Post by Amy Lombardi on Apr 16, 2009 16:02:59 GMT -5
Subject: Suctioning
Dawn Mizuguchi
Feb 17th, 2009 - 6:03 PM
I was just wondering if I can get some HELP please.....My son Colton is now 7 years old and has Late Infantile Batten's and we found out about the Batten's in June, 2007. Colton has nothing left to lose for he is bed ridden and has had a g-tube for over a year....For the last couple of months I have noticed that he is gagging and coughing a lot for he can't control the salvia in his mouth. The doctor has ordered a machine for me for at home but I have to say that I am really nerves about getting this, I know in my heart that this is the only thing to do at this point....Is there any suggestions on how I should I might be able to get through this yet again new stage of Batten's. Thank you all in advance
Darlene Royalty
Feb 17th, 2009 - 7:03 PM
Dawn, I know what you are going though. When we decided to bring home a suction machine I was so nerves too. We have two girls and lost one in Sept. of 2007. Amber and Sarah both need to be have suctioning. I think you just get used to it. I was afraid I might go down to far, but the girls let me know if I am. Sometimes they throw-up their ensure but I feel at least we have broken up whatever was making them gag. It is just another thing we do as parents. Trail and error. I wish you didn't have to go though this but it can't be helped and if it helps to make our kids feel better than that is what we must do. Good luck and I know you will be fine. You can do this.
Darlene
Lincldad
Feb 18th, 2009 - 4:09 AM
hello, here are some of my thoughts. I've been suctioning for 3+ years.
-I currently use a 10fr catheter whistle tip, no yaunkers(sp). I started with an 8fr and keep 8fr around for when I need to smaller tip. Yaunkers(sp) are for the birds IMO, however we have a fundo. and do not need to suction anything but spit and mucus.
-Clean the bucket on the suction machine daily. Add mouthwash to the bucket after each cleaning. Clean the bucket with vinegar once a week. The smell will be terrible if you don't.
-Get two machines, one stationary and one mobile (12V).
-Eventually my daughter lost most of her gag reflex, it is trial and error as to how deep to go, when the reflex goes that is not an issue. Currently I hit upwards of 20mm, I remember 8mm and 14mm deep for a long time. Going too deep can drag junk up that you don't want, be careful.
-Use suction tips with a Carb (hole), go in with your thumb off the hole, then plug the hole and suction out. You'll learn the "sounds" to listen for.
Hope that helps you
Lincldad (10yr, lincl, F)
Peggy D
Feb 19th, 2009 - 12:32 PM
Hi Dawn,
I can remember how nervous I was too when we had to begin suctioning for Christopher (late infantile). It's a bit of trial and error, but if you start out gently, your child will let you know. The first time you're able to clear him out, you'll feel so much better about it because you'll know that it has really helped him. Confidence will come. The other tip I can give you other than keeping the container clean everyday is to keep a cup of water (preferrably warm) around near the machine. After suctioning, be sure to then suction plain water through the tip and tube to keep them cleared. This helps with keeping the unit clean. Good luck, you'll do fine.
Peggy D
Bonnie
Feb 23rd, 2009 - 3:04 PM
Have you tried any type of medication to help dry up the secterions such as artane or scapolamine(sp?)patches(patches for sea sickness and vomitting).My daughter was on the patches,they did seem to help for a time.They can be purchased at any drug store. As the disease progressed she needed to he suctioned more frequently.It just becomes one of the things that we do without really thinking about it.I used high capacity yuankers.Not the great big blue ones.There are clear ridged ones that are as fine as catheter suction tubes.They come in fine,normal and high capacity.I used these for oral suctioning as she would bite down on the suction catheters and stop then from working.I used 10fr oral catheters when she needed to be deep suctioned.We tried not to do deep suction too often.We had lots of tricks to simulate a cough it was only done as a last resort as we found that it often caused more irritation which resulted in more suctioning.I also used a lot of the foam tooth ettes to clear out the mouth.
Don't be nerves about getting it.If you get it and then choose not to use it that is okay too.I do know of families that have chosen not to do any suctioning at all.We all do what we think is be for our child and you will to.
Dawn Mizuguchi
Feb 17th, 2009 - 6:03 PM
I was just wondering if I can get some HELP please.....My son Colton is now 7 years old and has Late Infantile Batten's and we found out about the Batten's in June, 2007. Colton has nothing left to lose for he is bed ridden and has had a g-tube for over a year....For the last couple of months I have noticed that he is gagging and coughing a lot for he can't control the salvia in his mouth. The doctor has ordered a machine for me for at home but I have to say that I am really nerves about getting this, I know in my heart that this is the only thing to do at this point....Is there any suggestions on how I should I might be able to get through this yet again new stage of Batten's. Thank you all in advance
Darlene Royalty
Feb 17th, 2009 - 7:03 PM
Dawn, I know what you are going though. When we decided to bring home a suction machine I was so nerves too. We have two girls and lost one in Sept. of 2007. Amber and Sarah both need to be have suctioning. I think you just get used to it. I was afraid I might go down to far, but the girls let me know if I am. Sometimes they throw-up their ensure but I feel at least we have broken up whatever was making them gag. It is just another thing we do as parents. Trail and error. I wish you didn't have to go though this but it can't be helped and if it helps to make our kids feel better than that is what we must do. Good luck and I know you will be fine. You can do this.
Darlene
Lincldad
Feb 18th, 2009 - 4:09 AM
hello, here are some of my thoughts. I've been suctioning for 3+ years.
-I currently use a 10fr catheter whistle tip, no yaunkers(sp). I started with an 8fr and keep 8fr around for when I need to smaller tip. Yaunkers(sp) are for the birds IMO, however we have a fundo. and do not need to suction anything but spit and mucus.
-Clean the bucket on the suction machine daily. Add mouthwash to the bucket after each cleaning. Clean the bucket with vinegar once a week. The smell will be terrible if you don't.
-Get two machines, one stationary and one mobile (12V).
-Eventually my daughter lost most of her gag reflex, it is trial and error as to how deep to go, when the reflex goes that is not an issue. Currently I hit upwards of 20mm, I remember 8mm and 14mm deep for a long time. Going too deep can drag junk up that you don't want, be careful.
-Use suction tips with a Carb (hole), go in with your thumb off the hole, then plug the hole and suction out. You'll learn the "sounds" to listen for.
Hope that helps you
Lincldad (10yr, lincl, F)
Peggy D
Feb 19th, 2009 - 12:32 PM
Hi Dawn,
I can remember how nervous I was too when we had to begin suctioning for Christopher (late infantile). It's a bit of trial and error, but if you start out gently, your child will let you know. The first time you're able to clear him out, you'll feel so much better about it because you'll know that it has really helped him. Confidence will come. The other tip I can give you other than keeping the container clean everyday is to keep a cup of water (preferrably warm) around near the machine. After suctioning, be sure to then suction plain water through the tip and tube to keep them cleared. This helps with keeping the unit clean. Good luck, you'll do fine.
Peggy D
Bonnie
Feb 23rd, 2009 - 3:04 PM
Have you tried any type of medication to help dry up the secterions such as artane or scapolamine(sp?)patches(patches for sea sickness and vomitting).My daughter was on the patches,they did seem to help for a time.They can be purchased at any drug store. As the disease progressed she needed to he suctioned more frequently.It just becomes one of the things that we do without really thinking about it.I used high capacity yuankers.Not the great big blue ones.There are clear ridged ones that are as fine as catheter suction tubes.They come in fine,normal and high capacity.I used these for oral suctioning as she would bite down on the suction catheters and stop then from working.I used 10fr oral catheters when she needed to be deep suctioned.We tried not to do deep suction too often.We had lots of tricks to simulate a cough it was only done as a last resort as we found that it often caused more irritation which resulted in more suctioning.I also used a lot of the foam tooth ettes to clear out the mouth.
Don't be nerves about getting it.If you get it and then choose not to use it that is okay too.I do know of families that have chosen not to do any suctioning at all.We all do what we think is be for our child and you will to.