There have been many medical procedures and there will be many more to come for my little girl. One of her issues with her muscle weakness is having a weak respiratory system and mouth and throat muscles. Those two issues do not mix well together at all!
She has difficulty swallowing solids and liquids. This has interfered with her growth and makes her a good candidate for a g-tube. For about 4 years, her gastroenterologist has made me aware that the surgery of placing the g-tube, which is a feeding tube, would be in her near future.
Here we are 4 years later, and no tube yet. Don’t get me wrong, I know it is in her future due to her progressive muscle weakness, but I am happy we are not there yet. When the time is right and she needs it, of course we will have it done. But I know once it is placed, it will never be able to be removed.
It is more equipment, more to clean, and of course another surgery. She has breathing issues after having anesthesia, so I always make sure surgery is absolutely necessary before having her go through unnecessary respiratory risks.
She is doing well with her growth right now; the GI doctor did not even mention it at her last follow-up appointment. It has been a very long road with many changes and accommodations made to meet her needs. She must have short meal times, very “wet” foods, added supplement drinks, and now we have to thicken her liquids as well.
She loves “her” foods and loves to eat, so that has really helped. As long as she is healthy, happy, and growing, I am very happy to hold off on the g-tube placement, for now.
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As parents of a child with special health care needs, we often must learn little tricks to get things done. Some of these may seem obvious and some not, but they can be total game changers. Here are some tricks one parent has learned along the way.