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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
01-24-2007, 06:22 PM
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Hannah is doing so well! Everyone is just AMAZED at her progress. We moved to the step-down floor on Tuesday. She is eating and drinking nearly as well as before surgery. She was off oxygen for most of the day...not bad for a kid who let a vent breathe for her for 2 weeks! She is doing much better with her sippy cup and can sit unassisted, although still a little wobbly. She is still cannot stand alone and gets very scared if you try to encourage her to stand. We are working with both physical therapy and occupational therapy each day. But her progress is truly a gift from God.
ENT is still planning to scope on Friday and then most likely HOME ON SATURDAY!!! Please pray that her airway heals nicely and that they have to do minimal work (dilating, removing some light scar tissue, etc.). Please also pray that we have an easy time in recovery. This is our first surgery post-trach (ohh...I got chills just typing that phrase...post-trach). She still has a tendency to clamp down (breath-hold) but not nearly as bad as before. She is saying a few words again...cookie, wow, yeah. Her voice is very harsh again, most likely due to some swelling on the vocal chords. But it is so good to hear that raspy little voice again. Her fight with withdrawals has subsided immensely. She will still shake from time to time, but that is about it. Another blessing....it would break my heart to see her crying and not be able to comfort her. Thanks to all for sticking by us. I will continue to update as I can. Please pray her scope on Friday is uneventful and that we are all sleeping soundly at home on Saturday. God bless. 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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#2
01-24-2007, 06:28 PM
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Absolutely wonderful! I am so glad to hear that things are going well. Prayers for Friday!
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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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#3
01-24-2007, 06:48 PM
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So awesome, Jennie! I'm so happy for you and Hannah.
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
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#4
01-24-2007, 07:07 PM
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I was hoping to hear from you again Jennie! I am so glad you are on the step down floor now! I am so impressed with how well Hannah is doing! I guess a 2 week nap after surgery can be very beneficial and healing, though it was difficult in many ways and scary at the time. Way to go Hannah! Keep being a fighter when you go home!!! Love you sweetie!
  Sarah
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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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#5
01-24-2007, 07:44 PM
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Wow! I am so happy for Hannah and your family. It sounds like she is doing great. We will pray that everything continues to go so well and that her airway heals very nicely without any need for further surgery. Yeah, I am so happy for you guys!! It gives us hope for success in the future as well.
Katie
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Katie mom of 26 weeker Jaden(08-03-01) trached at 2 1/2 months, 2 CTRs and 2 LTPs! Also mom of Haley(1-29-00) and Coleby (07-02-07). 
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#6
01-24-2007, 07:55 PM
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Awesome, Jennie!! This will be good to have behind you all!
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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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#7
01-24-2007, 07:58 PM
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That is such great news. We have all been praying that she would recover nicely. i hope fridays scope looks good as well. Deb
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Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
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#8
01-24-2007, 08:18 PM
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Hooray for Miss Hannah!! What a wonderful post to read!! I am so happy for you guys. Keep up the good work!! I will try to stop by and see you Thursday!!
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Sabrina, mother to Will born a 24 weeker May 4, 2005. History of BPD, Trach August 2005, Gtube October 2005, ROP, Single Stage LTP 1/25/07 and trach free!!!! The happiest little boy who is the center of my world!!
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#9
01-24-2007, 09:42 PM
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 Awesome news Jennie!!! 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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#10
01-24-2007, 09:56 PM
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Glad to hear Hannah is doing so well!!!
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Has a daughter who is vent dependent.
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