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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
03-08-2008, 11:55 AM
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Ambulance Just Picked Up Milo Again!!!!!!
He had a horrible night. As soon as we put him to bed he started with his coughing fits. He'd drop down to the 80's, but what freaked me out even more was, according to the monitor, his HR kept dropping drastically too.
I am already traumatized from last week. By the time my husband got home from work I had to go to bed. I left instructions for the nurse to give frequent tx's and CPT during his fits. By this morning he was back in respiratory distress on the maximum amount of O2 we could give him straight into the trach with no mist (with liquid O2). I just couldn't get myself to sit in the fricking ER for hours when I don't even think he should have been sent home. I called the PICU and the resident said to call the ambulance and he'll come down and see him right away in order to get him admitted quickly. I'll keep you guys posted.  Edit to add that his lower lip quivering and the tears didn't help me deal with them walking out the door with my son. My primary care nurse is with him, so he's in good hands.
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!  The Birthday Boys by TwinTransfusion, on Flickr Last edited by twintotwin : 03-08-2008 at 11:57 AM. 
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#2
03-08-2008, 11:58 AM
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I'm so sorry this is happening. Poor Milo, and poor You.
It is a smart move sending him by ambulance. Sending some  .
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Has a daughter who is vent dependent.
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#3
03-08-2008, 11:59 AM
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Aw crap. I hope things get settled down soon...none of you need any of this!! Thinking of you Kerry.
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Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/ 
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#4
03-08-2008, 11:59 AM
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OMG!
I hope he doesn't well and you as well too. I know you must be beyond exhausted! All of you are in my prayers!!!
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Angela  Homeschoolin' mom to 5 hobbits (Jonathon 4, Noah 7, Madison 19mths, DeeDee 18, Travis 20)Jonathon 4yrs old with CHARGE Syndrome. Trach, g-tube, had the Nissen 06/06. Hernia repair 03/08 Lots more, but too much to list.
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#5
03-08-2008, 12:01 PM
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Kerry,
Bless your heart. Enough is enough. Hoping that he is healthy soon and THEN home. As tough as it was to call, you know you did the right thing. At least this way too, he won't be sitting in the waiting area. He will be seen right away. At least you trust the nurse that is with him. Hugs to all. Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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#6
03-08-2008, 12:02 PM
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Oh Kerry, poor Milo, and poor you
sending lots of good vibes across the pond, wish I could do more.Julie xxx
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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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#7
03-08-2008, 12:21 PM
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OMG! I am so sorry Kerry, I hope they cane help him quickly so he won't have a big stay. Your poor family needs a break. Tell Milo no more ambulance rides, I am sure like any boy he likes the sirens and gadgets but enough is enough! Seriously though, you guys are in my thoughts. HUGS!!!
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LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01) EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY 
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#8
03-08-2008, 12:22 PM
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OH GOD! Poor Milo and Mama!!
When is this horrible winter going to be over?????? Our kids need some decent weather and some sunshine NOW!!!
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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
03-08-2008, 12:27 PM
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Oh my! Sending big prayers and hugs your way for both of you!
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Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.  Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#10
03-08-2008, 12:32 PM
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Oh Kerry! No!
 I'm really worried for poor little Milo. He's really been having a hard time kicking this "touch" of pneumonia. I really hope they can get him the meds he needs so he can recover properly. Try to keep your stress levels down mama! I know it's hard when everyone is sick. Keep us posted!
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Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
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