We're back from evaluation

S

shammi80

New member
Good luck on the transplant situation, my brother Shaylan passed away from CF 12-28-06. He was 27 but he got 7 good years from his. The transplant was such a confusing thing for me, I was overjoyed he lived but at the same time I knew what it took for him to get his lungs. Anyways good luck and god bless to all the families battling CF and the families brave enough to donate organs and make a difference in our lives.

--------------------------------------
Shammi 26, CF carrier
mother of Jadalyn 6, CF carrier
sister of Shaylan, CF, 10-29-79 to 12-28-06

Yahoo messenger id Shammi_80
email Shammi_80@yahoo.com
 
S

shammi80

New member
Good luck on the transplant situation, my brother Shaylan passed away from CF 12-28-06. He was 27 but he got 7 good years from his. The transplant was such a confusing thing for me, I was overjoyed he lived but at the same time I knew what it took for him to get his lungs. Anyways good luck and god bless to all the families battling CF and the families brave enough to donate organs and make a difference in our lives.

--------------------------------------
Shammi 26, CF carrier
mother of Jadalyn 6, CF carrier
sister of Shaylan, CF, 10-29-79 to 12-28-06

Yahoo messenger id Shammi_80
email Shammi_80@yahoo.com
 
S

shammi80

New member
Good luck on the transplant situation, my brother Shaylan passed away from CF 12-28-06. He was 27 but he got 7 good years from his. The transplant was such a confusing thing for me, I was overjoyed he lived but at the same time I knew what it took for him to get his lungs. Anyways good luck and god bless to all the families battling CF and the families brave enough to donate organs and make a difference in our lives.

--------------------------------------
Shammi 26, CF carrier
mother of Jadalyn 6, CF carrier
sister of Shaylan, CF, 10-29-79 to 12-28-06

Yahoo messenger id Shammi_80
email Shammi_80@yahoo.com
 
L

Liza

New member
Hi Kathy, Anna informed me that I didn't answer your question about the heart cath. We are washing clothes watching GH packing up some more of her stuff and moving her dishes to her room so my husband will pack them up when he comes to pack up her room in the next few weeks. I don't want him to say, "oh just leave it." Then I'll have to buy it all over again when it comes time for her to move into another apartment. We are expecting horrible weather on our drive back so we are going to get a head start later this afternoon. Oklahoma is expecting more snowy ice. UGH! I'm sorry your husbands visit ended up being a bust. The flu is no fun.

Yes, Anna did have a heart cath. The results are only good for 6 months. If you are not listed in that time then you will have to get another one. You are not sedated (Anna said to be sure to tell you that!). It goes through the femorall vein (in the groin). She said it hurt later but really hurt the following few days. We were lucky(?) that she was able to have it done here in NE instead of in CA where her eval. was. There is no way we would have been able to get on a plane and fly home the next day. She was achy for a week and still sore two weeks later. But they said that that was not the norm. Anna weighs about 102/103, 5'5". So you get an idea of her body size. Oh I forgot, and they can not use your port if you have one. You have to lay flat for 6hrs, not even to lift your head. She did get a kick out of the fact that the tech had to feed her because she kept spilling on herself trying to eat because even though you weren't sedated you had to fast before the procedure.

Anna also wanted me to tell ya'll that she also had a echo w/bubble study (inject saline and look to see how your heart reacts) No at our hosp. could tell us what the bubble study was. She also had an EKG.

Lisa, i have so much to say but I've got to get going. I'll be sure to check in when we get back to Texas. I'd sure like to know where your daughter got her tx. So scary all the things.
 
L

Liza

New member
Hi Kathy, Anna informed me that I didn't answer your question about the heart cath. We are washing clothes watching GH packing up some more of her stuff and moving her dishes to her room so my husband will pack them up when he comes to pack up her room in the next few weeks. I don't want him to say, "oh just leave it." Then I'll have to buy it all over again when it comes time for her to move into another apartment. We are expecting horrible weather on our drive back so we are going to get a head start later this afternoon. Oklahoma is expecting more snowy ice. UGH! I'm sorry your husbands visit ended up being a bust. The flu is no fun.

Yes, Anna did have a heart cath. The results are only good for 6 months. If you are not listed in that time then you will have to get another one. You are not sedated (Anna said to be sure to tell you that!). It goes through the femorall vein (in the groin). She said it hurt later but really hurt the following few days. We were lucky(?) that she was able to have it done here in NE instead of in CA where her eval. was. There is no way we would have been able to get on a plane and fly home the next day. She was achy for a week and still sore two weeks later. But they said that that was not the norm. Anna weighs about 102/103, 5'5". So you get an idea of her body size. Oh I forgot, and they can not use your port if you have one. You have to lay flat for 6hrs, not even to lift your head. She did get a kick out of the fact that the tech had to feed her because she kept spilling on herself trying to eat because even though you weren't sedated you had to fast before the procedure.

Anna also wanted me to tell ya'll that she also had a echo w/bubble study (inject saline and look to see how your heart reacts) No at our hosp. could tell us what the bubble study was. She also had an EKG.

Lisa, i have so much to say but I've got to get going. I'll be sure to check in when we get back to Texas. I'd sure like to know where your daughter got her tx. So scary all the things.
 
L

Liza

New member
Hi Kathy, Anna informed me that I didn't answer your question about the heart cath. We are washing clothes watching GH packing up some more of her stuff and moving her dishes to her room so my husband will pack them up when he comes to pack up her room in the next few weeks. I don't want him to say, "oh just leave it." Then I'll have to buy it all over again when it comes time for her to move into another apartment. We are expecting horrible weather on our drive back so we are going to get a head start later this afternoon. Oklahoma is expecting more snowy ice. UGH! I'm sorry your husbands visit ended up being a bust. The flu is no fun.

Yes, Anna did have a heart cath. The results are only good for 6 months. If you are not listed in that time then you will have to get another one. You are not sedated (Anna said to be sure to tell you that!). It goes through the femorall vein (in the groin). She said it hurt later but really hurt the following few days. We were lucky(?) that she was able to have it done here in NE instead of in CA where her eval. was. There is no way we would have been able to get on a plane and fly home the next day. She was achy for a week and still sore two weeks later. But they said that that was not the norm. Anna weighs about 102/103, 5'5". So you get an idea of her body size. Oh I forgot, and they can not use your port if you have one. You have to lay flat for 6hrs, not even to lift your head. She did get a kick out of the fact that the tech had to feed her because she kept spilling on herself trying to eat because even though you weren't sedated you had to fast before the procedure.

Anna also wanted me to tell ya'll that she also had a echo w/bubble study (inject saline and look to see how your heart reacts) No at our hosp. could tell us what the bubble study was. She also had an EKG.

Lisa, i have so much to say but I've got to get going. I'll be sure to check in when we get back to Texas. I'd sure like to know where your daughter got her tx. So scary all the things.
 
M

madisonsmom

New member
Hi all,
Have't been on for a while, Liza, tell Anna thanks for the up date reminder, We are still waiting... Julie, Maddy's MD, told her on thursday that it was going to take a long time to get a cover letter ready to send along w/ her records. She is afraid to push it. The good news is she made it back up to 40 with her PFTs. Like you, I'm glad but not sure this is the best for her. She's been off IV antibx for 3 days now and is already getting periods of spastic coughing.I wonder how long she will make it 'till the next round. She is still off 02 during the day.

The reason I've been tied up is that my husband's sister was found dead in her home on thurs, very unexpected. He has family all over the U.S. and we have been the primary spokes people. We will go to Greenbay, WI tom to finish the funeral plans and have it on tuesday. It's a mess and my husband is not doing well, as you can imagine. She was 48 and healthy.<img src="i/expressions/brokenheart.gif" border="0">

So, Kiely, I know they can't use the port or picc for a cath as they need to access both the vein and artery. The lines they use are pretty big, that why you get alot of pain and bruising after. Liza,I think the bubble study might be a study where they just check pulmonary artery pressure, which would tell them if she's having any high pressures in her lungs which would effect her heart. It's still a test where they put a catheter in the subclavian vein and feed it to the heart, but not as bad as the catth. I'm just guessing as I've never heard it called a bubble study
but they do use a small balloon at the end of the cath, which could be a "bubble".

Well hope Anna is feeling better... how high did her pfts ever get with this last round? Did you fly home or drive?

Maddy is taking advantage of feeling a little better and has not taken a nap during the day for aweek!! She has been walking in the mall alittle too. Last night she and her boyfriend went out looking for a movie,"Wag the Dog" for Bert's statisics class. She said she would have been okay except they had o go to 3 different places and the air temp is in the hi 20's. Yesturday was Eric's( my husband) birthday and she went to Barnes and Nobel to get him a book. Sounds so silly to mention this stuff, but I'm always happy if she can do a few normal things.
She said she would give me her my space information. she hasn't yet, but I'll get it.She goes to university of wisconsin, her email address for school is mlwright@uwm.edu

Kiely ,Im still jealous that it's summer there, have you been for anay more walks on the beach? Hope the cipro's still working for you. That issue with you and Anna having problems with the tobra, hope it's not too bad. Maddy has had her kidney function effected at times from it. You can get too high of a blood concentration. One of the symptoms is the ringing in the ears. I always tell maddy to drink alot of water when she's on it 'cause the last thing you want is to get dehydrated while on the tobra as that can lead to toxic #'s.

well better go,I have to go into work to prepare for my away time.
take care
kathy
ps thank you shammi, for "good luck"<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

madisonsmom

New member
Hi all,
Have't been on for a while, Liza, tell Anna thanks for the up date reminder, We are still waiting... Julie, Maddy's MD, told her on thursday that it was going to take a long time to get a cover letter ready to send along w/ her records. She is afraid to push it. The good news is she made it back up to 40 with her PFTs. Like you, I'm glad but not sure this is the best for her. She's been off IV antibx for 3 days now and is already getting periods of spastic coughing.I wonder how long she will make it 'till the next round. She is still off 02 during the day.

The reason I've been tied up is that my husband's sister was found dead in her home on thurs, very unexpected. He has family all over the U.S. and we have been the primary spokes people. We will go to Greenbay, WI tom to finish the funeral plans and have it on tuesday. It's a mess and my husband is not doing well, as you can imagine. She was 48 and healthy.<img src="i/expressions/brokenheart.gif" border="0">

So, Kiely, I know they can't use the port or picc for a cath as they need to access both the vein and artery. The lines they use are pretty big, that why you get alot of pain and bruising after. Liza,I think the bubble study might be a study where they just check pulmonary artery pressure, which would tell them if she's having any high pressures in her lungs which would effect her heart. It's still a test where they put a catheter in the subclavian vein and feed it to the heart, but not as bad as the catth. I'm just guessing as I've never heard it called a bubble study
but they do use a small balloon at the end of the cath, which could be a "bubble".

Well hope Anna is feeling better... how high did her pfts ever get with this last round? Did you fly home or drive?

Maddy is taking advantage of feeling a little better and has not taken a nap during the day for aweek!! She has been walking in the mall alittle too. Last night she and her boyfriend went out looking for a movie,"Wag the Dog" for Bert's statisics class. She said she would have been okay except they had o go to 3 different places and the air temp is in the hi 20's. Yesturday was Eric's( my husband) birthday and she went to Barnes and Nobel to get him a book. Sounds so silly to mention this stuff, but I'm always happy if she can do a few normal things.
She said she would give me her my space information. she hasn't yet, but I'll get it.She goes to university of wisconsin, her email address for school is mlwright@uwm.edu

Kiely ,Im still jealous that it's summer there, have you been for anay more walks on the beach? Hope the cipro's still working for you. That issue with you and Anna having problems with the tobra, hope it's not too bad. Maddy has had her kidney function effected at times from it. You can get too high of a blood concentration. One of the symptoms is the ringing in the ears. I always tell maddy to drink alot of water when she's on it 'cause the last thing you want is to get dehydrated while on the tobra as that can lead to toxic #'s.

well better go,I have to go into work to prepare for my away time.
take care
kathy
ps thank you shammi, for "good luck"<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

madisonsmom

New member
Hi all,
Have't been on for a while, Liza, tell Anna thanks for the up date reminder, We are still waiting... Julie, Maddy's MD, told her on thursday that it was going to take a long time to get a cover letter ready to send along w/ her records. She is afraid to push it. The good news is she made it back up to 40 with her PFTs. Like you, I'm glad but not sure this is the best for her. She's been off IV antibx for 3 days now and is already getting periods of spastic coughing.I wonder how long she will make it 'till the next round. She is still off 02 during the day.

The reason I've been tied up is that my husband's sister was found dead in her home on thurs, very unexpected. He has family all over the U.S. and we have been the primary spokes people. We will go to Greenbay, WI tom to finish the funeral plans and have it on tuesday. It's a mess and my husband is not doing well, as you can imagine. She was 48 and healthy.<img src="i/expressions/brokenheart.gif" border="0">

So, Kiely, I know they can't use the port or picc for a cath as they need to access both the vein and artery. The lines they use are pretty big, that why you get alot of pain and bruising after. Liza,I think the bubble study might be a study where they just check pulmonary artery pressure, which would tell them if she's having any high pressures in her lungs which would effect her heart. It's still a test where they put a catheter in the subclavian vein and feed it to the heart, but not as bad as the catth. I'm just guessing as I've never heard it called a bubble study
but they do use a small balloon at the end of the cath, which could be a "bubble".

Well hope Anna is feeling better... how high did her pfts ever get with this last round? Did you fly home or drive?

Maddy is taking advantage of feeling a little better and has not taken a nap during the day for aweek!! She has been walking in the mall alittle too. Last night she and her boyfriend went out looking for a movie,"Wag the Dog" for Bert's statisics class. She said she would have been okay except they had o go to 3 different places and the air temp is in the hi 20's. Yesturday was Eric's( my husband) birthday and she went to Barnes and Nobel to get him a book. Sounds so silly to mention this stuff, but I'm always happy if she can do a few normal things.
She said she would give me her my space information. she hasn't yet, but I'll get it.She goes to university of wisconsin, her email address for school is mlwright@uwm.edu

Kiely ,Im still jealous that it's summer there, have you been for anay more walks on the beach? Hope the cipro's still working for you. That issue with you and Anna having problems with the tobra, hope it's not too bad. Maddy has had her kidney function effected at times from it. You can get too high of a blood concentration. One of the symptoms is the ringing in the ears. I always tell maddy to drink alot of water when she's on it 'cause the last thing you want is to get dehydrated while on the tobra as that can lead to toxic #'s.

well better go,I have to go into work to prepare for my away time.
take care
kathy
ps thank you shammi, for "good luck"<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kybert

New member
oooooooooh you meant for the heart cath. i thought you meant when they transplant you. silly me!

no more walks on the beach just yet. im off the cipro but im still doing ok. amazing! i had balance tests done last week regarding the tob. i dont know how those turned out but the tests were rather unpleasant. they blow hot and cold air onto your eardrum. hurts like hell and made me panic rofl.
 
K

kybert

New member
oooooooooh you meant for the heart cath. i thought you meant when they transplant you. silly me!

no more walks on the beach just yet. im off the cipro but im still doing ok. amazing! i had balance tests done last week regarding the tob. i dont know how those turned out but the tests were rather unpleasant. they blow hot and cold air onto your eardrum. hurts like hell and made me panic rofl.
 
K

kybert

New member
oooooooooh you meant for the heart cath. i thought you meant when they transplant you. silly me!

no more walks on the beach just yet. im off the cipro but im still doing ok. amazing! i had balance tests done last week regarding the tob. i dont know how those turned out but the tests were rather unpleasant. they blow hot and cold air onto your eardrum. hurts like hell and made me panic rofl.
 
L

Liza

New member
Hi ya'll. Kathy, I am so sorry to hear about your sister-in-law.

I am glad to hear that Maddy is feeling good and getting a chance to get out of the house if only for short trips here or there. The short trips may sound silly to the avg. person but I so know what you mean. They are a big deal.

We drove back from NE. Turned out the horrible weather they were expecting in KS and OK wasn't like predicted. We ended up leaving around 5:45pm Fri. evening to try and get ahead of the snow and ice. We drove just short of Wichita, KS. It had started snowing in the early AM but snow is nothing in a place that is used to getting snow. It's the ice that was expected in OK that I was concerned about. Turned out to only be rain. We made it home around 3pm on Sat. afternoon.

Anna is not feeling well. We have an appt. scheduled at Stanford for next Thurs. Anna doesn't have any energy and hasn't been eating too much. She gets a coughing fit and then what she ate is no longer with her. I'm sure you get the picture. Her o2sats are still in the 90's so she's still only using oxygen at nite. Her pfts. were 28 the day before they let her come home. Everything makes her nauseous. Right now she is supposed to be doing Gent. but what do I do if it makes her nauseous? She has Zofran but it's not doing a whole lot for her. She says her back hurts. I think from being bent over, she's not been sitting up a whole lot. I told her that today we needed to try and do some exercise. She hates exercises. I told her even if it's just laying on the floor and doing leg lifts and lifting some small weights and trying to stretch her back, that maybe she's all tensed up from not sitting up straight very much. So we'll see how that goes. She has her moments where she will try and play with the dogs a bit. We have small dogs, a dachshund and a chihuahua. She's not even felt like getting on her computer or have her cell phone nearby.

I surely wish they had said yes when we were there in Nov. so that we could be in CA now instead of trying to get all this together while she is feeling bad. At this point we are fairly sure that they will suggest her staying there. My husband is taking her this time. I suppose we will trade over the weekend, me flying out there and then him flying back. We had planned on driving but I don't think that's going to happen. It would take me at least two days and trying to do it with her not feeling good. Too stressful I think. Thank goodness for the couple that has opened up their home to us. We will be within a 30 min. drive of the hospital and they have generously offered us their spare car as well. In the end, this is what a lifetime of military life has given us, friends, even newly made ones, that live all over the country that will help any way they can.

Kylie, I am so glad that you are still feeling well. It makes me so happy to hear that you are still UP.

I'll be sure to give Anna, Maddy's info. when she is feeling up to getting on her comp. I think she would like to talk to someone going through the same stuff as her. I know that she is looking forward to getting to the suppport group they have at Stanford.

This is all moving so quickly, and we are all a bit scared. But she can't continue this way. We can only hope that it will all go smoothly and that by this time next year she will be back in school and feeling well.

I'd better get going. Thanks so much you guys for being here. It's just what I needed.
 
L

Liza

New member
Hi ya'll. Kathy, I am so sorry to hear about your sister-in-law.

I am glad to hear that Maddy is feeling good and getting a chance to get out of the house if only for short trips here or there. The short trips may sound silly to the avg. person but I so know what you mean. They are a big deal.

We drove back from NE. Turned out the horrible weather they were expecting in KS and OK wasn't like predicted. We ended up leaving around 5:45pm Fri. evening to try and get ahead of the snow and ice. We drove just short of Wichita, KS. It had started snowing in the early AM but snow is nothing in a place that is used to getting snow. It's the ice that was expected in OK that I was concerned about. Turned out to only be rain. We made it home around 3pm on Sat. afternoon.

Anna is not feeling well. We have an appt. scheduled at Stanford for next Thurs. Anna doesn't have any energy and hasn't been eating too much. She gets a coughing fit and then what she ate is no longer with her. I'm sure you get the picture. Her o2sats are still in the 90's so she's still only using oxygen at nite. Her pfts. were 28 the day before they let her come home. Everything makes her nauseous. Right now she is supposed to be doing Gent. but what do I do if it makes her nauseous? She has Zofran but it's not doing a whole lot for her. She says her back hurts. I think from being bent over, she's not been sitting up a whole lot. I told her that today we needed to try and do some exercise. She hates exercises. I told her even if it's just laying on the floor and doing leg lifts and lifting some small weights and trying to stretch her back, that maybe she's all tensed up from not sitting up straight very much. So we'll see how that goes. She has her moments where she will try and play with the dogs a bit. We have small dogs, a dachshund and a chihuahua. She's not even felt like getting on her computer or have her cell phone nearby.

I surely wish they had said yes when we were there in Nov. so that we could be in CA now instead of trying to get all this together while she is feeling bad. At this point we are fairly sure that they will suggest her staying there. My husband is taking her this time. I suppose we will trade over the weekend, me flying out there and then him flying back. We had planned on driving but I don't think that's going to happen. It would take me at least two days and trying to do it with her not feeling good. Too stressful I think. Thank goodness for the couple that has opened up their home to us. We will be within a 30 min. drive of the hospital and they have generously offered us their spare car as well. In the end, this is what a lifetime of military life has given us, friends, even newly made ones, that live all over the country that will help any way they can.

Kylie, I am so glad that you are still feeling well. It makes me so happy to hear that you are still UP.

I'll be sure to give Anna, Maddy's info. when she is feeling up to getting on her comp. I think she would like to talk to someone going through the same stuff as her. I know that she is looking forward to getting to the suppport group they have at Stanford.

This is all moving so quickly, and we are all a bit scared. But she can't continue this way. We can only hope that it will all go smoothly and that by this time next year she will be back in school and feeling well.

I'd better get going. Thanks so much you guys for being here. It's just what I needed.
 
L

Liza

New member
Hi ya'll. Kathy, I am so sorry to hear about your sister-in-law.

I am glad to hear that Maddy is feeling good and getting a chance to get out of the house if only for short trips here or there. The short trips may sound silly to the avg. person but I so know what you mean. They are a big deal.

We drove back from NE. Turned out the horrible weather they were expecting in KS and OK wasn't like predicted. We ended up leaving around 5:45pm Fri. evening to try and get ahead of the snow and ice. We drove just short of Wichita, KS. It had started snowing in the early AM but snow is nothing in a place that is used to getting snow. It's the ice that was expected in OK that I was concerned about. Turned out to only be rain. We made it home around 3pm on Sat. afternoon.

Anna is not feeling well. We have an appt. scheduled at Stanford for next Thurs. Anna doesn't have any energy and hasn't been eating too much. She gets a coughing fit and then what she ate is no longer with her. I'm sure you get the picture. Her o2sats are still in the 90's so she's still only using oxygen at nite. Her pfts. were 28 the day before they let her come home. Everything makes her nauseous. Right now she is supposed to be doing Gent. but what do I do if it makes her nauseous? She has Zofran but it's not doing a whole lot for her. She says her back hurts. I think from being bent over, she's not been sitting up a whole lot. I told her that today we needed to try and do some exercise. She hates exercises. I told her even if it's just laying on the floor and doing leg lifts and lifting some small weights and trying to stretch her back, that maybe she's all tensed up from not sitting up straight very much. So we'll see how that goes. She has her moments where she will try and play with the dogs a bit. We have small dogs, a dachshund and a chihuahua. She's not even felt like getting on her computer or have her cell phone nearby.

I surely wish they had said yes when we were there in Nov. so that we could be in CA now instead of trying to get all this together while she is feeling bad. At this point we are fairly sure that they will suggest her staying there. My husband is taking her this time. I suppose we will trade over the weekend, me flying out there and then him flying back. We had planned on driving but I don't think that's going to happen. It would take me at least two days and trying to do it with her not feeling good. Too stressful I think. Thank goodness for the couple that has opened up their home to us. We will be within a 30 min. drive of the hospital and they have generously offered us their spare car as well. In the end, this is what a lifetime of military life has given us, friends, even newly made ones, that live all over the country that will help any way they can.

Kylie, I am so glad that you are still feeling well. It makes me so happy to hear that you are still UP.

I'll be sure to give Anna, Maddy's info. when she is feeling up to getting on her comp. I think she would like to talk to someone going through the same stuff as her. I know that she is looking forward to getting to the suppport group they have at Stanford.

This is all moving so quickly, and we are all a bit scared. But she can't continue this way. We can only hope that it will all go smoothly and that by this time next year she will be back in school and feeling well.

I'd better get going. Thanks so much you guys for being here. It's just what I needed.
 
M

madisonsmom

New member
Hi,
Liza, I'm sorry Anna didn't feel any better after the hospital. I know you must be worried. I hope she tolerates the trip, I'm glad the date was moved ahead so they can evaluate her sooner. I hope you can stay there and maybe they can help tune her up with some new ideas. I know what you mean about the coughing and losing her food. Does she have G tube? Her nutrition is so important. When they can't eat, it's not good. Has Anna ever been on Megace? Maddy has had it and we both can't believe how well it works She goes from no apetite to eating alot any the nausea seems to go away also.. Another thing that works when Maddy has no apetite is taking miralax to clean out. Hope I'm not just rambleing with usless information, but I feel your worry and have been there with Maddy.
Maddy has actually had lots of back issues, partly do to breaking ribs and tearing intercostal muscles from coughing so hard and the posture issue doesn't help. She has taken oxycodone for the torn muscles and believe it or not the drug some how seems to loosen her cough. At first we thought her sats just improved from the pain relief but she's not splinting(from the pain) any more, and her cough gets tighter when the drug wears off and her sats go down. The MDs even noted the changes. They were nervous about perscribing a narcotic but it's a low dose and they watched her sats go up and down with the meds. We consulted a pain managment specialst and he said the the narcotic affect could be producing some broncho dialation, but he didn't have any reseach stating that low dose oxycodone would produce the effect we were seeing with Maddy. So she's been on a low dose for several years. They have even bumped the dose up in the hospital, but she always go back down when she comes home. Maybe worth checking into for you, just a suggestion.
Please let me know how everything goes witht he evaluation and I wish you the best
 
M

madisonsmom

New member
Hi,
Liza, I'm sorry Anna didn't feel any better after the hospital. I know you must be worried. I hope she tolerates the trip, I'm glad the date was moved ahead so they can evaluate her sooner. I hope you can stay there and maybe they can help tune her up with some new ideas. I know what you mean about the coughing and losing her food. Does she have G tube? Her nutrition is so important. When they can't eat, it's not good. Has Anna ever been on Megace? Maddy has had it and we both can't believe how well it works She goes from no apetite to eating alot any the nausea seems to go away also.. Another thing that works when Maddy has no apetite is taking miralax to clean out. Hope I'm not just rambleing with usless information, but I feel your worry and have been there with Maddy.
Maddy has actually had lots of back issues, partly do to breaking ribs and tearing intercostal muscles from coughing so hard and the posture issue doesn't help. She has taken oxycodone for the torn muscles and believe it or not the drug some how seems to loosen her cough. At first we thought her sats just improved from the pain relief but she's not splinting(from the pain) any more, and her cough gets tighter when the drug wears off and her sats go down. The MDs even noted the changes. They were nervous about perscribing a narcotic but it's a low dose and they watched her sats go up and down with the meds. We consulted a pain managment specialst and he said the the narcotic affect could be producing some broncho dialation, but he didn't have any reseach stating that low dose oxycodone would produce the effect we were seeing with Maddy. So she's been on a low dose for several years. They have even bumped the dose up in the hospital, but she always go back down when she comes home. Maybe worth checking into for you, just a suggestion.
Please let me know how everything goes witht he evaluation and I wish you the best
 
You must log in or register to reply here.
Top