We. Have. A. Date.
Not as early as we had hoped, but after three years of waiting it’s soon enough.
On August 2nd Faith will undergo laryngotracheal reconstruction. We are still unsure of all of the details but found this great website that describes the procedure:
Faith will need both an anterior and posterior graft (from rib cartilage). We have been told the recovery for this will take months and to expect about a month being inpatient (now you know why we were hoping for an earlier date- our schools begin in the second week of August). She will be sedated and intubated(in an induced coma) for 7-10 days post surgery.
This surgery will be a big deal.
Not breathing through her neck and being able to vocalize will be an even bigger deal.
The scheduling of this surgery is not without controversy. On one side of the coin some feel she is not yet stable enough to go through such a lengthy surgery and the risk of her getting sick and needing intubation may result in a trach being placed again (and in the doctor’s own words, “undoing all of the work of the surgery”.)
The other side says, why hold back on “what if” scenarios. What a shame to would be if we elected not to do the surgery and she never needed the vent again?
In the end we choose to have FAITH. We choose to give her every possible chance for success that we can.
Yes, she will still need oxygen (that's an entirely different issue) and yes, trying to keep a nasal cannula on a roving toddler will be difficult but her being able to make noise when she cries, laughs, and to be able to learn to speak will be well worth it.
So until then we are going to enjoy every ounce of summer we can. We have no doubt this one is going to be very memorable!
Thanks for checking in!
Jen & CO
PS: As many of you know I am horrible at keeping up with non-work related e-mail. A fellow trach mom e-mailed me a few weeks ago and I accidentally erased it before I was able to respond. If you are that mom I'd love to talk to you more. Please e-mail me at firstname.lastname@example.org (I have much better luck with that one) :)