Re: Worn Thin/ respiratory function - Amy

June 12, 2007

Man I hate that tone of voice doesn't carry through e-mail ;0) You are exactly

right and I didn't mean to say that traching was not a valid option. I was just

saying that it sounded like the pulmo was presenting that as the only option and

that it's not. When I said that you don't have to consider a trache unless he

was vent dependent 24/7 I meant for there to be emphasis on the have, as in -

you can, but you have other options.

I REALLY need to be careful how I word things *LOL*

Thanks for your kind comments about h. I think she is a trooper, but I'm a

bit biased ;0) She thinks I'm " paranoid " about her health - a true 11 year old

girl *LOL*

I'm assuming we'll see you next week? We'll be checking in on Wed evening. I

haven't been to a FSMA conference since the last one in Chicago, so I can't

wait!

Love and Hugs

Jeni

Re: Worn Thin

Hi all. I hope you do not mind me asking a question that I am struggling

with related to my 11 year old son with SMA 1-2. The pulomolgist is

concerned that his respiratory reserves are reducing and wants to discuss

our thoughts on trach/vent if needed in the future should his current BIAPAp

support not be enough at some point. I hear the pain and despair in some of

your emails. It breaks my heart that SMA is such a destroyer of precious

lives. I feel ambivalent about making major decisions with and for my son if

the respiratory decline becomes a present reality. How did you and your

families make decisions for yourself about how much technology support to

accept and at what point does it so interfere with quality of life that you

feel it has to be a no? I am overwhelmed just thinking about it all... Can

you tell me about the declines you have faced as older teens and adults?

Thanks!

Ronna

Recommended Posts