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Our Pulmo Is Catching On To Us

From Mark:

The other day, we went to visit our pulmo post-op just to let him see how Getty was doing after her G-Tube and Nissen surgery. Just before the visit, I had been communicating with the SMA community about emergency protocols. Some had suggested getting a supply of oxygen.

We asked our pulmo for some O2.

“I’m reluctant to prescribe oxygen for home use. Some people … I prescribe it … and they use it when it’s not necessary.”

He gave a pregnant pause.

“But for you … I’ll do it.”

Eight hours later, a truck pulled up in front of our house. The driver came out and delivered two tanks of O2.

Also during our pulmo meeting, when we brought up getting a home bipap machine, he grew visibly frustrated. He explained that he was working diligently on securing the machine, that he was very upset with the supplier for not having it already, and he had been on the phone the past few days yelling at people to get our bipap.

He is learning that when it comes to helping Miss Getty, we are serious and aggressive. When we ask for something, we’ve done our homework, and there’s a good reason for it. Our pulmo is catching onto us and not only being responsive but also doing some advocacy himself.

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  • Teri Taylor, Charleston's grandma says:

    So glad your pulmo is understanding the needs of your little girl. It’s been a battle for us up in Reno, but ours is beginning to catch on as well!!! Good for you for doing the research and knowing what Getty needs.

  • JoEl Randall says:

    Good for you guys. I have learned over the years, that you have to be your own advocate. You DO have to be on top of everyone. Little Getty has the best team ever! We continue to keep you all in our thoughts and prayers.

  • Krista says:

    Hooray for being the squeaky wheel! I really feel for SMA families who don’t have a connection to the SMA community nor the ability to research, understand, and push like you guys do. So many would probably just sit back and take what the doctor says as the final word. Go Team Getty!

  • chevas says:

    I love hearing that some of the drs are listening & learning!!

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