A Voice

I am Noah's voice. I speak to doctors, specialists, therapists, nurses, anyone that will listen. I want the very best for both of my children so this is my job. And I love my job.

I tend to get very nervous in the days leading up to a big appointment like Trach Clinic. At Trach Clinic we meet with a large part of his care team. Pulmonology, Speech Therapy, ENT, Dietitian. We go to clinic about every 3 months so this is a really great opportunity to see everyone face-to-face and hammer out the details for Noah's plan of care. I usually come armed with a list of questions, concerns, and ideas to bring to the table. They only know what I tell them so they rely hugely on my information about what Noah is like at home in order to serve us more completely. Our appointment today went really, really great and we got a lot of things accomplished from my list. I'll break it down according to each specialty.

Pulmonology:
Yesterday Noah began a new medication called Colistin. It is in inhaled antibiotic to help decrease the amount of secretions in his lungs. It is not a common script so we had a heck of a time getting it filled, but we got it. Along with that, the doctor increased his dosage of Pulmicort which is an inhaled steroid. We will also be getting a CPT vest. It is a little vibrating jacket that Noah will put on twice a day to help loosen the secretions in his lungs so we can suction them out better. We are also adding another dose of his Robinul medication so he will get that three times per day instead of just twice. Robinul is a medication to help dry up his saliva. The doctor is definitely very interested in Noah's sleep study results so we need to get that scheduled within the next month if we can. He also wants to see Noah for another appointment in about a month to make sure all of his medications are doing what we want them to do.

Dietitian:
Noah weighs in at a hefty 26.9lbs and is 31in long. He's basically a giant. He is off the charts for both weight and height now. He is definitely becoming more proportionate which is wonderful, he's just a big kid all around. We are going to start adding an extra ounce of water with every feeding to make sure he is getting enough water per day. At our next appointment in July, Noah will be 1    OMG I cannot believe it    so we will start him on a blenderized diet and he will switch from his infant formula to a formula called "Compleat" which has all the vitamins and minerals that he needs and is made up of chicken, peas, carrots, and other real stuff.

And now for the most exciting thing of my whole entire life...

Speech Therapy:
I asked if we could try Noah with a speaking valve. A valve goes on the end of his trach just like his HME. He breathes air in through the valve but then he exhales through his mouth and nose. It allows him to make noise but it also has so many other benefits. Because the valve partially normalizes the airway by forcing the air to go out of the mouth he will hopefully be able to start swallowing a little better with it on. It will also help desensitize his airway the more we start to use it. I've done a lot of research because I really wanted to let him try talk or, at the very least, make some noise. His ENT said he had no problem with it so when the speech therapist came in with one I was beyond excited. They had it hooked up to this little meter looking thing and it would show us if he was trying to push too much air out through his trach or if it was going up into his mouth like it's supposed to. They put it on him while he was sleeping which really made him mad but he did so well! They cleared us to use it with him a few times per day for up to 10 minutes. We tried it as soon as we got home. Here is a wonderful video of the most beautiful voice in the world.

I am so proud of my sweet little Noah and I am so ecstatic that we get to use the valve and hear his wonderful singing voice. Once again, thanks for loving on us!