Baby Steps forward - April 29

So I couldn't take pictures of the old trach...because it's gone (duh Mama!) but here are the product pics from their website:

Flextend - extends beyond the wings that hold the trach ties so that it's easier to access for suctioning and easier to clean around the wings:

Standard - sits more flush against the neck (no extra length beyond the wings):

The standard is a little more difficult to take care of and keep clean since your neck is already so small, but when has anything been easy with you?? The other problem with the standard is that when you're attached to the vent, the tubes pull the trach off center (look at the picture below) which pulls at the edge of your stoma and irritates it. With the flextend it gives us more room to situate the tubing and make it more comfortable. We talked Friday about ordering you a custom trach that's the right length on the inside, the right diameter and has the flextend - because right now (surprise, surprise) they don't make one with your specifications. Sigh.

Then this morning Dr. G said if it was ok with trach nurse and ENT she wanted the flextend back, and we'll just see how the length that we have does - so we switched it out again. Three trach changes in two days! Tomorrow the pulminologist wants to do a bronchoscopy again just to make sure everything is ok and (hopefully) put you on the smaller ventilator that we'll be going home with to start doing some trial runs. The trach care nurse wants to start doing some mobility training (aka getting you in a stroller with all of your stuff and walking around the unit) to figure out how everything will work best when we're out and about. ALSO - tomorrow the medical stroller company rep is going to come bring us a loaner stroller and measure you for yours so we can get that ball rolling! Depending on when you get to come home again, we might go home with the loaner while they finish up yours but at least that's moving forward! There are two different styles that I'll get to choose from - I got to see one yesterday and it was pretty snazzy! 

We turned your bed around so that the ventilator tubing is coming up from the bottom instead of over the top so that 1) it's not pulling as much on your trach and 2) you can get your right hand up to your mouth because you have not liked not having access to it! It's amazing how much one little change can completely turn your world around! You went crazy with the happy kicking - constant for about 15 minutes! 

So things are slowly starting to move forward again - you're doing great on room air (21% oxygen) so everyone is fairly confident that we'll be going home without oxygen; we're talking again about equipment testing for home care; the next step is just waiting for it to all come together and we can bust out of here!!! 

Patience, Mama - patience!