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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. |
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#1
09-02-2009, 11:30 AM
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update on Alexander
As soon as we get supplies, we are going to start sprinting!
The plan, tentatively, is to keep him on the vent at night through the winter, and to use it during the day this winter if he has a bad day. But otherwise, 1/2 an hour twice a day to start, adding an hour total per day each week, until he's on it all the time he's awake, then we'll start with his morning nap, then the afternoon nap. With any luck, we'll be vent free during the day by Thanksgiving. We're going in for a bronch in 2 weeks. The ENT was very happy this morning with his stoma, and a bit surprised that we'd never seen an ENT. He wants to check things out just to make sure there's nothing to be worried about in terms of potential decan at some point in the future, and will determine next appointments based on the results. Neither doc wants to upsize the trach, which is good because Alexander is getting pretty good at making sounds around it. The other big thing is that our IEP kicks in this week. Teacher is coming to the house - so far I don't like her or trust her, and I'm not sure what to think about the goals they've got set, but the first couple of visits are when we've got a nurse we trust here, so I'm sure we'll sort it all out.
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Janet, cruncy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia  
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#2
09-02-2009, 12:27 PM
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Great news about the sprinting!! It makes things soooooo much easier when you dont have a vent to lug around everywhere. Also, I was very suprised at the rate that Joseph started hitting his goals and milestones once he was free from the leash that held him in a 6' area. I'm sure Alexander will start speeding up and you will be amazed at how much they learn and how quickly- when they are actually able to go and get into stuff
 Hope Alexander will like his teacher- we have a few therapists that I cant wait to get rid of in Nov once he hits 3 and we are done with EI....but, it is the same if you sent him to school.. you dont always get to pick the teacher your kids are stuck with, and some of the ones my daughters have had they have loved- while I couldnt stand them.
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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#3
09-02-2009, 02:36 PM
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Great news on the sprinting! he won't know what to do with all that freedom. hope the teacher works out
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#4
09-03-2009, 12:27 PM
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Quote:
 Happy weaning!!!
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#5
09-03-2009, 01:43 PM
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great news!
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*clare. mum to emily  12/02/07 (placental abruption)APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day. Grade III SGS - emergency tracheotomy July 2007. 2 stage LTR July 09 - DECANNED 27.9.09 tracheomalacia (GONE!! Sept08) partial agenesis of the corpus callosum residual VSDs post-surgery but lung pressures normal (Nov08), ?septo-optic dysplasia. 
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#6
09-03-2009, 03:13 PM
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Yay! That's wonderful news.
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Gabriel: born 12-07 PRS G-tube and Nissen 1-28-08 Trach 6-06-08 Palate repaired 2-03-09 www.caringbridge.org/visit/gabrielsmith
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