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Stacy called me back to our bedroom last night and at first I was worried something was wrong. When I walked in she said,”watch him”. Well this video is what I found. Greyson is big now on grabbing things that his hand finds and putting them in his mouth. I’m not sure if this was a good idea but he sure enjoyed chewing on his cuff! It was quite comical.
So I know I haven’t posted in a couple days, but what can I say? Greyson continues to be a pretty normal kid (with quite a bit of baggage!). Today we went and saw the pulmonologist and had a great visit. He seemed very pleased with his progress and we came away ready to take the next steps. First, they gave us a passy-muir valve to use when Greyson is awake. This is a basically a one way valve that goes between the vent circuit and the trach. It allows the breath from the vent (or air if he’s off the vent) to go in but prevents it from going back out. This means all of the breath has to be exhaled through the mouth or nose. Why is this important? Well the trach is located below the vocal cords. As I’ve commented on before when the cuff is up (or full) not much air can get around the trach When the cuff is down air can excape and Greyson makes some noise. Well with the passy-muir valve all the air goes past the vocal cords which means Greyson is a lot louder and can make noise much easier. It also alows him to cough and sneeze out his mouth and nose. After we put it on him he couphed a couple times and startled himself (it feels different to him with this valve). He got scared and started crying. Stacy and I were laughing so hard because it was such a different sound than we have ever heard before, even when he was off the vent in the NICU. So that is a pretty cool thing.
They also changed a vent setting so now Greyson determines how long his breaths will be, instead of having to take the breath the machine tells him. This is a minor change but should be nice for Greyson’s comfort with breathing. We are also beginning to wean him some more off the ventilator. He has been at 15 minutes twice daily for a couple weeks but now we are increasing his time off the vent by 15 minutes twice a day until we get to 3 hours twice daily. Yep, that’s 6 hours a day total off the ventilator! This is very exciting news. Of course this is dependent on Greyson doing well but we see no reasons at this point why he wouldn’t be able to handle the increases everyday.
The final thing from today was that the Dr. said it would be OK to start working with a therapist and have Greyson start taking some food by mouth to get him ready for the swallow study. In case you forgot he needs to have a swallow study done in order to see if he can eat by mouth safely. In order to have the swallow study he needs to be able to take 2 oz by mouth. Well we don’t know if he can take 2 oz by mouth since we don’t give him anything by mouth because we don’t know if it’s safe till we have the swallow study. Can you see why this gets complicated fast? Anyway now we have permission (from a real Dr!) to begin working on this.
We also learned today that Greyson is now 18.4 pounds and has grown longer. He is also getting a big head from all his fans (OK maybe that just means his head has grown too, which is good!).