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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  
Old 02-23-2003, 02:35 PM
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nicksmom nicksmom is offline
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I am still freaking out!!! Â*Earlier today my husband had just left to go the store, so I was home alone which is no big deal. Â*Nicholas is 6 months old, we have been home for several months and he is on just a humidivent. Â*We have NEVER had any problems with him aside for the normal cold, flu, RSV stuff. Â*I had just finished feeding him and was putting him in his crib for a nap. Â*I did not have his pulse ox on (we normally only keep it on at night). Â*He started turning blue very quickly. Â*He let out a big cry, his eyes rolled to the back of his head and he got very purple! Â*I started screaming and called 911. Â*Of course it seemed like forever before I could find anything in his room, but I was able to get his color back somehow and wake him up. Â*Within minutes the police were at our door and the operator on the phone had called my husband. Â*We are not sure what happend, I think he choked on something. Â*By the time the police left he was back to smiling and laughing, a little tired but not stressed. Â*Unlike me who hasn't stopped crying. Â*I have him on O2 now just for my state of mind. Â*His sats are perfect and he seems fine. Â*We have never had to deal with anything like this since we've been home. Â*I am scared to death, what if it wasn't something choking, what if it happens again, what if.........what if........what if........? Â*I'm driving myself crazy! Â*Please tell me he's going to be OK. Â*Is this normal? Â*Have you guys ever had something like this happen? It's only been six months and I'm not sure if I can take much more. Â*How do you do it for years??? Â*I'm sorry to freak out, I just don't know where else to turn. Â*Of course noone around here understands and my wonderful husband just keeps telling me to calm down and that everything is OK and he's right. Â*I just need to figure out how to calm down.

Thanks for understanding.
Carrie
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Our little miracle, Nicholas Scott born 08/09/02; CHARGE Syndrome, bilateral cleft lip/palate, congenital heart disease, trach and g-tube, hearing aids. Decanulated!
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Old 02-23-2003, 06:34 PM
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Gretchen(Celia's mom) Gretchen(Celia's mom) is offline
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Everything will be ok,But I would like to suggest that you get ahold of his doc as soon as possible so that he can be checked out!!!! God is with you!!!! I am dorry that you had to experience what you did!!! My daughter has not done that since she has had her trach but had horrible episodes before the trach!!!! {{{{{{{{{{HUGS}}}}}}}}}}}
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Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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Old 02-23-2003, 09:53 PM
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Hang in there, I have had several of these kinds of episodes, there are several possiblities, write down every detail of what happen so you can relay it to your doctor. I'm no expert but I have had the unfortunate pleasure of the experiences. Â*You are going to be fine,and so is your baby, Â*believe it or not. Â*
You mention you had just fed him, it may have been reflux, I know your child has a G-tube but has he had the fundo done? Â*It may also have been a plug. Talk to your doctor.
Try to stay clam, I know thats hard but tried to think about what he's feeling, and let your training take over, I believe personally as he watches you, everytime you help him get the "bugs" out he learns too trust in you even more and you'll believe that too by the way he looks at you.
Forget the what ifs and go for what you know...Airway.Breathing. AND Circulation.
Let the doctors handle the Whats? Whys? and How?
Hang in there you did a great job! Â*
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Old 02-24-2003, 01:51 AM
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indiemum indiemum is offline
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What a brave girl! It's probably just one of those unexplainable "kid things" but I agree with the others, just check it out for peace of mind. One time I gave my Maisie (face breather) some gripe water at 5 weeks old to settle her tummy and the same thing happened, I was seconds away from 911. I don't know what happened but it never happened again. Poor little pumpkin, I hope he's ok. I hope you are ok. Hang in there and keep us posted.

Kelly
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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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Old 02-24-2003, 11:20 AM
Olga Olga is offline
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Hi
I know exactly how you feel. We had a fright with Grace last month when her temperature shot up, she started vomiting and then stopped breathing and went blue and floppy.
I managed to suction her clear and she recovered.
Luckily the doctor was already at our house when it happened so he called an ambulance right away. She was kept in hospital for three nights, had just about evey test they could think of, and we are none the wiser for what happened. The doctor put it down to a febrile convulsion as a result of the high temperature. I'm concerned that the doctor didn't insist on a trip to the hospital to get your son checked out.
I thought that I would never stop worrying in case it happened again, but by now I am more comfortable with what happened and feel that I would know what to do if it did happen again.
Other people who tell you to calm down have absolutely no idea what it is like to have a child that is so dependent on you, but I am sure that you will get a lot of support from the other parents on this website who have all got similar problems.
Good luck. Olga
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Old 02-24-2003, 05:27 PM
christyw christyw is offline
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I don't know if this will have ANYTHING to do with your situation, but Gaithy started having blue spells just after she came home from the hospital back a year and a half ago. It seemed to come from nowhere. We had ENT scope her at a visit and found a granuloma had grown just below the trach tube, and in certain positions this granuloma (harmless, benign tissue) was occluding Gaithy's airway. For a quick fix they ordered a longer trach which passed the granuloma and left Gaithy with a safe airway, later they scheduled her in the OR and had it removed with no complications. I would definitely say you should have him see the doc - but probably not just a pediatrician as he/she could just shrug it off (this happens sometimes) - ENT/pulmonary would be your best bets.

christy
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Old 02-25-2003, 02:59 PM
Laurie Laurie is offline
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How scary! Evan did this a lot in the hospital, but not since coming home. You handled it this time, so I bet you can do it again, if need be. Sounds like a doctor's visit is in order. Best, best wishes.
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Laurie - Mom to Evan (the E-man), 27 week preemie, born 2-23-02, trached at 3 months for severe BPD. Vent dependent until 10 months, G-tube placed at 17 months, oxygen dependent until 2 years, 3 months, decannulated 6-27-04 at 2 years 4 months. The most enthusiastic, positive person I've met.
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  #8  
Old 02-27-2003, 01:24 PM
j j s mom
 
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Sorry to hear about Ty, I'll say a prayer for the family and for you as well, for your peace of mind.
Hang in there.
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