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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

03-07-2002, 03:32 PM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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Hi, I've never thought it was any big deal for Alli to go without anything over her trach while indoors. It took her a long time to get used to wearing an hme at all, but after she got used to it she doesn't mind any more. The same with the pmv. As long as you make sure there aren't any obvious hazzards -- like dropped pieces of popcorn or whatever--in the carpet I wouldn't worry. She doesn't get dry and handles her secretions well so I guess it works for us!
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Grateful thorns have roses
24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08
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03-08-2002, 02:34 PM
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Member
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Join Date: Mar 2002
Location: Atlanta, Georgia USA
Posts: 464
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Hi,
Does your daughter use the barrel-shaped HME? If so, you can secure it with a rubber band. Just twist the rubber band once into a figure-8 shape, place it over the HME, then loop the trach ties through the ends of the rubber band. That way you can still stretch the HME off enough to suction her without taking it all the way off. Lily still uses the smaller HMEs so this won't work for her, but a friend of mine does this with her daughter's trach and says it works well. If you want, I can email you a picture of her so you can see what I mean; it's kinda hard to describe!
Hope this helps!
Erica (Lily's Mom)
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Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!
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03-09-2002, 02:21 PM
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Member
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Join Date: Mar 2002
Location: Barnsley, England
Posts: 437
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My daughter has never had anything over her trachy. If she gets dry I just throw in some sterile saline before suctioning her. I avoid taking her out on very windy or cold days. Other than that she manages very well.
Olga
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Mum to Grace age 8 1/2. Subglottic haemangioma. Decannulated 19/12/03 after being trached for 3 years & 3 months.
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05-05-2006, 12:31 AM
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Junior Member
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Join Date: Apr 2003
Location: Rancho Mirage, CA
Posts: 56
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My son Jet used to refuse to wear an HME and would take it off and throw it. (I think it just presented too much resistance for him when his airway used to be smaller and weaker). The way we got him to start wearing it was to tell him he couldn't go outside unless he wore it. That worked. Now he wears it all the time, and if it falls off, he puts it back on. It does get moist, and if he coughs into it, we suction it; and if the secretions are too difficult to get out (or look yellow), we toss it and start another. Our pulmonologist has always been insistent that he wear it when not on the mist(which he's only on at night, since he's so active). She says that the drier his airway is the more likely he'll get infections.
Whatever works best for you and your daughter, though!
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Danielle Cohen-Bautista,
mother of Jet Bautista: DOB October/2002
Goldenhar Syndrome: VSD, tracheal stenosis, hearing deficiency and underdeveloped outer ear; pericardial patch tracheoplasty, tracheotomy, reflux, Nissen, g-tube
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05-05-2006, 12:04 PM
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Senior Member
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Join Date: Oct 2005
Location: St. Louis, MO
Posts: 2,823
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I don't know how I missed this post earlier. My husband made a guard for our son's hme/artificial nose. Here's a picture of it. It's a mist collar mask with the parts taken off and trach ties to hold it in place over the trach and trach ties. He's only 7 1/2 months old, but it keeps him from removing his hme.

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Kristy
Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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05-06-2006, 12:23 AM
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Mentor
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Join Date: Dec 2003
Location: Denver, CO
Posts: 5,387
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shoelaces 
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Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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