Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 , It has been a while since I posted but I do try to read,at least every few days. We havn't done anything about any kind of breathing machine.I called our local MDA but was told they would have to get back to me.Haven't heard anything from them as yet.We have increased her precussion treatment,she has " the vest " .This has seemed to help. has had a rough month or so.She had a VERY bad ear infection.I noticed some drainage but didn't think anything of it,she had just had her hair washed, besides she hasn't had an ear infection in years and never one that drained.I did pay attention the next day when there was more drainage.A round of Zitromax, 2 Rocefren shots,Cipro ear drops,4 doc visits and a ruptured ear drum later the ear is better.Thank goodness!! A couple of weeks ago,while having one of her jerking spells she got hold of her feeding tube and pulled it out.She has the type that has to be put in by the doctor. We went to the hospital,has the new tube put in,got home it would work one time and not work the next.Back to the hospital the next day,adjusted the tube,got home it would work one time and not the next.Back to the hospital the next day,they had gotten in the wrong tubes and didn't have her kind,adjusted the tube came home ,same as before.By this time I'm thinking maybe there is something wrong in her belly.After all she did pull the thing out,balloon and all.I called the surgeon,she's on vacation,but we can get in to see her July 13,I don't think so!! Talked to doc here,he decided to do an upper GI just to be on the safe side.Every thing was okay,including the tube.By now they do have " her " tubes in and I want one.I told the doc this,he didn't think it was necesary,I told him again I WANT A NEW TUBE!!!! We got the new one and so far ,it been over a week,it's working just fine. The meds they gave her for the GI testing,it was some kind of clear liquid,made her sick.She tried to vomit but couldn't,she has a neisen,but she could choke and did.I think she aspirated some of the junk.Coughing all the next week,her doc was out sick himself but he did send her med and we had the HH nurse come out to ck her.Lungs sounded about the same,very low volume,but no pneumonia. It also gave her diarrhea for several days which in itself was not good. Last week it was yeast infection from all the meds,on her bottom and her under her breast.And let me say the kid has got boobs,she didn't take after me in that department.LOL We've been trying to get her Albumin and total protein levels up.Started her on protein powder.Gave her more milk,but the milk raised her blood sugar too much.Over 250 on several occasions.Decreased the milk increased the protein powder.This has helped with the sugar,I think the highest it's been since the change is 135. Now if we can just get over the jerkys,she always gets them when she's sick,we'll be back to our " normal " abnormal selves.They are getting better. I did say this was long ! Thanks for asking about us and I hope all is well with you and yours. ,Mom to From: To: Sent: Saturday, June 26, 2004 11:28 AM Subject: / , How are things going? I have been thinking about you and . DeMoss wrote: > seems to be having more problems with her breathing.She pretty much stays on O2 24/7 now.with the o2 her level is staying @ 95-98,which is very good, but she just wears herself out breathing so hard.I've called it belly breathing before but it's even more than that now,I don't even know how to explain it. > She has had deminished lung volume for some time,doesn't inflate base well,very shallow breaths. > My ? is would c-pap or bi-pap help with this? What is the difference in the two? Can either be used as needed or once on one is it something you need 24 hrs a day? > All help appreciated. > Thanks,,Mom to > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 It sounds as if you and have had a very rough time of it. I wish there was something I could do to help. Hugs, laurie > > Reply-To: > Date: Mon, 28 Jun 2004 23:09:02 -0500 > To: > > Subject: Re: / LONG > > , > It has been a while since I posted but I do try to read,at least every few > days. > > We havn't done anything about any kind of breathing machine.I called our local > MDA but was told they would have to get back to me.Haven't heard anything from > them as yet.We have increased her precussion treatment,she has " the vest " .This > has seemed to help. > > has had a rough month or so.She had a VERY bad ear infection.I noticed > some drainage but didn't think anything of it,she had just had her hair > washed, besides she hasn't had an ear infection in years and never one that > drained.I did pay attention the next day when there was more drainage.A round > of Zitromax, 2 Rocefren shots,Cipro ear drops,4 doc visits and a ruptured ear > drum later the ear is better.Thank goodness!! > > A couple of weeks ago,while having one of her jerking spells she got hold of > her feeding tube and pulled it out.She has the type that has to be put in by > the doctor. We went to the hospital,has the new tube put in,got home it would > work one time and not work the next.Back to the hospital the next day,adjusted > the tube,got home it would work one time and not the next.Back to the hospital > the next day,they had gotten in the wrong tubes and didn't have her > kind,adjusted the tube came home ,same as before.By this time I'm thinking > maybe there is something wrong in her belly.After all she did pull the thing > out,balloon and all.I called the surgeon,she's on vacation,but we can get in > to see her July 13,I don't think so!! Talked to doc here,he decided to do an > upper GI just to be on the safe side.Every thing was okay,including the > tube.By now they do have " her " tubes in and I want one.I told the doc this,he > didn't think it was necesary,I told him again I WANT A NEW TUBE!!!! We got the > new one and so far ,it been over a week,it's working just fine. > > The meds they gave her for the GI testing,it was some kind of clear > liquid,made her sick.She tried to vomit but couldn't,she has a neisen,but she > could choke and did.I think she aspirated some of the junk.Coughing all the > next week,her doc was out sick himself but he did send her med and we had the > HH nurse come out to ck her.Lungs sounded about the same,very low volume,but > no pneumonia. It also gave her diarrhea for several days which in itself was > not good. > > Last week it was yeast infection from all the meds,on her bottom and her under > her breast.And let me say the kid has got boobs,she didn't take after me in > that department.LOL > > We've been trying to get her Albumin and total protein levels up.Started her > on protein powder.Gave her more milk,but the milk raised her blood sugar too > much.Over 250 on several occasions.Decreased the milk increased the protein > powder.This has helped with the sugar,I think the highest it's been since the > change is 135. > > Now if we can just get over the jerkys,she always gets them when she's > sick,we'll be back to our " normal " abnormal selves.They are getting better. > > I did say this was long ! > > Thanks for asking about us and I hope all is well with you and yours. > > ,Mom to > From: > To: > Sent: Saturday, June 26, 2004 11:28 AM > Subject: / > > > , > > How are things going? I have been thinking about you and . > > > > DeMoss wrote: > >> seems to be having more problems with her breathing.She pretty much >> stays on O2 24/7 now.with the o2 her level is staying @ 95-98,which is very >> good, but she just wears herself out breathing so hard.I've called it belly >> breathing before but it's even more than that now,I don't even know how to >> explain it. >> She has had deminished lung volume for some time,doesn't inflate base >> well,very shallow breaths. >> My ? is would c-pap or bi-pap help with this? What is the difference in the >> two? Can either be used as needed or once on one is it something you need 24 >> hrs a day? >> All help appreciated. >> Thanks,,Mom to >> >> >> >> >> > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 , I'm sorry to hear that has had such a rough month. Keep at MDA about the respiratory issues. Make a clinic appointment for her and don't stop fighting for the things that may make more comfortable. Sometimes the staff in the MDA offices are volunteers that may not even have a clue what patients are going through. Keep your chin up and give a gentle hug for me. I am sending you one too! DeMoss wrote: >, >It has been a while since I posted but I do try to read,at least every few days. > >We havn't done anything about any kind of breathing machine.I called our local MDA but was told they would have to get back to me.Haven't heard anything from them as yet.We have increased her precussion treatment,she has " the vest " .This has seemed to help. > > has had a rough month or so.She had a VERY bad ear infection.I noticed some drainage but didn't think anything of it,she had just had her hair washed, besides she hasn't had an ear infection in years and never one that drained.I did pay attention the next day when there was more drainage.A round of Zitromax, 2 Rocefren shots,Cipro ear drops,4 doc visits and a ruptured ear drum later the ear is better.Thank goodness!! > >A couple of weeks ago,while having one of her jerking spells she got hold of her feeding tube and pulled it out.She has the type that has to be put in by the doctor. We went to the hospital,has the new tube put in,got home it would work one time and not work the next.Back to the hospital the next day,adjusted the tube,got home it would work one time and not the next.Back to the hospital the next day,they had gotten in the wrong tubes and didn't have her kind,adjusted the tube came home ,same as before.By this time I'm thinking maybe there is something wrong in her belly.After all she did pull the thing out,balloon and all.I called the surgeon,she's on vacation,but we can get in to see her July 13,I don't think so!! Talked to doc here,he decided to do an upper GI just to be on the safe side.Every thing was okay,including the tube.By now they do have " her " tubes in and I want one.I told the doc this,he didn't think it was necesary,I told him again I WANT A NEW TUBE!!!! We got the new one and so far ,it been over a week,it's working just fine. > >The meds they gave her for the GI testing,it was some kind of clear liquid,made her sick.She tried to vomit but couldn't,she has a neisen,but she could choke and did.I think she aspirated some of the junk.Coughing all the next week,her doc was out sick himself but he did send her med and we had the HH nurse come out to ck her.Lungs sounded about the same,very low volume,but no pneumonia. It also gave her diarrhea for several days which in itself was not good. > >Last week it was yeast infection from all the meds,on her bottom and her under her breast.And let me say the kid has got boobs,she didn't take after me in that department.LOL > >We've been trying to get her Albumin and total protein levels up.Started her on protein powder.Gave her more milk,but the milk raised her blood sugar too much.Over 250 on several occasions.Decreased the milk increased the protein powder.This has helped with the sugar,I think the highest it's been since the change is 135. > >Now if we can just get over the jerkys,she always gets them when she's sick,we'll be back to our " normal " abnormal selves.They are getting better. > >I did say this was long ! > >Thanks for asking about us and I hope all is well with you and yours. > >,Mom to >From: > To: > Sent: Saturday, June 26, 2004 11:28 AM > Subject: / > > > , > > How are things going? I have been thinking about you and . > > > > DeMoss wrote: > > > seems to be having more problems with her breathing.She pretty much stays on O2 24/7 now.with the o2 her level is staying @ 95-98,which is very good, but she just wears herself out breathing so hard.I've called it belly breathing before but it's even more than that now,I don't even know how to explain it. > > She has had deminished lung volume for some time,doesn't inflate base well,very shallow breaths. > > My ? is would c-pap or bi-pap help with this? What is the difference in the two? Can either be used as needed or once on one is it something you need 24 hrs a day? > > All help appreciated. > > Thanks,,Mom to > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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