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| are anyone else's children on ventillators? or have feeding tubes?|
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|General Discussion -> Development and Care||Message format|
|Our son has been on a ventillator since dec.2003, I was just wondering if anyone else's children have breathing problems? Robbie's scoliosis has shortened his rib cage, crushing his right lung and positioning his heart in the center of his chest, he has an S curve with kyphosis, with the curve at 74 degrees. I was just wondering if this was common with scoliosis.|
Robbie's back-2.jpg (5KB - 858 downloads)
Robbie's back.jpg (5KB - 791 downloads)
robbie-sept2005-funny face.jpg (39KB - 764 downloads)
|Nicki, Alex's Mom|
Location: Fort Wayne, IN
Hi! Robbie is such a cutie! Thanks for sharing your pictures!
I replied on your other post but wanted to say that my son also had a very severe kyphosis. He had a feeding tube surgically placed just before his first birthday. He very nearly got a trach, but instead we've been able to get by with a nasal BiPAP machine instead.
His photos are in the album here http://www.veptr.com/megabbs/photos/photo-main.asp?viewmember=3
|Michael and Kahri|
Location: Broken Arrow, Oklahoma
|Kaedra is trach'd, on a ventilator and has a g-tube. Hopefully we will be able to get rid of those things little by little, but she has them all right now!|
Location: Sterling, NY
|My 2 year old has a gtube but is not trached. Her left lung is compromised and her heart twisted in response to the scoliosis. Chloe also has a 40 degree scoliosis and 50 degree kyphosis curve: named kyphoscoliosis. Her cord is very thin and she does not walk yet. |
We see Dr. Emans in Boston at the Children's hospital. he's been wonderfully insightful and will be doing Chloe's growing rod surgery July 12. Chloe's ribs are fused and her torso shortened but we will not be doing VEPTR yet: the VEPTR depends on spine forgiveness. Chloe, with her narrow cord and even after growing rod, cannot chance any forgiveness (movement) of the spine. Otherwise, that movement might damage her cord.
I hope this helps. Your son is adorable and we all wish you the best life's rewards have to offer.
Location: Levelland, Texas
|Hi! My daughter is on a vent and has a g-tube. Kenzie has been on a vent since birth and has had a g-tube since she was 3 months old. We are hoping and praying she will not need these forever!! Although we are prepared for whatever God has planned for us. Your Robbie is a cutie!!|
Location: Bellevue, Nebraska
|My daughter was on a vent for a short time.Just this past fall she went on it for about 2 months, then on Bipap for another 2 months. We are anticipating her being back on it after her VEPTR surgery in July. Her left lung is compromised due to her scoliosis. Her lower left lobe moves no air. She has a trache and that is one of the best decisions we ever made for her. We thought at one point we would take it out but not anymore. This past sunday, we capped her and she starte turning blue. I am happy to see your son sitting up all by himself! Carly is unable to at this time.|
|Caroline is trached and has a G-button. I'd gladly share any info with you. Please feel free to write with any ques. |
Caroline's mom 7yr
Location: Monroe City, MO
|My four yr old, Kimberly, has had a g-button since birth and has been trached since 11 months. Her underlying disease is muscular dystrophy and this in itself is a risk to her respiratory status. The 90 degree curve does not help. However, we are doing capillary blood gases every three months to evaluate her pulmonary function and so far the scoliosis has not seemed to affect it. We also had ideas of untraching Kimberly, but now with this VEPTR surgery a real possibility, we've put that on the back burner. I will keep Robbie and your family in my prayers. Feel free to email with any questions. Mary.|
|Hi there, |
My son has been on a vent since he was 4 weeks old (August 2004). He was NG tube fed from then, and had a Mickey button and Nissen fundo done at 11 months. He is still on the vent and tube fed though he's attending a Feeding Clinic now and on low tube rations to stimulate his hunger. He's drinking more fluids now, but he's not sure about solids, and has a strong gag reflex. He has a form of dwarfism which gives him really short ribs. His lungs are very restricted.
I hope you can find something to help your adorable little boy. He's got really skooshy cheeks!
Location: Bloomington, IN
My 7 month old daughter, Marlee, is on a vent. She has been vent dependent since birth. Has had a g-tube since 2 months old. Marlee finally got to come home about 4 weeks ago. We are very excited to be home and very amazed at how well she is doing at home!!
|Zoe Alexis's Mommy|
Location: Abingdon, VA
Hi, my 9month old daughter Zoe has had a trach and Mic-Key button since she was 2 months old. She has been off the vent for 4 months now and is only on a trach collar, but she is still tube fed and refuses to take liquids by mouth. She will take a few bites of baby food if she is in a really good mood and it is SWEET:)
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