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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. |

08-25-2008, 06:53 PM
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Join Date: Jan 2008
Location: buffalo
Posts: 881
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Too smart for his own good!!!
So last week Ayden woke up crying,saying he didnt want to go to the hospital, I asked him why he thought we were going & he said he was sick,shure enough he had a fever.Tonight we were sitting at the dinner table & he had a look of sheer pain on his face,I know that face & I knew it was his belly again,but I didnt want to ask if it was his belly because if it realy was something else I didnt want to "lead" him into just agreeing with me.He kept saying "nothings wrong" his voice getting weaker & his face paler & he fell over in my arms & I said "im your mother you have to tell me whats wrong!" & he finally told me "My belly hurts!I dont want to go to the doctor" & I just held him & he fell asleep & he still is (this was around 6).So now im freaked out thinking if somethings really wrong hes not going to tell me anymore,b/c he doesnt want to go to the hospital.I gave him Benadryl an hour earlier on an empty stomach,so im hoping thats what caused the upset tummy & not the hirnea again.Any thoughts?How am I going to get him to trust me that everytime he has discomfort hes not going to end up in the hospital?Thanx........Angie
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 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!!  .Ava 2 years www.aydenava.blogspot.com
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08-25-2008, 09:29 PM
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Senior Member
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Join Date: May 2007
Location: Cochranton, PA
Posts: 4,870
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Poor Ayden. I wonder if you could sit him down when he's feeling well and discuss the issue. He is wise beyond his years and may surprize you by agreeing to a simple contract over when the doctor will be called. If nothing more it would give him some control over things. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel.
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08-26-2008, 05:43 AM
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Junior Member
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Join Date: Aug 2008
Location: england
Posts: 26
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Since I am new to the website, I like to look at people's blog and get to know more about them before I reply... It's funny how I have taken many pictures like yours (Ayden in the house, playing with the trains etc...).
What Ayden is doing makes me think about what Sol is going to be doing in the near future.
I thought that Karen's idea (the contract idea) was really good. Keep us updated. Hope the tummy pain goes.
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From Aline, French mom living in the north of England
Sol was born in December 05 and trached in April 08. He has severe subglottic stenosis, severe tracheomalacia, left bronchomalacia, a great sense of humour and loves trains!
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08-26-2008, 07:17 AM
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Join Date: Jul 2007
Location: Vienna, VA
Posts: 2,227
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Ayden is indeed very smart and as Karen mentionned wise beyond his years - I think that you need to explain to him that even though you always try to get him better you are not a doctor and that when he feels bad a doctor will help you to make him feel better and have some type of agreement that if Mommy can't make him better the doctor is who you need to talk or see together. I guess the older our children get the more difficult it become.
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps
https://www.babiesonline.com/babies/c/cedric1/
Last edited by My little figther : 08-27-2008 at 10:59 AM.
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08-26-2008, 07:30 AM
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Senior Member
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Join Date: Jul 2005
Location: VA.
Posts: 3,664
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Oh, i am so sorry that he is feeling sick again as well as knowing how he doesnt wanna tell you because he may have to go to the hospital ( that just breaks my heart) Kaylie too is really changing as far as hospitals and Docs, she was always so cooperative, but now she gets so upset and its so hard to watch it. In situations like our kids always having to go to the Doc for something is so hard to just say it will be ok, when they really know that sometimes it isnt. I hope that things get better .all i can offer is support i hope that helps
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08-26-2008, 08:40 PM
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,524
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Perhaps you're off to a good start that you were able to put him to bed tonight without a trip to the doctor. Maybe that will be reassuring to him. I think it's not a bad idea to make an agreement, like other said, about when you will call the doctor. That doesn't solve the issue of getting him to agree when it is time to call the doc or go to the hospital but maybe it'll reassure him enough that he will be more open about when he is feeling ill. I'm wondering if perhaps it could be the Benadryl but if it doesn't go away by morning you may have to talk to Ayden about calling the doctor.  Let us know what happens.
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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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08-27-2008, 10:42 AM
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Join Date: Jan 2008
Location: buffalo
Posts: 881
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Thanx everyone!Well his belly is still like a baloon,full of air,he rarely gets constipated,so I know thats not the problem.But we did have the talk ,I told him "Its different now that you dont have your trachy anymore,& you dont have to go too the doctor everytime you get sick,only if your really sick" & he did say "Dr.Tony?,hes my freind,OK"(Aydens ped.)His belly continues to hurt a bit,but im just not shure why..........The trach thing is still weird too me but he has been sick & none of them were as bad as they were with the trach,his chest gets junky & he coughes it up ,no problem & a few days later hes fine,with the trach it was knock down sick & constant nebs & suctioning!I could never imagine life without a trach & now I cant imagine one with anymore.............Angie
__________________
 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!!  .Ava 2 years www.aydenava.blogspot.com
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