Its amazing how the simplest things can be what gives you the greatest pleasure.
Think about small children at Christmas and Birthdays. What do they always play with the most? Its not the fancy clothes or the new trendy toys with the kung fu grip. Its the wrapping paper and the ribbons that most kids play with and enjoy the most.
The same is true with Noah and his progress.
We have been working for the past couple of years to get him to wear his speaking valve and we thought for a while that it would never happen. Finally over this past summer, literally overnight, he decides that it is something he wants to do and he starts wearing it. His speech improved remarkably over a matter of just a few weeks. It improved so remarkably that one of his speech therapists declared that he was caught up and another reduced his sessions to one a month. This in itself is a huge accomplishment.
However, Noah's tenure with the speaking valve didn't last very long.
When Noah went back for his October clinic visit they were so impressed with how well he was wearing the speaking valve that they decided to try giving him a full cap.
For my non-trach and vent friends the speaking valve is a plastic cap that goes on the end of the trach and has a small flap of plastic in it. it will allow air in but not out. So since speaking is a process of exhaling (try talking while breathing in) it allows him to speak nearly normally but he doesn't breathe through his mouth and nose. The cap is just a small plastic cap that covers the trach entirely and closes it off so that all breathing (in and out) is through the mouth and nose (like normal). It looks like the cap to a tube of Crest Toothpaste.
We tried to get the doctors to let us try a cap on Noah in previous clinic visits since he wasnt tolerating the speaking valve. They were not in favor and even though they humored us once and let him try it, they were quick to deem it "unsuccessful" and sent us away capless.
This time the doctor covered Noahs trach and he fussed about it but she decided to let Melinda try it and Noah was perfectly happy. They gave us a few caps (that I am sure they got from toothpaste tubes that they had lying around and just sterilized and then sold for $300 each) and sent us home.
If we were impressed with the progress Noah made with the speaking valve that was nothing compared to the explosion of speech and new behaviors and unexpected helpful side effects that came from using the cap.
His speech has gotten remarkably better. Words that he learned to say while wearing the speaking valve have become clearer and much more understandable and he now uses many two word phrases. He is still a picky eater but he is getting much better and eating much more that he used to. We are really starting to push the table food now. The most entertaining benefit is that he has learned how to yell. I mean really yell. His favorite thing to yell is "DIE!!!!". I'm not sure why or where he picked that up from. We don't frequently scream "DIE" in our house, well we didn't use to. Now we do because its fun to get him going. I'm sure we will regret that later.
The benefits of the cap arent just developmental either. We usually had to suction his trach once or twice a day (which isnt
that much) but now we will go days without suctioning him since he is
wearing the cap. Also, his oxygen saturation and CO2 levels are much higher when he sleeps. Typically when he sleeps his saturation would dip to the mid to low 90s at times (anything below 90 is bad) and his CO2 levels would drift up into the 40s (anything higher than 50 is bad). Now when he wears the cap most of the day his saturation stays 98-100 most all of the time and his CO2 stays in the mid 30's, both of which are excellent. I dont know the medical reason that the body works better when you breathe the way that God intended but it seems that he did know a thing or two about how to build a human.
So this year we have gotten our Christmas present early. It wasn't big and fancy. It was a tiny little (toothpaste) cap that came with a huge amount of progress.
