Re: **DEB**/all- trachea/vascular rings

[Guest guest]

I do have some questions for you. Today we saw Zipporrah's pediatrician and she gave us the report from the ER visit. It reads: There is a mild narrowing of the subglottic airway on the frontal projection as well as posterior indentation of the upper thoracic trachea. Occasionally this finding can be secondary to aberrant right subclavian artery and vascular ring. This is not low enough to suggest a true sling. Our ped. thought this is probably a mild malformation and not a dangerous issue. She is sending us to a pulmonologist on Tuesday next week and expects that he will want further testing to see how serious it is and if anything needs to be done about it. She noted blueness around Porrah's mouth that I have noticed quite frequently indicating air hunger issues and suggested I use the pulse-ox on her frequently and to use the oxygen as needed. I was wondering if you could tell me your experience with this issue and why you sons' was so serious. I would appreciate hearing about your sons' case. I feel a little more at ease after seeing the pediatrician but know she tends to downplay things as not as serious because she knows we have a lot to deal with already. I got two different feelings from her; that it wasn't too serious, and yet, that is or could be serious. What do you think? Darla: mommy to Asenath, Zipporrah, and the gang Re: prayers for Zipporrah and vascular rings Boy you have a good memory... I don't read every post lately (my husband got hurt at work and had surgery yesterday and will be out of work for three months..and our next baby/adoption is just around the corner and a half-a-millioin other things!)...so its good to put my name in the heading if you have more questions next time... Yes had a abberant right subclavian and 's son did also. although his affected artery might have been different. Anyway, when we adopted him he was almost seven months old and the foster mother, who was very seasons with him being her 60th foster child, told me he coudlnt' keep much down but she kept feeding him anyway. Being a first time mom, I didn't know what to think but not quite content to just keep feeding him and him puking it back it. So I tried making my own food, organic food and so on...nothing...he could only keep sweet potatoes and pears down most of the time...and his formula of course. He was gaining weight too! He was born weighing 3.11 and when we got him he was 22 pounds so I can see how no one thought much of it. The pediatrician finally suggested a barium swallow after I was at my wits end, and a very intelligent radiologist happen to catch it...the atery was laying accross his trachea and esophogus...we had to go to a cardiovascular surgeon. They treated it promptly b/c in his case, anyway, it was life-threatening. He was eleven months old when he had the surgery...he practically went straight to table food, and of course if you ever saw a picture (you can go to my website and see pictures from his last week even...click on 'meet my family') of him, you would know he didn't miss a beat in the eating department...always a BIG guy. I am happy to answer any questions you had...just put my name in the heading... deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comPlease contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla

So sorry to just be getting back to you but my husband was in a bad accident at work on the 18tha nd had surgery this week and will be in bed for two months, so life is crazier than ever!

I never saw a report on b/c that was back in the days when I was naive and didn't know any better so I wasn't in the habit like I am now of getting a copy of every piece of paper around. I think it depend on where the compression is laying too...I am sure its different in every kid.

oh yeah I just remembered about the breathing. With , when we got him he came with a pulmonaid and they told us he had asthma that he would likely outgrow. However, after the surgery they said that he didn't really have asthma that was the problem and he was probably find now. The only time I ever gave him breathing tx after that was when he had another illness (probably a mito red-flag but we didn't know then). We never had a pulmonologist until he was 6 or so after he got mito. (remember he had his first Sx at 5.5 and was diagnosed six months later, just eleven months before he died)

I dont' know if that helped but feel free to keep asking.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com

[Guest guest]

Darla

So sorry to just be getting back to you but my husband was in a bad accident at work on the 18tha nd had surgery this week and will be in bed for two months, so life is crazier than ever!

I never saw a report on b/c that was back in the days when I was naive and didn't know any better so I wasn't in the habit like I am now of getting a copy of every piece of paper around. I think it depend on where the compression is laying too...I am sure its different in every kid.

oh yeah I just remembered about the breathing. With , when we got him he came with a pulmonaid and they told us he had asthma that he would likely outgrow. However, after the surgery they said that he didn't really have asthma that was the problem and he was probably find now. The only time I ever gave him breathing tx after that was when he had another illness (probably a mito red-flag but we didn't know then). We never had a pulmonologist until he was 6 or so after he got mito. (remember he had his first Sx at 5.5 and was diagnosed six months later, just eleven months before he died)

I dont' know if that helped but feel free to keep asking.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com

[Guest guest]

Darla

So sorry to just be getting back to you but my husband was in a bad accident at work on the 18tha nd had surgery this week and will be in bed for two months, so life is crazier than ever!

I never saw a report on b/c that was back in the days when I was naive and didn't know any better so I wasn't in the habit like I am now of getting a copy of every piece of paper around. I think it depend on where the compression is laying too...I am sure its different in every kid.

oh yeah I just remembered about the breathing. With , when we got him he came with a pulmonaid and they told us he had asthma that he would likely outgrow. However, after the surgery they said that he didn't really have asthma that was the problem and he was probably find now. The only time I ever gave him breathing tx after that was when he had another illness (probably a mito red-flag but we didn't know then). We never had a pulmonologist until he was 6 or so after he got mito. (remember he had his first Sx at 5.5 and was diagnosed six months later, just eleven months before he died)

I dont' know if that helped but feel free to keep asking.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com