May I ask if Shira has ever had a meal through her mouth in her entire young life? Does Shira feels hunger and thrist or do you feed her at regular interval?
Do you have a nurse who sometimes helps you with her?
Personally, I think you do a fantastic team work with Shira.
Hello! That was a different way to remove the air from the stomach. I have SMA type 2 and also have a Mic key button, but when we remove the air of my stomach I must lay on my back and then we just open the "clamp" and let the air out. If I lay on my right or left side, or sits up in my chair, no air comes out, just food.
@Emmixen Thanks for posting. There are several ways to vent a line. Some people need to be on a continuous vent while others like you and I can manually vent. Shira is not very gaseous so this way works quite well but sometimes I will put her on her back to vent also.
@Emmixen Continuos vent means the Mickey Button line is attached to a 60ml syringe without the plunger and is hung above the patient so the line is always open. Shira is doing great for someone with a life threatening disease and who's care is intensive to say the least. Thank you for asking. How are you doing?
@Emmixen I'm not offended at all. Many of these children die young and its hard to know sometimes who is alive and who is deceased. I appreciate you asking!
Ok, good.. Yes I know. I live with SMA too, but type 2. And I'm not so good in english, you see. :P I'm from Sweden. It would be nice to have mail contact with you if you would like.
May I ask if Shira has ever had a meal through her mouth in her entire young life? Does Shira feels hunger and thrist or do you feed her at regular interval?
Do you have a nurse who sometimes helps you with her?
Personally, I think you do a fantastic team work with Shira.
PauleQueenie 1 year ago
thanks so much for posting this video on venting!!
murphyl6706 1 year ago
Hello! That was a different way to remove the air from the stomach. I have SMA type 2 and also have a Mic key button, but when we remove the air of my stomach I must lay on my back and then we just open the "clamp" and let the air out. If I lay on my right or left side, or sits up in my chair, no air comes out, just food.
Emmixen 1 year ago
@Emmixen Thanks for posting. There are several ways to vent a line. Some people need to be on a continuous vent while others like you and I can manually vent. Shira is not very gaseous so this way works quite well but sometimes I will put her on her back to vent also.
Shira2 1 year ago
Okay, I understand. How does continuous vent works? I've never heard of that.
And how is Shira now? Is she fine?
Emmixen 1 year ago
@Emmixen Continuos vent means the Mickey Button line is attached to a 60ml syringe without the plunger and is hung above the patient so the line is always open. Shira is doing great for someone with a life threatening disease and who's care is intensive to say the least. Thank you for asking. How are you doing?
Shira2 1 year ago
Ah, okay, now I know what continuos vent is. I hope you did not take offense because I asked how Shira is now. I'm fine.
Emmixen 1 year ago
@Emmixen I'm not offended at all. Many of these children die young and its hard to know sometimes who is alive and who is deceased. I appreciate you asking!
Shira2 1 year ago
Ok, good.. Yes I know. I live with SMA too, but type 2. And I'm not so good in english, you see. :P I'm from Sweden. It would be nice to have mail contact with you if you would like.
Emmixen 1 year ago
Aww Bless Can She Feel That? x
Blabbabsis 2 years ago