BEST DAY EVER! Passy-Muir Valve

It's the most wonderful time of the year!  Yep, I am signing Christmas Carols because that's just how gosh darn happy I am right now.  Lydia had her big 22q11 clinic today where she sees 5 different providers in one long day.  We packed snacks for mom and grandma and scored some diet cokes from the clinic.  Here's our report and then I'll get to why we're singing!

Endocrine:  All is good.  Taking the dosage of Calcium down a bit.  Going to have labs drawn in a week or two to check Calcium, Vitamin D and Thyroid.

Immunology:  All is good.  Going to have labs drawn in a week or two to check T and B cells.  If all is still good, we'll be able to get our 1 year vaccines which are live.  22q11 can cause Lydia to be immunocompromised, so no live vaccines until we're sure she's not.

Gastroenterology:  All is good.  Lydia is eating, digesting, tooting and pooping.  Yes, that's the conversation we had with her GI doctor.  

Cardiology:  All is very very good!  Dr. Shah was extremely happy with the EKG and echo.  All the repairs are looking good and there is nothing concerning right now with her heart.  We will visit again in 3 months and expect to see the bulky muscle that was getting bigger due to her heart working so hard start to relax and go back to a normal size.  Good news for now is that it's not any larger than before surgery, but it would have been had the surgery not worked.  We will still watch her valve and pray that it grows with her.

Ear Nose and Throat:  All is good.  Do you know why they are called ENT?  Because no one, not even they, can pronounce Otolaryngology.  Anyway, Dr. Arganbright, who I think very highly of, checked Lydia out, wasn't planning on scoping her and had no intentions of giving us a Passy Muir Valve.  WHAT?  That's about the only REAL reason we were there!  Lydia's main team that follows her said we are ready for Passy trials and that her ENT will take care of getting us started at this appointment.  Well, no one talks to anyone in that hospital, let alone between a clinic downtown and a clinic at south.  

So, I let them know my plan to get a Passy today so that the Home Vent team could see how she's tolerating it when we go in mid-May.  Huh?  Ever seen a bunch of doctors scratch their heads?  I was told by speech and OT that is something we usually plan for and that there are clear specific instructions to be taught on how to trial a Passy. So, I again tell them the plan and they leave to go call Home Vent.  

Fast forward maybe 30 or 45 minutes...in walks Dr. Arganbright with a Passy and a post-it note with instructions from our Home Vent team.  Muwhahahahahaha!  I don't always get what I want, but when I do it means great things for my kid.  We got a Passy, we got a passy!  Yes!  

A Passy Muir Valve is a tracheostomy swallowing and speaking valve that redirects air flow through the vocal cords and out the mouth and nose, mimicking a more normal respiratory process.  What it means for us?  We can hear Lydia!  She can make noises, real vocal sounds, not just sucking on her tongue and squeaks.  It was so awesome to hear her.  She really enjoys hearing herself and gets excited to make more noises.  She's just so gosh darn amazing.  :-)  Grinning from ear to ear.  

We will trial the Passy for a minute or two a few times a day.  We'll then move up to about 5 minutes a few times a day.  As tolerated, we'll keep increasing her time and frequency until she wears it whenever she is awake.  This is so huge!  She can start to communicate with us via sign language and voice.  The fear of her being speech delayed is still realistic, but we are on our way now!  

Other really good things the Passy will help Lydia with:

• Reduces Decannulation Time: The Passy-Muir Valves can be utilized as an interim step in the decannulation process by allowing the patient to begin to adjust to a more normal breathing pattern through the upper airway on exhalation. This allows the patient to gain confidence and the physician to assess for airway patency and can significantly shorten the decannulation process.
• Improves Oxygenation: The closed position "No Leak" design of the Passy-Muir Valves restores a more normal closed respiratory system. As a result, Positive End Expiratory Pressure (PEEP) is reestablished which facilitates improved oxygenation.
• Improves Olfaction: The Passy-Muir Valves improve the sense of smell by reestablishing airflow through the oral/nasal cavities during exhalation. This improved sense of smell may lead to an increase in sense of taste, appetite, and caloric intake which is important in the recovery process.
• Facilitates Secretion Management: The Passy-Muir Valve design improves swallowing and facilitates a stronger, more effective cough with oral expectoration of secretions. Evaporation of secretions occurs due to redirection of air through the upper airway during exhalation. May reduce suctioning needs and associated costs by restoring function of the bronchial hygiene system.

Passy Muir Valve info was found on this website if you would like to know more: http://www.passy-muir.com/