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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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#11
05-17-2004, 07:49 PM
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Doug,
Welcome to this wonderful site!! Its a great source of support and knowledge to all new trach parents. Your son is a cutey pie!! Hopefully, he will be decannulated soon. Best wishes, Whitney
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011! 
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#12
05-18-2004, 08:56 AM
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Olga,
We have already done one laser surgery even before Mason was trached. We are not removing the whole hemangeoma, Doctor Bowman is just trimming away the part that is blocking the airway. We will do this every 6 weeks so we can keep it clear and know when it stops growing. We are not getting into the wall of his throat with the laser at all. It will take longer to run it's course this way but it is much safer. We kept the growth of the hemangeoma under control for nearly 4 months with just the use of steroids. At one point we actually thought he might just have beat the thing. We got to spend nearly 1 whole month with him the last 4 weeks with no breathing problems at all. Then the steroid taper was done and 2 days later we were back in the ER. Friday last week when we had to decide to do the trach, it was devistating to us. We thought our world had come to and end. What we didn't know is how well Mason would adapt to it. Wow waht a trooper he is. He gives us all the strength we need to get through this. And here we were thinking that we would have to be his strength. He is starting day 5 with his trach and Jarita and I are learning all the care we need to do. The first trach change comes tomorrow. Sorry for the long post, I get kind of windy sometimes. Â*  Doug Heidebrink
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Doug, father of Mason. Hemangeoma in Trachea. Had Tracheostomy 5-14-2004 at 4 months of age. Decanned 8-19-05. Closure Surgery 5-5-06.
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#13
05-18-2004, 11:59 AM
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Doug, Mason is a cutie and you will see how "easy" life with a trach can be as opposed to life always worried about a stable airway. We have all been there so any questions, frustrations, etc just come here and ask, vent, whatever. It's a great family! Deb
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Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
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#14
05-18-2004, 02:08 PM
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Welcome and thanks for sharing your photos!!! He's beautiful!!! Kris
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Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
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#15
05-18-2004, 07:49 PM
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Welcome!
I know it seems overwhelming right now, but it will get easier and believe it or not - become second nature to you and your family. This board is absolutely jam packed with help.
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Mom to Jack, born with a giant omphalocele on 6/30/02 at 32 weeks. Trached 12/23/02 due to secondary pulmonary hypertension. Decannulated 6/2/05! Strong, strong little man!!
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#16
05-19-2004, 10:36 PM
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Mason is adorable... welcome to the board!
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Amanda Mom to: Anthony (5 yrs. old) and Jadyn (2 yrs. old) Jadyn's page on tracheostomy.com
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#17
05-19-2004, 10:51 PM
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Welcome to the board. Mason is adorable. I have found this board very helpful. Everyone here has been wonderful.
Misty
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