Re: Down Syndrome and Intubation

[Guest guest]

Hello,

My daughter, Sara, who is now 17, was diagnosed with a vascular ring, which her cardiologist is recommending be repaired. She is scheduled for surgery at Seattle Children's a week from this Friday. I searched out a less invasive way for this to be repaired (microcameras, laporoscopy vs. going in through the left side of her chest). Regardless, she still needs to be intubated for the procedure. Has anyone had their child intubated during a surgical procedure and does anyone have advice as to questions I need to ask of the anesthesiologist?

I am major getting the pre-surgery jitters!

Thank you,

Marcia Rietmann

Mom to Sara (ds) and 17 and Lucas 21

Marcia Rietmann

rrietmann@...

(541)815-4828

(541)548-2136

[Guest guest]

Marcia,

X-rays for atlantoaxial stability (or instability). If the cardiologist doesn't feel it's important, call and talk to the anesthesiologist. Request the x-ray be done the day before.

I had Cate's X-ray taken the day before she had her tonsils taken out.The ENT surgeon did not feel it was important, but the Anesthesiologist did (he also understood my concern and was wonderful....he had a child with special needs).

I had the book "Medical and Surgical Care of Children with Down Syndrome" and used it as reference. Wishing Sara the best!

- Koz-Riddle

Mom to Taryn,9,Cate,8 (ds) and Ella,6 (ds)

To: Multiples-DS Sent: Wed, March 14, 2012 11:59:33 AMSubject: Re: Down Syndrome and Intubation

Hello,

My daughter, Sara, who is now 17, was diagnosed with a vascular ring, which her cardiologist is recommending be repaired. She is scheduled for surgery at Seattle Children's a week from this Friday. I searched out a less invasive way for this to be repaired (microcameras, laporoscopy vs. going in through the left side of her chest). Regardless, she still needs to be intubated for the procedure. Has anyone had their child intubated during a surgical procedure and does anyone have advice as to questions I need to ask of the anesthesiologist?

I am major getting the pre-surgery jitters!

Thank you,

Marcia Rietmann

Mom to Sara (ds) and 17 and Lucas 21

Marcia Rietmannrrietmann@...

(541)815-4828

(541)548-2136

[Guest guest]

Our only experience regarding surgery is this, some people with Down syndrome have slower metabolisms and so their uptake of the anesthesia can be slower AND their outgassing of it can be slower. That means, it doesn't "take" as quickly and they don't wake up as easily. The latter can be VERY scary if you don't know it's coming. I found this out the hard way with my boys when they had surgery. Good luck. I hope you get lots of great information to help you feel informed. I'm sure she'll do great. Best Regards, Maggiewww.walkonthehappyside.wordpress.com To: Multiples-DS Sent: Wednesday, March 14, 2012 12:59 PM Subject: Re: Down Syndrome and Intubation

Hello,

My daughter, Sara, who is now 17, was diagnosed with a vascular ring, which her cardiologist is recommending be repaired. She is scheduled for surgery at Seattle Children's a week from this Friday. I searched out a less invasive way for this to be repaired (microcameras, laporoscopy vs. going in through the left side of her chest). Regardless, she still needs to be intubated for the procedure. Has anyone had their child intubated during a surgical procedure and does anyone have advice as to questions I need to ask of the anesthesiologist?

I am major getting the pre-surgery jitters!

Thank you,

Marcia Rietmann

Mom to Sara (ds) and 17 and Lucas 21

Marcia Rietmann

rrietmann@...

(541)815-4828

(541)548-2136

[Guest guest]

Hi Marcia,

I have twins with DS and they have had several minor surgeries over the years that have required intubation.

My thoughts:

If you can, get the name of the anesthesiologist from your doctor beforehand and make him/her aware of Sara's having DS and any other situations requiring extra attention. In that vein, if you have had any AAI/AOI testing X-rays, you should make sure to point out whatever those results were. He/she should tell you that they always treat the neck carefully in any patient with DS because of the potential for AAI/AOI.

If the situation doesn't permit speaking with the gas-passer well before surgery, you should get a call from him/her the night before confirming the no eating / drinking timelines.

In any case, you should meet him/her before the surgery. For us, this has been the case EVERY time. If it isn't, then you should require it. Don't wait until just before the surgery. If you haven't spoken with him/her by the time you check in that day, make that your first priority and make sure every person you talk to knows you want to see him.

I saw some comments about our kids being slow to rid themselves of the anesthesia - we have experienced that sometimes, and other times we haven't. I think that may depend on the individual and how they react to each drug.

Good luck,

Mike Grossman

Sam and , 15

To: Multiples-DS Sent: Wednesday, March 14, 2012 11:59 AMSubject: Re: Down Syndrome and Intubation

Hello,

My daughter, Sara, who is now 17, was diagnosed with a vascular ring, which her cardiologist is recommending be repaired. She is scheduled for surgery at Seattle Children's a week from this Friday. I searched out a less invasive way for this to be repaired (microcameras, laporoscopy vs. going in through the left side of her chest). Regardless, she still needs to be intubated for the procedure. Has anyone had their child intubated during a surgical procedure and does anyone have advice as to questions I need to ask of the anesthesiologist?

I am major getting the pre-surgery jitters!

Thank you,

Marcia Rietmann

Mom to Sara (ds) and 17 and Lucas 21

Marcia Rietmannrrietmann@...

(541)815-4828

(541)548-2136