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any others trached?

Chera - posted on 05/03/2009 ( 5 moms have responded )

My son is 3.5 years old and he has had a trache since 8 months old. I know it's not a common thing but wondering if anyone else has been down this road. After they put his trache in they did another surgery called a decompression surgery and at the time seemed to help his breathing issue. Our journey has been full of surprises and we haven't come across anyone else with his situation.

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Anne - posted on 08/03/2011

I know tis is a super old post but I just came across it. My daughter was trached at 4 months, she is 7 months old now. on facebook there are lots of moms with trached babies and children. If you havent found any by now, let me know :-)

Sara - posted on 03/28/2010

Hi i saw your post and had to write, i also have a child with trachey/spina bifida too hes 1yr 1mnth now got hes trachy at 5mnths. He had an MRI when they noticed he wasnt swolling they found he has Arnold Chiari Malformation II he also had decompression surgery, they say he has vocal chord palsy but im hoping some how it will come right, he has just recieved a speaking valve which we are trying this week. I have been reading your posts with Martina Ferguson and did not realise there was a surgery where you stitch the vocal cord to the side wall? so would that help with vocal cord palsy? it woudl be great to here from you...but hope all is going well

Martina - posted on 06/10/2009

Hi sorry for late reply dont get on alot!

Im not sure which operation our ENT Consultant was referring to. Going to see him on 18th so will discuss it with him. He is also wanting to up poppys trache size for the time being but my hubby and I, and her Speech Therapist are not happy about this. Poppy has a good bit of leakage round her trache enabling her to talk a little. She only knows a few words but she can make herself heard and known. She gets frustrated enough as it is without him upping the tube size and decreasing the leakage therefore stopping her vocal ability. Need to discuss either staying with the 3.5 or using a new one that has pin holes through it to allow leakage. SO many big decisions! I still live in fear of the chiari malformation returning! Hope your keeping well.

Chera - posted on 05/08/2009

the surgery where they stitch a vocal cord to the side wall??? Jaxon had the surgery for the Chiair Malformation a week after he was trached, and had the diagnosis of vocal cord paralysis....but now they have determined that is no longer the issue. We will probably be going for another MRI to see if there is scar tissue from the decompression...We were planning on another surgery...we opted no to have the one where they stitch the vocal cord back. But one where they take cartilage from his ribs, split his airway down the middle put in the piece and sew it all together...now they have decided to wait....Thanks for posting...nice to have someone with a similar situation to chat with...

Martina - posted on 05/08/2009

Hi my daughter is 3 and has been trached since she was 4 months. Hers was a result of Arnold Chiari Malformation. We had hoped it would be coming out but have just found out the trache has caused vocal chord paralysis so cant come out now.

We're considering an operation on the chords to allow the trache to come out.