Disappointing

On Tuesday we went to DC to get Harlie a new ear tube. I guess since she's getting older, she's getting put later on the OR schedule, so we didn't need to be there until 8am. So we left our house at 5:30 - not too bad.

As far as her ear goes, everything is fine - no big deal. Her ENT put a tube in and she's good to go.

BUT, during the waiting for them to take her back to the OR, I got some time with her ENT and gave him a brief summary of her upcoming heart surgery and went over what I would like to happen (heart surgery in the spring, decann sometime thereafter). He asked me a bunch of questions about her PMV (speaking valve) use and I told him what our struggles are. He watched her play a bit and then left. When he came back he told me he wanted to do another bronchoscopy, just in case a granuloma or something was blocking airflow causing our struggles with the PMV and so he would have up-to-date information so he could talk to Harlie's cardiologist about the timing of everything. So I said sure, go ahead.

Without going into a ton of detail, it appears that her bone graft jaw reconstruction was unsuccessful. While she looks better, the real goal of the surgery was to "fix" her upper airway obstruction (her tongue base) so she wouldn't need the trach to breathe or a tube to eat. We were told that her jaw could recede, but our last check up with the plastic surgeon went so great. And her surgeon had a 100% success rate (well, before Harlie, I mean). So I just really believed that it would be a success. To think otherwise was too painful and unnecessary!

So, to say that we're disappointed is an understatement. When her ENT showed me the pictures from the scope - there's no denying it. I was shocked. He said that she needs either time for her jaw to grow, or more surgical intervention. Both requiring more time than I really want to think about. At the rate she grows, who knows when it would grow out. And she had that surgery in JUNE, with possible decanning a year later! So, clearly she will have the trach for much longer than anticipated. Which really isn't shocking in the world of trachs. That's why us trach moms don't daydream too much about life without the trach. And even though I said I knew it was no guarantee - being honest, I didn't really think that applied to us. I guess I won't make that mistake again, huh?

This also explains why she didn't want to wear her PMV as much as we wanted her to. The problem is that she can inhale just fine, but she can't fully exhale. So her ENT drilled a small hole in a PMV and gave it to me to try. We've been trying the new one and while she still takes it off (and hides it) she definitely tolerates it better and has already worn it for a much longer period of time.

So the next day I called her plastic surgeon's office and made an appointment for February. Now we need to figure out what can be done, if anything, and if so, when we can do it. And now my happy little dream of what this new year was going to bring us is...well, not going to come true. To think just 11 days ago I thought she would only have 1 surgery this year. Now we're looking at heart, spine and possibly craniofacial (which there's NO way she can have all of them done in one year).

While this might seem like a depressing post - I want to end on a positive note (it's what gets me through this crazy journey). While I dreamt of a naked neck and a nose breather, she can communicate. And her trach care has gotten "easier" in the sense that I feel more seasoned and comfortable with all her care. And I have great nurses that I love and that love Harlie. And hopefully, with the use of the PMV and future communication devices, she won't be held back developmentally because of the trach. So, this isn't the end of the world. Instead of dreaming of a naked neck, I'll dream of a major growth spurt that kicks her tongue base out of her airway! Which, actually, now that I think about it, is kinda the same thing. Oh well. Whatever works.

Take care,
Christy