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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
08-04-2008, 10:54 AM
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Finally someone being proactive with Tommy
I just got off of the phone with Tommy's nurse. She also had him Friday and saw all of the changes they made with him. I told her about how inconsistant it was over the weekend and how Tommy hadn't done well. Thank goodness she's back and it's a brand new week! She has his PMV on him again and put him on a nasal cannula. (and diapers on his hands so he can't rip it out) The plan is to wean him today.
She said she feels like things were done quickly on Friday just to see if he could tolerate capping right away. She also said instead of doing all the messing around they did with him, they should have backed off and started with the PMV again after they downsized his trach. Plus by wearing the nasal cannula, he can feel air in his nose and hopefully will start to do some nose breathing as well. Then once he's able to tolerate the PMV and cannula, they can cap for a while too. Eventually he will be weaned off the O2 and capped. The plan is to keep him in the hospital until decannulation. Nobody wants him to leave that hospital with his trach!
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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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#3
08-04-2008, 12:44 PM
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Glad you got this nurse to listen to you Rene, it's good to have someone on your side
 Julie x
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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
08-04-2008, 02:47 PM
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Great I am glad somebody is really looking after him since for obvious reasons you can't.
I sure hope everything will be as scheduled. Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
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#5
08-04-2008, 03:05 PM
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Tommy's down to 1/2 liter of O2 and his sats are still beautiful. He should be off the cannula today. RT pointed out that Tommy is probably taking in all of breaths from the trach and the nasal cannula wasn't really giving him that much oxygen, so for his sats to stay up anyway means a whole lot more than just good sats. It means his lungs are healthy too!
I got the "official" word that Tommy stays until decan! Woo-Hoo! I'm content to take things slowly. We have a mandatory status conference with DSS tomorrow and I'm going to have my lawyer demand unsupervised visitation. I want all of this to be over. On one hand, it's given Rob and me chance to do repairs that would have been not possible with Tommy here (bug spray, sawdust from construction, odors from silicone caulking, etc). On the other, my heart breaks over and over all day long. I can't even go into their rooms.
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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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#6
08-04-2008, 03:23 PM
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Hey Rene,
In case Tommy ever does need the nasal canula, we actually cut off the prongs that go up into Ayden's nose b/c he hated it so much. Without those prongs, Ayden wears the canula w/ no problem. The downfall is that it does move some, so we do have to adjust, but this way we weren't fighting w/ it. 
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Dawn  former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -  Follow decan at: http://sleepy-dogs.blogspot.com/
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#7
08-04-2008, 03:56 PM
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Quote:
And I'm glad you've got a nurse that you feel you can trust.
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SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Blog Link: http://ainsleyrae.blogspot.com/ 
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#8
08-04-2008, 07:46 PM
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Sounds so good. I hope he gets to come home to mom and dad. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#9
08-04-2008, 07:55 PM
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Thank God for good nurses!!
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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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#10
08-04-2008, 09:11 PM
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Good nurses are hard to come by, but glad you found one! I can't even imagine the ache in your heart with your boys gone. I know it stinks for Tommy to be inpatient this whole time, but hopefully by staying around the hospital, he will be home with YOU.
I second Dawn, we have to trim the prongs on the cannula. She HATES that thing. Hugs Rene. You deserve a day at the spa! 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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