been terrifying not knowing what was going on and why. Yes, it does sound > as if you are going to be much better off switching Zachs doctors. Why does > it need to get so bad before they will begin to relise what you have already > been trying to tell them??? That is such an upsetting part of having a > child with pid- finding the right drs who UNDERSTAND! > Please let us know how Zachary is doing now. Is he out of hospital? Did > they do any new bloodwork? > > All my best, > > . and s mum> > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.