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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
11-06-2005, 07:43 AM
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Alissa as all of you know is going to have the stage one LTp done by Dr Cotton on the 28th and i am scared to death of the unknown. She has been so healthy with the trach i am afraid for them to take it. When she first got the trach i hated it. Now i am just scared of her losing it. I love her so much her being sadated scares me plus being on the vent and also the risk of infection. I am a nervous wreak. I will be happy when the trach is going and she is doing well right now i am scared of the unknown. Those of you that had the ltp was was your scareist and best experience with it
keep alissa in prayers mandi nervous mommy
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Mandi mom to Alissa Former 24weeker born 2-25-04 trached May 04. Had Ltp 11-28-05 Now trach free.  Also mom to Makayla age 8 and summer2 www.caringbridge.org/visit/alissa 
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#2
11-06-2005, 11:31 AM
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Mandi,
I nearly abused Tylenol PM for weeks prior to Hannah's LTP. We did a 2-stage (well, still in process should I say). But, Hannah did have another airway surgery that required sedation. That was awful. She looked so lifeless and every time she even started to move, they'd hit her again with some other drug. The LTP IS scary. Hannah didn't do the whole sedation thing with it...it is a long road, but keep your faith. Make sure you ask lots of questions, and if you think something isn't right, SPEAK UP!!! And DON'T be afraid to demand to speak with the man in charge. Cinci Children's (as I'm sure is the case with many/most teaching hospitals) is famous for info getting passed to the parent by a resident or fellow. If you feel you aren't getting the true story or that something just doesn't seem right, do NOT feel as if you can't ask to speak with someone higher up. Demand that they respect you as a parent and caretaker. I will try to get down there to see you either before/during your stay. Please feel free to email/private message me if you need anything while you are in town. We may be there some too as Hannah is awaiting a possible capping trial... Take care. Many prayers for a safe, successful surgery. 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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#3
11-12-2005, 10:56 PM
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Mandi,
I don't have any experience with LTPs yet, but we will this spring and I am already nervous! I wish you guys the best of luck and I know you will be fine. I'm sending lots of good vibes your way! Lora 
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Lora - Mom to Zoe (12/26/04), former 27 weeker, BVCP, Subglottic Stenosis, mild reflux, g-tube http://www.caringbridge.org/visit/zoeglasel
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#4
11-13-2005, 03:51 AM
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Mandi
I'm sure you must be terrified. It fills me with dread every time Sam has to have anything done, especially when they are so well. I'm sure things will turn out just fine. Sending lots of good vibes your way. Love Julie
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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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#5
11-13-2005, 06:30 AM
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Hi Mandi, I have no experience with an LTP, but I just wanted to wish you all the best. All of us on the board will be keeping you in our thoughts and prayers.
Teresa ________ Dementia advice Last edited by T-bone : 03-25-2011 at 04:48 AM.
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