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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
03-29-2010, 11:17 AM
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Do you have a support system?
We live very close to my mom, which has made a world of difference pertaining to our family dynamic. She is a paramedic, so leaving Addisyn with her has never been a bog deal. She has been great with watching my other kids when needed and her employers know all about Addy and she has no trouble getting the time off for us. She really has made living this life so much easier for us. Who is your support system?
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#2
03-29-2010, 12:17 PM
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My mom as well
 Right now she is the only one that is trach trained besides DH and I. Ever since I have had Ashton she comes here Tuesdays and Thursdays to give me a break from about 11am-4pm.I love my mom
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 Mommy to Ashton. Former 24 weeker, now 5 years old! Ashton has severe cerebral palsy, severe reflux, g tube fed, legally blind, cochlear implant for hearing, undiagnosed cyanotic episodes and tracheostomy which was done in Dec 2009. The love of my life! Also mommy to an angel, Hunter who came way too soon on March 28th 2009 at 18weeks and 4 days.
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#4
03-29-2010, 12:26 PM
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My MIL and one of my SIL's are both trach trained, so they can watch Eric when Nate and I need some couple time. Nate and my mom and brother are all big sources of emotional support. My mom often takes Rose home with her for up to a week to give us a break.
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 Jen, proud mommy of Eric. ASD, VSD'S, coarc (all repaired) g-tube removed 2/10, DECANNED 4/7/10!!!!!!!!!!!!!! and baby sister Rose (mild asd but otherwise healthy thank God!!!!!!!Nothing and no one can beat you unless you let them, and then you will deserve it.
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#5
03-29-2010, 12:32 PM
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No support here, other than DH and my oldest daughter (who on her own decides when I need a break.. and takes her brother up to his or her room to play, so I can have some "alone" time... she has also recently started getting him ready for bed and putting him down while I fix his night formula and draw up his bedtime meds)
My inlaws are all afraid of the trach and machines, they havent ever even held Joseph. My mother passed away the year before he was born...I believe she would have been the one to help out when needed.... she was a no nonsense/ok lets figure this out type of person
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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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#6
03-29-2010, 12:57 PM
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No one else is trach/gtube trained here. We had a *MAJOR* falling out with Andy's family, and while I love my parents.... they panic in one hand and just don't respond in another. I remember having an asthma attack once and was starting to black out and loose feeling in my arms and legs. My mother made me wait at the kitchen table to head to the ER (instead of calling 911) so she could change clothes and shoes... because she knew we'd be in the ER forever and wanted something more comfortable.
 Nice. My Dad and his wife just feel really uneasy about it all and think they're going to hurt Mackenzie. All three have said they'd be willing to learn, but it just would NOT go well.
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#7
03-29-2010, 01:30 PM
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We have a good support group mentally, but actually physically it gets tough because both of our families live about 5 hours away. I have (or had) 1 very good friend here that was trach trained (she's a ST) but we've had a falling out of sorts (not sure how that happens when you're 30-but I guess you're never too old to lose a friend) We have another couple who want to learn and I trust them and hopefully will get them trained here soon so they can be out backup in case we'd ever need someone to care for Mitchell in a bind. My mom comes up about once every couple months and insists that we go out when she's here just so we get a brake.
I like to think we have a good support group-but like I said it is mostly for mental support and not necessarily for giving us a rest support. SO, it's just my hubby and me We have a couple nurses that Mitchell has had that I know if I needed to I could call them and they'd help out.
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT! www.caringbridge.org/mn/mitchelljohncragg 
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#8
03-29-2010, 02:18 PM
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We have basically no support. Luckily we have extensive nursing coverage.
We have one close friend who is trach trained; she lives about an hour away. The in-laws are afraid of Alexander, and although they attended training before NICU discharge, my FIL actually said, "you can't seriously expect us to be able to do all this..." My family lives out of state. I think some of the, would help if they were closer.
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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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#9
03-29-2010, 02:38 PM
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No support system here. No family trained (no desire to learn). I have three nurses that are wonderful (for the most part) that have been with us since Harlie was 6 months old.
~Christy
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Christy, Mom to Murphy, (8), Harlie (6) and Cooper (4). Harlie has Goldenhar Syndrome & VACTERL Assoc. Missing left ear/canal, left eye anomalies, g-tube & trached due to underdeveloped jaw, 5 open  surgeries, three jaw reconstructions (still trached, though), spinal fusion surgery, 30 surgeries total so far. www.lifesinceharlie.blogspot.com [IMG]  [/IMG]
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#10
03-29-2010, 03:17 PM
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support system as in re the medical stuff: no one really. my mum to some extent, but she lives so far away that we were never able to get her to be fully comfortable with the trach changes etc. if she'd have been closer, it would have been different. so it was just me and em's dad.
you know that since she has been decannulated, the situation is the same!! everyone works...there isn't anyone to rely on when she gets ill etc.
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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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