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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
04-03-2007, 08:51 AM
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LTRs PLEASE HELP!!!
I am seriously becoming very depressed and overwhelmed with this LTR thing.
Our last ENT in NYC told us Milo will need an LTR to decan. He never even got to looking at Elijah since he felt they were going to be the same. I just can't go to OHio for SO many reasons- the main one being logistics! Since we live in NJ, it's nearly impossible for us to travel back and forth to Ohio- we can't even fit everyone into our car. My husband can't get all of the time off from work we'll need...and I just can't do it alone. Basically this is taking it's toll on my health. Emotionally and physically. I've been ill for weeks now. Intense fatigue and swollen glands. I don't have any energy left to do this research. I am OVERWHELMED!!!!!!!!!!!!! I can't take it anymore. There HAS to be an expert LTR surgeon closer to home. I recently posted a thread about Boston because I heard a rumour there was a doc there. But I have yet to find him/her. If anyone knows anything or anyone I can talk to...I need help. I just can't think clearly anymore. I am so upset and worn-out. Love Kerry
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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 
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#2
04-03-2007, 08:57 AM
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Kerry -- email Dr. Cotton and ask him for the names of surgeons he would recommend in the PA-NY-NJ-MA area. He will respond. Trust me, he has no problem referring people to other surgeons in their area. Here is his email:
robin.cotton@cchmc.org
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Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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#3
04-03-2007, 08:59 AM
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Kerry, I don't have any words of wisdom, but seeing what Christina has been through the past couple weeks and knowing what you have gone through I can certainly understand why anyone would go into full blown panic attacks. On the other hand there are success stories. Maybe you can focus on those?
 
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Linda - Mom to Collin, former 30wkr, IUGR, Severe BPD, in NICU 9months (decannulated 8/03), g-tube (removed 9/10), Neurodevelopmental Delays (secondary to complex medical history),ADHD-Inattentive Type, Sensory Processing Disorder www.nicumama.com www.purplelotuswebsitedesign.com
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#4
04-03-2007, 10:11 AM
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Yes, email Dr. Cotton. He responds very quickly and is happy to give you names of doctors he feels will do a good job. It will work out--you just need to get in with a good doctor.
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Kristy Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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#5
04-03-2007, 10:52 AM
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I'm echoing the suggestion to contact Dr. Cotton. We did that, and he was the one who directed us to the doctor who did Matthew's LTP - she's only a 5 hr drive from us in Nova Scotia, Canada. If he's got a former colleague in Canada, he surely has one close to you. The doctor who did Matthew's surgery was *incredible* and honestly Dr. Cotton couldn't have done a better job himself - Matthew was in and out in 8 days and the surgery and recovery went extremely, extremely well. Ask him to recommend someone. He replied to our email within 15 minutes - he's quite a guy!
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Val, Mom to Matthew, former 26 weeker, trach-free since July 2005.
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#6
04-03-2007, 11:10 AM
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Kerry,
No advice but....my favorite saying that my husband always crams down my throat is. Sometimes you have to be a little patient because good things always happen to good people. I know you are going to find your surgeon. Hang in there honey.You are my hero Kellyxoxo
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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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#7
04-03-2007, 11:16 AM
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By the way Kerry, Dr. Nuss at Children's Hospital - Boston has done Max's surgery, the surgery was a success, Max is just having trouble with recovery and I think its due to Nutrition issues. Dr. Nusss wonderful and has an amazing reputation, I highly recommend him if your looking to go outside of NJ. He did Collin's trach revision surgery (obviously not nearly as intensive at an LTR) but he did an amazing job. Also, Dr. Nuss put Christina in touch with a mom who has a set of twin's that he did the LTR surgery on.
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Linda - Mom to Collin, former 30wkr, IUGR, Severe BPD, in NICU 9months (decannulated 8/03), g-tube (removed 9/10), Neurodevelopmental Delays (secondary to complex medical history),ADHD-Inattentive Type, Sensory Processing Disorder www.nicumama.com www.purplelotuswebsitedesign.com Last edited by lac : 04-03-2007 at 11:20 AM.
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#8
04-03-2007, 12:05 PM
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Kerry
No advice here, I'm afraid, that's something we are not likely to have to face. You can't be superwoman all the time, give yourself a break and try and get some rest (sorry, not much help)We all think you are great! Hang in there. Love Juliexxx
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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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#9
04-03-2007, 02:25 PM
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Kerry, it's ok to step back and take a few unencumbered breaths. Give yourself and the boys some time. You're one of the most resourseful people Ive ever met and I know you will be able to find a way.
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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#10
04-03-2007, 06:09 PM
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2ltp & 1 T-tube
My son is 6 years old we have been driving from Illinois to Cinci for 3 years rain snow or sleet, we love the Ronald McDonald house. It became alot for my husband to travel with us i talked to my nursing agency and i have one nurse i really have become close to in Chance's 6 years of life.The nursing agency allowed her to travel with me it is the only way we could do it. We ALSO DID THE AIRPLANE THAT IS FREE FOR KIDS WITH MEDICAL NEEDS.The bad thing with the plane was they are private owned little planes and the weather wasnt good enough for them to take me to cinci but they were able to bring me home. I think it is called Life Flight, there was alot of paper work but it makes it easier on our family. I have three other children on top of having Chance my trach kid, so with getting school aged kids to school and one pre schooler to grandmas, i feel your pain it is very stressful, please contact me if you need anymore advice. I hope I helped you.
Chance's mom
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