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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. |

10-11-2009, 11:43 AM
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Join Date: Sep 2009
Location: Chicago
Posts: 328
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Traveling after we're home?
Although we really don't know when we'll be home, we realize that it's going to be closer to the holidays. As of now, I think we'll be in the hospital until close to Halloween. Then we're going to Children's Memorial on 11/1 for a 4 day assessment. After that, it's only a few weeks until Thanksgiving.
Now, we have been trying to take turns with hosting it for DH's family since it's for 26 people, making it a lot for the same person to do it every year. However, 3 of the 6 families all live in the same small town. Two of the families we don't want to have it there. Various reasons, but not really important for this. The 3rd one was supposed to have it last year, but my SIL's father passed away right before that, so we took it again.
So this year, they said they would do it now. BUT... now that Kira's got her trach, and it's all so new, and we'll barely be settled in at home, I'm concerned about traveling that far. It's an hour or so from our house, on the holiday weekend, and it's at least an hour to get to any major hospital. I think this is important for us right now. I'm sure we'll be more comfortable as we get used to it, when our nursing gets settled, etc... But for now, the thought of being that far away concerns me.
However, before I bring this up with them, am I being irrational?? Is this a legitimate concern? DH seems to agree with me too. We'd have NO problem hosting it again. Or my other SIL who lives about 25 minutes away, but like 15 minutes from our hospital, has said she would do it this year too. So, any advice or ideas?! TIA!
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Cindy, stay at home mom to twins Kira (ROHHAD [1 of only about 75 kids in the world], ventilated 24/7, tracheostomy on 9/18/09, tracheomalacia, obstructive & central sleep apnea, 80% collapsed airway, obesity, asthma, nystagmus, and Asperger's diagnosed 2/2011, serious/complex behavior issues) and Christian (age 9)
http://www.caringbridge.org/visit/kctwins
www.kctwinmommy.blogspot.com
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10-11-2009, 12:13 PM
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Junior Member
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Join Date: Oct 2009
Location: california
Posts: 14
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Our family has always understood Nadia comes first when dealing with her medical issues. I think your family will understand this too!
Sorry i'm not of more help
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Amy & Dago...Parents to 4yr old Nadia
(trach, p/t vent, seizure disorder, Vp shunt, left hemispherectomy,
mentally & physically delayed)
And our nurse in the making, 2yr old Sasha
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10-11-2009, 12:57 PM
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Senior Member
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Join Date: Jan 2008
Location: Scotland
Posts: 1,374
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personally, i think that whilst the journey may be perfectly "do-able", it is too close to you getting home and settling in to even contemplate it. if it was me i would not be making that trip.
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*clare.
mum to emily 12/02/07 (placental abruption)
APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day.
Grade III SGS - emergency tracheotomy July 2007.
2 stage LTR July 09 - DECANNED 27.9.09
tracheomalacia (GONE!! Sept08)
partial agenesis of the corpus callosum
residual VSDs post-surgery but lung pressures normal (Nov08),
?septo-optic dysplasia.
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10-11-2009, 01:34 PM
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Join Date: Mar 2009
Location: Texas
Posts: 323
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We travel 6 hours with our daughter as least once a month so it is do-able BUT if we were just getting home and settled in I probably would not want to travel either. I would mention your concerns to your family and see what they say. You never know, once you get all settled it may be nice to get out of the house for the weekend. We thought once we first got home that we wanted people to wait to come visit so we could get all settled but after the first couple of days home we realized we did not need much settling and we were ready for visitors. Maybe you could wait closer to the holidays and how it's going to be once you are home to decide if you would like it at your house or to travel elsewhere.
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Lacy, mother to Madison (10), Gage (6), and Autumn (1) who has spina bifida, Chairi II Malformation, trach, vent, and g-button. She is pure joy and I am so blessed to be her mommy.
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10-11-2009, 01:47 PM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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As you are new to this and just getting home I agree that it may be best to give this trip a miss this year. your family should understand - the trach is a big deal and it may take you a while to get comfortable with travelling long distances. there will be other times and things will get better as you grow in confidence 
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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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10-11-2009, 05:59 PM
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Senior Member
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Join Date: Jan 2007
Location: Colorado
Posts: 3,979
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I agree with Clare... had you been home 6 months or if it were next year, I would say go for it, but if you have any reservations... they will be in your head worrying and you won't have any fun. I would say, just have a quiet holiday at home and celebrate.
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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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10-11-2009, 06:40 PM
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Senior Member
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Join Date: Jul 2005
Location: VA.
Posts: 3,664
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i hope you enjoy whatever u decide. thats whats important.
__________________
Last edited by Kaylie : 10-11-2009 at 09:34 PM.
Reason: want to delete
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10-11-2009, 08:06 PM
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Senior Member
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Join Date: Feb 2009
Location: Carnegie, PA
Posts: 2,041
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It is easily do-able, we travel with Joseph alot, but it is alot of extra packing, and supplies to make any trip (even a trip to our MIL in the same town) suction, catheters,saline, meds, ect.. If you are home in time to think and make lists of what you use and need regularly and feel comfortable, I would do it~ but if you dont feel ready yet, it may be better to have it closer to home. ... I believe having it somewhere else than your house may be nicer too.. because there is alot of suppplies, equipment ect... that need to be organized and put away also.. and adding the house cleaning for company, and cooking you may be really overdoing it (also if it is not at home, you can leave if you feel that it is becoming too much for Kira)
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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10-11-2009, 08:47 PM
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Member
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Join Date: Sep 2009
Location: Chicago
Posts: 328
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Thank you so much for all your replies! It just helps to have others opinions to back up my beliefs. I think it would be best if my SIL could do it. It's a good point that if/when we're tired, we can just leave.
And yes I'm sure that we'll want to get out of the house more as the time passes. But I know it's a challenge, it's like having newborns again. And with having twins, those days were tough at times. So I can imagine what this will be like. It's not as if we forget some equipment, we can pick it up at Target like diapers or formula.
I'll have DH tell his brother (who was set to host it this year) and explain to him that traveling like that, right now, just isn't an option. And if it comes down to it, her and I won't go. It's not my family, it's DH's family...
__________________
Cindy, stay at home mom to twins Kira (ROHHAD [1 of only about 75 kids in the world], ventilated 24/7, tracheostomy on 9/18/09, tracheomalacia, obstructive & central sleep apnea, 80% collapsed airway, obesity, asthma, nystagmus, and Asperger's diagnosed 2/2011, serious/complex behavior issues) and Christian (age 9)
http://www.caringbridge.org/visit/kctwins
www.kctwinmommy.blogspot.com
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10-12-2009, 08:08 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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Will she go back to school right away? My concern is more germ related. If she won't have been back in school and given a trial run for her germ resistance, I'd stay home and away from the masses this year. But that is me. If she will have been at school and you have a good feel for how she is going to respond, then I'd go. My two cents.
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