Happy Dance Time! - April 3

What a crazy week (on top of a crazy month) it has been! And guess what, things aren't going to slow down for a while now!!!

After the exciting ENT visit last week, getting your airway evaluation scheduled, and taking care of some other things on Friday, you and I headed to the EYL planning retreat to get ready for Camp this summer! We had a great, but busy, weekend and you did pretty good - aside from not taking very long naps (and not at all on Sunday!) and getting super cranky and clingy as I was trying to get all of our stuff packed and loaded. We got home Sunday around 5:00, it took me almost 45 minutes to get all of your stuff set back up because you WOULD NOT let me put you down and then I put you in bed for your 6:00 feed and you were out by 6:15. Whew! Overall, it was a really good trip and we got to see some old friends and had lots of fun :)

On Monday, you had your 15 month check up - everything looks good! You are low on the charts for weight, but you always have been. You are nowhere on the chart for height, because we've never been able to get an accurate measurement with your legs straightened out (and you especially didn't want to straighten them out on Monday!). She was excited to hear that the ENT is ready to start weaning you off the vent as soon as the Pulminologist gives the thumbs up! You did have to get two shots, but then the nurse gave you a new rubber ducky so you were ok with that.

Tuesday morning, we went and took more pictures with Aunt C. Here are a few that I snapped of the process - I can't wait to see the real shots!

We got back from pictures in time for you take a nap (which you didn't) and then head to the Pulminologist office...where you got 5 more pokes. You had to get your last round of Synagis (RSV prevention) and they had to take blood and weren't able to get a good stick on your foot so that took three times. Needless to say, you were not to thrilled with that process. And you were tired. And didn't want anyone but me to hold you. We left the office with semi-decent, ok, good, great FANTASTIC news -

Tuesday night we started the process of weaning you off the vent at night time!!!

Here's the plan:
- Starting Tuesday: one week of the vent being on bi-pap mode (similar to when we started weaning you during the day time; we turn the settings to positive pressure only, no breaths - so if your breaths dropped below 20 per minute, it would not kick in for you); the night nurse will be carefully monitoring your O2 level (so far you've stayed 97-100%) and your breath rate (normal!)
- Next Wednesday morning: airway evaluation; clean out your ears and possibly (probably since your last infection is now on round three of antibiotics and being too stubborn to go away) insert tubes; talk with ENT about downsizing your trach.
- Starting Wednesday night: NO VENT at night. We will have to use the trach collar setup (that you hate) to make sure you are getting enough humidification, but NO VENT! At some point during this part, we will downsize your trach. This will allow for more air to pass around the trach so you can get used to breathing on your own, while it's still there if needed.
- Mid May: we cap the downsized trach so that you are not breathing through it all. This get you used to breathing on your own, through your mouth and nose, with no assistance from the trach.
- June 7: Sleep study
- Shortly thereafter: (pending good results) DECANULATION. NO MORE TRACH. DONE - GOODBYE - ADIOS - Throw the vent out the window!! (ok maybe not that last part...)

If everything goes as planned (and as the ENT mentioned, Lexi never does anything as planned) you could be done with the trach and vent in less than three months. The original prognosis was two to three years, and you could be getting rid of it in 13 months. Talk about not doing things as planned!!!

We have some other appointments scheduled throughout the process (Nutritionist, Developmental Clinic, new boots from Shriner) but the next months will be focused on a HUGE leap forward!