We don't have the parts, we will have to order them

[jimiv]

Well Parker woke me up at 2:30 this morning to tell me the top of his mickey button had broken off and he was leaking "everywhere". We did not have a button kit at home so off we go to the ER in a town of 8,000 people. They don't have one that small and the Doctor who put in the button and has a spare for an occasion like this is out of town. They tape the hole closed and send us home. This is the second time I have had to educate a community ER staff about the care for CF and tube feedings.
At a summer camp in East Texas, Parker became dehydrated and lost a bunch of weight. The short version of that hospital stay was the doctor writing an order that the nurses should follow my medication regimen for Parker and use the meds I brought with me. In addition to that I had to buy a new extension set to his tube feedings after two days because the nurses could not find the one he came with and their purchasing department could not locate one. They took a day and a half to tell me that while I only needed 2 hours to locate a set, buy it, and bring it back to the hospital to start a feed.
Apparently in addition to having all of his medical information with me, I should start carrying a box with all the spare parts I may need. Parker was a real champ and kept his cool about the whole event. Sometimes ER visits can bring out his inner "drama". I forget, how long should these buttons last before needing to be replaced? I know cleaning in necessary daily and such but how long until they wear out???

 

[jimiv]

Well Parker woke me up at 2:30 this morning to tell me the top of his mickey button had broken off and he was leaking "everywhere". We did not have a button kit at home so off we go to the ER in a town of 8,000 people. They don't have one that small and the Doctor who put in the button and has a spare for an occasion like this is out of town. They tape the hole closed and send us home. This is the second time I have had to educate a community ER staff about the care for CF and tube feedings.
At a summer camp in East Texas, Parker became dehydrated and lost a bunch of weight. The short version of that hospital stay was the doctor writing an order that the nurses should follow my medication regimen for Parker and use the meds I brought with me. In addition to that I had to buy a new extension set to his tube feedings after two days because the nurses could not find the one he came with and their purchasing department could not locate one. They took a day and a half to tell me that while I only needed 2 hours to locate a set, buy it, and bring it back to the hospital to start a feed.
Apparently in addition to having all of his medical information with me, I should start carrying a box with all the spare parts I may need. Parker was a real champ and kept his cool about the whole event. Sometimes ER visits can bring out his inner "drama". I forget, how long should these buttons last before needing to be replaced? I know cleaning in necessary daily and such but how long until they wear out???

 

[jimiv]

Well Parker woke me up at 2:30 this morning to tell me the top of his mickey button had broken off and he was leaking "everywhere". We did not have a button kit at home so off we go to the ER in a town of 8,000 people. They don't have one that small and the Doctor who put in the button and has a spare for an occasion like this is out of town. They tape the hole closed and send us home. This is the second time I have had to educate a community ER staff about the care for CF and tube feedings.
At a summer camp in East Texas, Parker became dehydrated and lost a bunch of weight. The short version of that hospital stay was the doctor writing an order that the nurses should follow my medication regimen for Parker and use the meds I brought with me. In addition to that I had to buy a new extension set to his tube feedings after two days because the nurses could not find the one he came with and their purchasing department could not locate one. They took a day and a half to tell me that while I only needed 2 hours to locate a set, buy it, and bring it back to the hospital to start a feed.
Apparently in addition to having all of his medical information with me, I should start carrying a box with all the spare parts I may need. Parker was a real champ and kept his cool about the whole event. Sometimes ER visits can bring out his inner "drama". I forget, how long should these buttons last before needing to be replaced? I know cleaning in necessary daily and such but how long until they wear out???

 

[jimiv]

Well Parker woke me up at 2:30 this morning to tell me the top of his mickey button had broken off and he was leaking "everywhere". We did not have a button kit at home so off we go to the ER in a town of 8,000 people. They don't have one that small and the Doctor who put in the button and has a spare for an occasion like this is out of town. They tape the hole closed and send us home. This is the second time I have had to educate a community ER staff about the care for CF and tube feedings.
At a summer camp in East Texas, Parker became dehydrated and lost a bunch of weight. The short version of that hospital stay was the doctor writing an order that the nurses should follow my medication regimen for Parker and use the meds I brought with me. In addition to that I had to buy a new extension set to his tube feedings after two days because the nurses could not find the one he came with and their purchasing department could not locate one. They took a day and a half to tell me that while I only needed 2 hours to locate a set, buy it, and bring it back to the hospital to start a feed.
Apparently in addition to having all of his medical information with me, I should start carrying a box with all the spare parts I may need. Parker was a real champ and kept his cool about the whole event. Sometimes ER visits can bring out his inner "drama". I forget, how long should these buttons last before needing to be replaced? I know cleaning in necessary daily and such but how long until they wear out???

 

[jimiv]

Well Parker woke me up at 2:30 this morning to tell me the top of his mickey button had broken off and he was leaking "everywhere". We did not have a button kit at home so off we go to the ER in a town of 8,000 people. They don't have one that small and the Doctor who put in the button and has a spare for an occasion like this is out of town. They tape the hole closed and send us home. This is the second time I have had to educate a community ER staff about the care for CF and tube feedings.
<br /> At a summer camp in East Texas, Parker became dehydrated and lost a bunch of weight. The short version of that hospital stay was the doctor writing an order that the nurses should follow my medication regimen for Parker and use the meds I brought with me. In addition to that I had to buy a new extension set to his tube feedings after two days because the nurses could not find the one he came with and their purchasing department could not locate one. They took a day and a half to tell me that while I only needed 2 hours to locate a set, buy it, and bring it back to the hospital to start a feed.
<br /> Apparently in addition to having all of his medical information with me, I should start carrying a box with all the spare parts I may need. Parker was a real champ and kept his cool about the whole event. Sometimes ER visits can bring out his inner "drama". I forget, how long should these buttons last before needing to be replaced? I know cleaning in necessary daily and such but how long until they wear out???

 

[Mommafirst]

Oh gosh, Jim, what a nightmare. Buttons should last 3-6 months before replacement, but your home health company should be able to get you an extra for these types of emergencies. I have an emergency kit I keep in my car. It has surgical lube, a foley catheter, tape and a syringe with sterile water in it. If ever we have a button problem, I put in the foley cath to hold the stoma open so that I can either get home and get a new button or get to the ER.

Its really unfortunate that your ER is so ill equipped. And the camp thing is super frustrating.

 

[Mommafirst]

Oh gosh, Jim, what a nightmare. Buttons should last 3-6 months before replacement, but your home health company should be able to get you an extra for these types of emergencies. I have an emergency kit I keep in my car. It has surgical lube, a foley catheter, tape and a syringe with sterile water in it. If ever we have a button problem, I put in the foley cath to hold the stoma open so that I can either get home and get a new button or get to the ER.

Its really unfortunate that your ER is so ill equipped. And the camp thing is super frustrating.

 

[Mommafirst]

Oh gosh, Jim, what a nightmare. Buttons should last 3-6 months before replacement, but your home health company should be able to get you an extra for these types of emergencies. I have an emergency kit I keep in my car. It has surgical lube, a foley catheter, tape and a syringe with sterile water in it. If ever we have a button problem, I put in the foley cath to hold the stoma open so that I can either get home and get a new button or get to the ER.

Its really unfortunate that your ER is so ill equipped. And the camp thing is super frustrating.

 

[Mommafirst]

Oh gosh, Jim, what a nightmare. Buttons should last 3-6 months before replacement, but your home health company should be able to get you an extra for these types of emergencies. I have an emergency kit I keep in my car. It has surgical lube, a foley catheter, tape and a syringe with sterile water in it. If ever we have a button problem, I put in the foley cath to hold the stoma open so that I can either get home and get a new button or get to the ER.

Its really unfortunate that your ER is so ill equipped. And the camp thing is super frustrating.

 

[Mommafirst]

Oh gosh, Jim, what a nightmare. Buttons should last 3-6 months before replacement, but your home health company should be able to get you an extra for these types of emergencies. I have an emergency kit I keep in my car. It has surgical lube, a foley catheter, tape and a syringe with sterile water in it. If ever we have a button problem, I put in the foley cath to hold the stoma open so that I can either get home and get a new button or get to the ER.
<br />
<br />Its really unfortunate that your ER is so ill equipped. And the camp thing is super frustrating.

 

[jimiv]

This case was not a complete detachmet although I have been worried about that happening. Last night the plastic part on the top of the button where the extension kit is plugged in is what broke. What was really messy was that we had just about finished a 1000ml tube feeding so there was plenty of stuff to pour out. I really worry about how much of this is going to continue because now that Parker is almost 12, he is starting to get upset about the hassle of taking pills and tube feedings and vests and nebulizers x2 and enzymes and sounding like he smokes a pack a day........grrr. Not to mention that we are both really sleepy today.

 

[jimiv]

This case was not a complete detachmet although I have been worried about that happening. Last night the plastic part on the top of the button where the extension kit is plugged in is what broke. What was really messy was that we had just about finished a 1000ml tube feeding so there was plenty of stuff to pour out. I really worry about how much of this is going to continue because now that Parker is almost 12, he is starting to get upset about the hassle of taking pills and tube feedings and vests and nebulizers x2 and enzymes and sounding like he smokes a pack a day........grrr. Not to mention that we are both really sleepy today.

 

[jimiv]

This case was not a complete detachmet although I have been worried about that happening. Last night the plastic part on the top of the button where the extension kit is plugged in is what broke. What was really messy was that we had just about finished a 1000ml tube feeding so there was plenty of stuff to pour out. I really worry about how much of this is going to continue because now that Parker is almost 12, he is starting to get upset about the hassle of taking pills and tube feedings and vests and nebulizers x2 and enzymes and sounding like he smokes a pack a day........grrr. Not to mention that we are both really sleepy today.

 

[jimiv]

This case was not a complete detachmet although I have been worried about that happening. Last night the plastic part on the top of the button where the extension kit is plugged in is what broke. What was really messy was that we had just about finished a 1000ml tube feeding so there was plenty of stuff to pour out. I really worry about how much of this is going to continue because now that Parker is almost 12, he is starting to get upset about the hassle of taking pills and tube feedings and vests and nebulizers x2 and enzymes and sounding like he smokes a pack a day........grrr. Not to mention that we are both really sleepy today.

 

[jimiv]

This case was not a complete detachmet although I have been worried about that happening. Last night the plastic part on the top of the button where the extension kit is plugged in is what broke. What was really messy was that we had just about finished a 1000ml tube feeding so there was plenty of stuff to pour out. I really worry about how much of this is going to continue because now that Parker is almost 12, he is starting to get upset about the hassle of taking pills and tube feedings and vests and nebulizers x2 and enzymes and sounding like he smokes a pack a day........grrr. Not to mention that we are both really sleepy today.

 

[Buckeye]

We change the g-tube about every six months.Was it the top plug that fits into the hole when there is not an extension set attached? If that is the area that was leaking it might have been time for a new mickey button anyhow. My son's is pretty much a one way valve unless it is getting close to the time to change it. You could leave the thing "open" all day long and nothing would come back out of it.We also have a second set of everything in case of emergency. I used to keep it in the car, but now it's been moved to the closet since we haven't had a Mickey emergency in a few years.It must be hard on your son to have gotten the g-tube later in life. With my son it's just a normal part of him, but I can see what a hassle it might be to the kids if they haven't grown up with it.

 

[Buckeye]

We change the g-tube about every six months.Was it the top plug that fits into the hole when there is not an extension set attached? If that is the area that was leaking it might have been time for a new mickey button anyhow. My son's is pretty much a one way valve unless it is getting close to the time to change it. You could leave the thing "open" all day long and nothing would come back out of it.We also have a second set of everything in case of emergency. I used to keep it in the car, but now it's been moved to the closet since we haven't had a Mickey emergency in a few years.It must be hard on your son to have gotten the g-tube later in life. With my son it's just a normal part of him, but I can see what a hassle it might be to the kids if they haven't grown up with it.

 

[Buckeye]

We change the g-tube about every six months.Was it the top plug that fits into the hole when there is not an extension set attached? If that is the area that was leaking it might have been time for a new mickey button anyhow. My son's is pretty much a one way valve unless it is getting close to the time to change it. You could leave the thing "open" all day long and nothing would come back out of it.We also have a second set of everything in case of emergency. I used to keep it in the car, but now it's been moved to the closet since we haven't had a Mickey emergency in a few years.It must be hard on your son to have gotten the g-tube later in life. With my son it's just a normal part of him, but I can see what a hassle it might be to the kids if they haven't grown up with it.

 

[Buckeye]

We change the g-tube about every six months.Was it the top plug that fits into the hole when there is not an extension set attached? If that is the area that was leaking it might have been time for a new mickey button anyhow. My son's is pretty much a one way valve unless it is getting close to the time to change it. You could leave the thing "open" all day long and nothing would come back out of it.We also have a second set of everything in case of emergency. I used to keep it in the car, but now it's been moved to the closet since we haven't had a Mickey emergency in a few years.It must be hard on your son to have gotten the g-tube later in life. With my son it's just a normal part of him, but I can see what a hassle it might be to the kids if they haven't grown up with it.

 

[Buckeye]

We change the g-tube about every six months.<p>Was it the top plug that fits into the hole when there is not an extension set attached? If that is the area that was leaking it might have been time for a new mickey button anyhow. My son's is pretty much a one way valve unless it is getting close to the time to change it. You could leave the thing "open" all day long and nothing would come back out of it.<p>We also have a second set of everything in case of emergency. I used to keep it in the car, but now it's been moved to the closet since we haven't had a Mickey emergency in a few years.<p>It must be hard on your son to have gotten the g-tube later in life. With my son it's just a normal part of him, but I can see what a hassle it might be to the kids if they haven't grown up with it.