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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. |

05-15-2012, 11:19 AM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,484
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Best Outcome From Appointment?
I know I'm a little bit of a control freak. But since we are traveling thousands of miles to see Dr. Cotton I want to make sure things go as well as possible next week so I wanted to ask for opinions from those of you who've seen him and know his style.
Would it be helpful to type up a history by category and send it via e-mail prior to our visit? Or bring it along? It might help me from talking too much and taking up too much of his time since Ainsley has a complex medical history. I want to make sure he has any pertinent information to making a diagnosis and a decision about what to do for Ainsley but I don't want to overload him or the team with information either. I'm afraid that if I don't have it written down I may realize afterward that I forgot a few potentially important details.
I'm not really sure if all the history and her other conditions will be very important in his decision. The last time we went it our time with him was rather quick, but we really didn't know too much then, and she was a lot younger(less history).
Any thoughts or tips? They did take a pretty extensive medical history over the phone so perhaps they already have what they need. Though it's been so long I don't recall if they covered everything. TIA!
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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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05-15-2012, 11:56 AM
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Senior Member
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Join Date: Jan 2009
Location: Troy, MI
Posts: 2,411
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I find that having a resume-style health history is good for meeting new doctors (and for helping make sure I don't forget anything). Even if it's all in the notes they've gotten from someone else, it's faster to look on my list.
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Janet, cruncy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia
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05-15-2012, 12:14 PM
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Member
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Join Date: May 2011
Location: West palm beach
Posts: 578
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I don't know Dr. Cotton or his style, but I would agree that typing up some sort of guide to your daughter would help to smooth things out a bit. Anytime we are going to be seeing a new doc, I update Harrison's "cheat sheet", as I like to call it, and email it or fax it ahead of time so that we don't have to waste important time with the doc going over every detail of Harrison's history. I have it categorized: Pulmonology, ENT, Genetics, etc.
The new docs we have seen have always commented on how well this helps them to get to know Harrison in a shorter amount of time.
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 SUSAN-mom to Harrison, born full-term(11/1/10) with an undiagnosed congenital diaphragmatic hernia (CDH), hypoplastic right lung (caused by hernia), trached at 4 months, g-tube and fundo at 6 weeks. Home in March 2011. Weaned completely off of the vent in July  Wearing PMV 24/7, 02 at night, failed decannulation in October. Hoping for better results next time!
www.caringbridge.org/visit/harrisonsnow
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05-15-2012, 03:08 PM
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Senior Member
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Join Date: Dec 2003
Location: Ohio
Posts: 2,990
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We don't see Dr. Cotton, but another doc in the group. Anytime I have a list of things to discuss, I will send her ENT an email directly, and if I remember, I will cc: the PNPs. I will just tell him in the email that these are the questions that I would like to discuss during our appt. It's in her paper chart, usually with his notes on it.
If they don't want it, they don't have to use it. With complex histories, I think something like that is a great tool.
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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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05-16-2012, 07:02 AM
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Senior Member
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Join Date: Dec 2006
Location: Whitby, Ontario
Posts: 4,063
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Totally agree with Jenny. PMing you as well.
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05-16-2012, 11:30 AM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,484
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Thanks guys! I'm going to get right on it. I think it makes a lot of sense. Sometimes there is so much history and going on that I can barely keep it straight, so I do think a medical "resume" makes sense. Even clearly stating the objective of my visit. Suzanne I really appreciate your PM. Great info. Sorry but my box is now full. I'll try to reply later after I remove some messages.
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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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05-16-2012, 05:30 PM
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Junior Member
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Join Date: Jan 2011
Location: Leawood, KS
Posts: 9
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Dr. Cotton did my son's cord lateralization surgery. Our experience with him personally was that he was fantastic in the operating room, but he doesn't spend much time talking with you. He's very busy and he gets right to the point. I would definitely make sure he has all the info prior to your appointment, take a copy with you and a copy with the most relevent things pertaining to his part highlighted.
Good luck! We're heading back to see him in July for vocal cord injections to improve my son's voice.
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05-17-2012, 08:22 AM
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Member
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Join Date: Jan 2011
Location: NJ
Posts: 197
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I wanted to wish you luck on this journey Susan!! I cannot imagine the emotions you will be feeling!
And ditto on what everyone else said about your cheat sheet. Especially if you don't have much time with the doc's. I always take a print out with me that has dates/events/diagnosis/test results.
Good luck!!!
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Melissa - mom to triplets born 29w5d (8/1/2010) - Neva & Matthew are home and healthy! Jackson - g-tube/fundo (11/10), trach (1/11)
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