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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
08-24-2006, 11:31 PM
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Thought I would give our trach family another update on Kara. Things are about the same. The ortho dr said that her foot is fine and that the reg dr's are really grasping at straws. Kara is still pretty sick. We had an episode yesterday morning. She had slept ALL night. Everything was so thick that it just kept building up. Kara droopped her sats in the low 70's and was unresponsive for about a minute. I put lots of saline down and suctioned lots. She was fine after that. Her sats today have not been very good at all staying from 88-92%. She is at 85% now and I feel like pulling my hair out! We also found out today that she has influenza something so that explains her goop and gunk and sats to an extent. How do you have that in August!!!!!!!!!!!! They are more worried about Kara psuedomonas in her urine than in her trach. They are now cathing her every 4-6 hours after she pees to see if she is just not emptying good enough. How can that be an issue now when it never was before! She once again grew 4 bacterias from her trach and 2 are different than the last time. Go figure! They just found out today that the antibiotic they have had her on is not helping the psuedomonas because it is resistant to that particluar antibiotic. So, I am not sure if this is going to prolong our stay but I sure hope not. We have been here since Sunday night but it seems like FOREVER! How did I ever do this for almost 6 months straight!?! I am rambling at this point so I guess I will get off from here. Time to go to bed and get some sleep.
Good Night Everyone!!!! Rachel
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Rachel mama to Kara Beth April 9, 2004 Laryngomalacia, High pallet, FINALLY vent free (8/05), Precious Smiley Princess who will tell you like it is!!!! & Timothy Sept 2008 Healthy as could be Also expecting again due in June 2010  
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#2
08-24-2006, 11:41 PM
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  Love Kris
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Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
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#3
08-25-2006, 12:21 AM
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Kelly
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no  you are the reason I bound out of bed. Thank-you for giving me life! See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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#4
08-25-2006, 01:32 AM
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Ugh! And to think, there was a time when I thought autumn was better than ice cream. Sasha's already had a cold and Milan's just getting rid of it...and in August. This time of year...not so great to me any more.
Hang in there, Princess Kara, and battle those bugs away!
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Milan - 10/01/04, 31 wk preemie due to maternal HELLP syndrome. Has challenges. DECANNED AUG 2006 and so far, so good with the nose breathing!
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#5
08-25-2006, 08:34 AM
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I'm so sorry that Kara is having such a rough time. I hope they figure out the right combo of meds and you guys can get home where you belong!
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007. B & C are surviving triplets. Brooke survived for 1 month.
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#6
08-25-2006, 08:41 AM
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Get well soon Kara!! Annette
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Annette, mom to Ashley born May 13/03, pfeiffer syndrome type 2, cloverleaf skull, g-tube, fundo, shunt, dev. delay, seizures, untreatable central apnea. Decanned September 3/09!!! Also mom to Mitchell born Feb 27/08, perfectly healthy. They've made my life complete.   
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#7
08-25-2006, 08:44 AM
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Rachel,
I hope today brings better news! Are they getting any residual urine when they cath her? 
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Dawna, Mom to Tristan 6 yrs, former 22wk preemie with trach (decanned 6/20/07!!), Josh 25, Jenna 21, Gracie 14, and Jon 11. Photography website: http://pricelessmemoriesphoto.com/ 
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#8
08-25-2006, 10:00 AM
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Oh, Rachel,
I hope it gets better soon for you guys! Poor Miss Kara Beth!
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad! 
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#9
08-25-2006, 11:34 AM
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Rachel,
How in the world can she get so sick in...of all months...August!  I know you are asking yourself the same thing. Pseudomonas is more worry some in the urine than just in the trach because that means it's in the blood. You know the kidneys filter the blood...kick out the waste and help balance our acid-base balance in our body. Does para-influenza sound familiar. Mac had that once and was really, really sick. It was virus so we had to just ride it out. It caused so much extra secretions she would gag and throw up a lot. Maybe that helps to know with her sats being so low. It sucks just to ride out these things. Keep us updated love. Hugs Janet
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Janet, mom to McKenna (5) and Randy (21). McKenna, currently speaking in tongues at a rate of 80 gibberings per minute driving her parents, sibling into a happy state of dazed insanity! Trached at 2 months d/t lymphangioma
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#10
08-25-2006, 12:02 PM
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Janet,
The para-influenza is exactly what she has! We are just sitting her waiting for time to go by. She is still pretty miserable but we have gotten a few smiles today. They have stopped the cathing because they think she is emptying her bladder well enough and cathing can also cause infections. That is about all that is new. Rachel
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Rachel mama to Kara Beth April 9, 2004 Laryngomalacia, High pallet, FINALLY vent free (8/05), Precious Smiley Princess who will tell you like it is!!!! & Timothy Sept 2008 Healthy as could be Also expecting again due in June 2010
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