What do you mean by using a chain w/ the Shiley? Is that in place
of ties? My son has a bivona trach tube. We have to change the
velcro ties each morning, which is somewhat difficult. Is a chain
easier? It sounds like it might be uncomfortable though.
Sarah, mom to Jack (6 months) with a laryngeal cleft
--- In Tracheostomy_infants@y..., "haggymammy" <aasknc@a...> wrote:
> Hello all! My name is Karin, I live in Georgia and I am mommy to
> several children. My husband and I have 4 biological children and
> adopted with special needs. 3 of our bio kids have grown up and
> and we have 4 living with our Heavenly Father. We have 18 at home
> now, 2 of them have trach's. One that has passed away had a trach
> well. Drew is almost 2 1/2 and was trached the end of January
> He has hydranecephaly with hydrocephalus (means he has no brain at
> all and has hydro for which he is shunted). Drew also has a G-
> He is a precious little boy! He uses a Shiley and a chain instead
> the ties. The chain the hospital put on him rusted terribly within
> about 2 days, we recently got some from SCOOP and they have a much
> better clasp. Adam is 6 months and was trached at a few days old.
> He has HIE (Hypoxic Ischemic Encephalopathy)and also a G-tube.
> uses a Bivona trach which I like MUCH better than the Shiley. Our
> son who passed away also used the Bivona but his was the Bivona
> Trach. I have a problem with little Adam though, he arches really
> strongly, makes himself into a "C" and often flips over doing it.
> His trach gets blocked or actually pulled out sometimes when he
> this. He also tangles up terribly in his feeding tube, apnea
> pulse ox, etc. We stopped using the trach collar and mist, he is
> an HME full time and does soooo much better. That leads me to a
> question, do you know why some places recommend cool mist and
> heated? Drew is on heated.... I will be traveling with Drew this
> coming weekend to Texas for a week. It's going to be interesting
> see how it goes bringing all his machinery... Looking forward to
> meeting everyone!
> Karin <Mommy to Kristina (22) who is mommy to 1 yr old Grace, Faith
> (19), Cody (19), Julia (15) Down syndrome, Brandon (13)Down
> Celiac Disease, Nikki (13) Reactive Attachemnt Disorder, Ashley (9)
> Cornelia de Lange syndrome, nonverbal Gtube, Matthew (9) shaken
> syndrome, hydro/shunt, blind, cp, non-verbal, Jamie (8) Down
> syndrome, bi-polar, pseudotumor cerebri, Jon-Luke (8) blind/deaf,
> lives in Africa, Brianna (8) Cornelia de Lange syndrome, Gtube,
> nonverbal, nonambulatory, Sarah (7) spina bifida, Cecostomy tube,
> (6) Down syndrome, dwarfism, Cookie (6) hydranencephaly without
> hydrocephalus, cp, blind, G&Jtubes, seizures, Christian (5) Autism,
> Devin (5) maximal hydrocephalus, Gtube, Cystic Fibrosis, Priya (4)
> Down syndrome, Ehlers-Danlos syndrome, BULLY! Jenya (3) Fetal
> Alcohol Syndrome, Craniosynostosis, ambiguous genitalia (maybe
> intersexed), Drew (2) total hydranencephaly with
> hydrocephalus/shunted, G-tube, trach, blind, cp, my heart and
> Rose (1) Down syndrome, Lawson (10 months) Hydranencephaly with
> schizencephaly with hydrocephalus, shunted, g-tube, blind, cp, Adam
> (6 months)Hypoxic Ischemic Encephalopathy, trach, g-tube, cp,
> hypertension. Holly (free) Trisomy 13, Hannah (free) Herpes
> Encephalitis, Simon (free) Di George Sequence, Dandy Walker,
> grade IV bleed, Heart defects, lung disease, trach, shunt, g-tube.
- yes more about the chains please......