Well, Toby had his first myelo clinic appointment today. We saw a physical medicine doctor, occupational therapist, physical therapist, urology nurse, pulmonary doctor, and developmental pediatrician. The visit today took 6 hours, and yes Toby, the nurse, and I are exhausted! Most of the doctors just completed initial assessments on him. The OT and PT gave us ideas for helping his development - helping him move his legs more, develop better head and trunk control, and focus more with his eyes. One thing he doesn't do is keep your gaze for an extended period of time; his eyes have a tendency to jump around quite a bit. I was also concerned that he had club feet, and he doesn't !! Yeah!! The pulmonary doctor was kind to come and visit us so we didn't have to set up a separate appointment. They did a chest x-ray and a blood gas. His blood gas came back great, which means the ventilator is doing what it should. The chest x-ray did show his lungs aren't expanding to their full volumes. The major reason for this is he tends to have so much air in his bowels/belly that it pushes up on his diaphragm, which pushes up on his lungs. Not good, so we're trying some new techniques this weekend to help keep his belly soft. His tummy was very large and hard today, and as he was breathing he was really retracting in, so that isn't a good sign. Please pray that the air in his tummy will resolve. (One cause might be because he receives his food in his small intestine, but I'm not sure what they can do about this). We will see. We will call the doctor on Monday to let him know how he did this weekend with some of the things we are trying. Thank you for praying. It's been a long day! (April 27, 2007)
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