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On the Medical Front

From Mark:

I haven’t posted as much as I would like because I am self-employed and Getty’s diagnosis really set me back with work. Also, I have been trying to get up to speed on the medical front.

I am learning that we should be getting Getty a gastric feeding tube (G-Tube or “button”) soon. This is a tube that is inserted through the abdominal wall directly to the stomach for feeding. This is necessary in SMA babies because they will eventually lose the ability to swallow as the muscles weaken over time. Losing the swallow function can lead to food entering the lungs, which can cause pneumonia.

Although Getty passed her swallow test and is doing fine right now, the recommendation is to get the G-Tube now while she still has the strength to undergo the surgical procedure. At the moment, our intention is to get the G-Tube soon, but we probably will not use the G-Tube for feeding until it becomes necessary.

We are also learning about SMA respiratory and pulmonary issues and the three basic philosophies of care:

  1. Palliative Care: Generally speaking, palliative care means providing as much love, comfort, and support as possible while refraining from providing much or any respiratory support. It has been said the goal here is to add life to the child’s years instead of years to the child’s life.
  2. Non-Invasive Ventilation (NIV): This means using a machine to provide respiratory support via a facial breathing mask, without invading or penetrating the body.
  3. Invasive Ventilation (“Trach”): This means providing mechanical respiratory support via an invasive procedure such as a tracheostomy.

Kate and I continue to reach out to the SMA community for information, guidance, and support. People have been very kind and helpful, and we appreciate all of you. It certainly is a club nobody should have to join.

We are getting a better sense of how we feel about quality vs. quantity of life issues. We are learning more about the various options as we struggle to better define our own philosophy of care. Making decisions about digestive care, physical therapy, and nutrition is important, but defining a philosophy regarding respiratory and pulmonary care is crucial for SMA parents. Respiratory and pulmonary issues usually play the biggest role in establishing the quality of life of an SMA child.

These are not easy decisions to make, as each SMA case is unique and each SMA parent has his or her own values and philosophy of care.  There is no “right” choice and there is no “best” choice.

We get pits in our stomachs as we sit discussing the fate of another human being. It is particularly torturous in that it is our own daughter who just smiles, giggles, hoots, and coos, who knows nothing but love, and who places all of her trust and confidence in us.

All the choices available to us are horrible, horrible choices.

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  • Meri Phelps says:

    We are praying for all of you. Hopefully if you can visit, you can see how we have managed Aaron with NIV. Aaron is relatively strong, and although we were set up quickly with all of the “equipment” did not start using everything all at once. Aaron did not even get a feeding tube until he was 19 months old, and continued to eat orally until this spring (we still want to get him back to oral feeding, and plan to very soon). The BiPap was only used 1-2 nights/week until this spring, but it keeps him more comfortable at night. His saturations are great without it.

    As you said, only you and Kate know what is best for Getty. I can tell you as a mom, that the NIV option is manageable. When I hear Aaron laugh, talk, and show his personality in so many wonderful ways, I am willing to accept the respiratory management that we do for him.

    Do call if we can ever help out!

  • Colleen McCarthy O'Toole says:

    Hi Kate and Mark,
    Any decision that you make is out of the tremendous amount of love that you have for Getty. Please remember that we are always here for you to support that decision.
    Please give Getty a big hug from everyone at Families of SMA!

  • Takoa says:

    Mark-your last line, so heartbreaking and true. I know, as you two do, that everything you are doing is founded in the purest love for the most magical person to enter your lives. Thank you for continuing to educate all of us. The fight continues!

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