On September 19, 2008, we made the decision to have a g-tube placed for Autumn.  Although this was a major decision, it wasn't that difficult.  Feeding Autumn was taking a very long time, and even then Autumn wasn't gaining weight at a healthy rate.  In the six months prior to surgery, Autumn grew four inches, but only gained one pound.  The g-tube surgery was done at the University of Michigan.


Our pre-op meeting with Dr. Ehrlich, the surgeon

Autumn drawing on the pants of one of the nurses

Autumn was so brave as she was wheeled off to surgery.


One of the issues that made me very nervous was intubation.  Kids with SMA are at very high risk for complications, not only from anesthesia, but intubation/extubation itself.  I was reassured that we had a good team of doctors and anesthesiologist working with Autumn who were familiar with SMA.  After surgery, Brian and I were quickly ushered into the recovery room as soon as Autumn woke up.  We brought along her CoughAssist machine just in case Autumn had any problems clearing her lungs or her oxygen saturation numbers dipped too low.  As it was, our fears were unfounded, and Autumn had no issues immediately after surgery.  The U of M staff was very accomodating, and we had the honor of demonstrating how the cough machine worked to several of Autumn's nurses before she went to bed.


Reading to Autumn right after she woke up.

Autumn relaxing in her room

Doing a cough treatment before bed.

Our oh-so-tired Autumn

Calling to let everyone know she is doing just fine

The only time Autumn cried after surgery--when she was getting her I.V. out.

          Having a tube placed was probably one of the most important things that we could have done proactively to help Autumn.  She is fed through the tube at night and during naptimes with a mixture of Vivonex Pediatric Powder, water, various juices, and other supplements.  She also gets calcium and other medicines through her 'tubie', so she never has to taste any icky medicine if she doesn't feel like it.  During the day, she is free to eat whatever she likes, without pressure from Mommy and Daddy to eat more.  During illness or whenever she is unable to take anything by mouth, we will be assured that her nutritional needs will be met, so her body will be able to better expend energy wherever it is needed.

Autumn at home, two days post-op.

Autumn with Grandma Marcia in her room

Enjoying a fruit basket from Uncle Jeff and Aunt Kerry