Hello and welcome. My name is Kaitlyn Anne and I have Spinal Muscular Atrophy Type 1. Children born with SMA 1 gradually lose strength in their nervous systems and die, usually by the age of two. There is no known cure or long-term treatment. SMA not only affects the muscles that help me move, but it also affects those that allow me to breathe, swallow and clear my airway.
Tuesday, May 13, 2008
Very Sick
Well we now have a full out cold going on here. Kaitlyn woke up this morning and crashed a bit on the first round of cough-assist. Kaitlyn had to remain on Bi-pap today, as she couldn't maintain sats. We have cancelled our Body Brace appointment and have called our pulmonologist(who is fantastic). We wanted him to be aware that Kaitlyn was sick in case we needed him. He asked if we needed to bring her in, but we told him that we would try to stick it out at home. I was doing treatments every four hours and coughing her if her sats began to drop. It didn't really seem as though I was getting a whole lot out of her. Her sats were being affected but I couldn't hear anything in her lungs. She had increased secretions but we didn't seem to be getting any amount up when we coughed her. Kaitlyn still doesn't cough very well with the cough-assist. This isn't helping us any! We are just hoping that we can keep her home this time.
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