I plan to be in bed in a few minutes so this is going to be a super quick update on our Will man!! This has actually been the best week we have had in months!! He started back at school on Monday after missing a month. He seemed alert and happy to be back. We love all his teachers and therapists and honestly I was excited to see them all again too :-) It is so wonderful to see William alert and smiling again!! He has really enjoyed this beautiful weather we are having in Rochester.
On Monday we had a swallow study which evaluates how safely he is eating. Unfortunately the study showed that he is aspirating ( going into his lungs) on liquids and purees. He lost some muscle control which is affecting his eating abilities. So, the g-tube is now the best choice for him to get his nutrition in a safe manner. We are in the process of setting up that surgery. He will still be able to eat smaller amounts by mouth for pleasure though :-)
As for his body temperature... he has been staying at higher ranges but still dipping down to 92.7 or so. At our upcoming consult with neurology we will discuss that further. Fortunately his heart rate and oxygen levels are staying within normal limits. A good sign...
Now, I am off to bed! Goodnight and thank you again for all your thoughts and prayers!
so happy to read this update Erin. You have been in my thoughts often!!! It sure sounds like you and William have had a MUCH deserved better week. With exception of needing the G-tube but I hope that ultimately that brings you a little less stress with his eating/hydration. Hugs!!!
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