The next phase...

We have now hit the last and final phase of Ali's "devices".  The cap. 

When a person has a tracheostomy placed, it can be, as I have learned, placed for a multitude of reasons.  Cancer, paralyzed vocal chords, pulmonary hypertension, Bronchyopulmonary Dysplasia (which Ali has), certain syndromes... and the list goes on and on.  While some trach-dependant people will always require the tracheostomy tube, others go on to a "magical place" called Decannulation.  You hear of it. You see pictures of it. You dream about it and pray for it. But it's never a sure thing until that trach is pulled and the Doctor gives the final o.k. to LEAVE it out!

There are many steps to move towards decannulation, but it seems that in general, it follows this guideline.

1. Diagnosis made/Trach surgically inserted.
2. Discussion begins on when trach can be removed!
3. Many months later, person with trach (and sometimes vent, as in Ali's case) comes home with nursing care, equipment, medical devices and the hope of it all going away just as quickly as it came.
4. "Nose" or HME given to person to keep lungs moistened. Otherwise mucous plugs can develop and cause an obstruction in the airway. EVERY time Ali has "coded" it has been due to a plug or the trach becoming dislodged or BOTH. This is a scary situation and is the ONE thing that grabs my attention every time I hear "that sound" coming from her.
5. Moving on however... Person does well, might potentially need airway reconstruction (or some sort of surgery) and is then tried on the PMV (Passey Muir Valve). This is a device that attaches to the trach and allows air to pass over the vocal chords, thus allowing the person to speak. It is TRULY  amazing to hear that sweet, sweet voice and the laughter!! Ohhhh....the laughter is incredible! 
6. Once the PMV has been tolerated (with or without the hole punch in the disc) you are then, FINALLY, offered The Cap. Oh, HAPPY DAY!!  We have FINALLY arrived at the cap!  The cap seals off the tracheostomy tube. It prevents the person from breathing in thru their "stoma" (or the hole in their neck). It instead forces the person to breathe in and out of their mouth or nose, ONLY! After so many years of breathing via the trach, that has got to be a crazy sensation for Alicen.
7. Once the cap is tolerated for (in our situation) a minimum of 6 months, we can then move towards decannulation.  There are many steps in the process of pulling the tube, but I cannot speak to those as I have not gone thru them with my daughter (as of yet). But, I can imagine it will blow my mind!  My husband and I have never NOT seen Ali with some sort of tube running across her face, into her mouth or down her throat.  To see our daughter free for the first time in over 4 years would be wonderful!

As you can tell, it is a pretty intense, exciting, stressful and amazing time! Scott and I know the Lord has Alicen in His hand and He knows when (and if) the time will be right to move forward.  We simply have to trust Him and follow her lead.  We are hopeful for a date of end of summer/early Fall. But again... it's all in His time.

I am going to try and be a bit more faithful to this blog. Honestly... I'm not taking much time to edit anything or consider spell-check or even "grammar check" at this point. I want to simply jot down moments that I can look back on and remember where we were at this point in our lives.  I also hope that the little bit that I do post will be helpful to others. I tend to be pretty straight-forward about things so I hope it's some concrete info for others in our situation.

I was planning to type a bit about trach care and such, but a 3 month old is beckoning me.  Computer or Eve?  She wins.  <3 p="">