Monday, August 13, 2012

Meeting with ENT at CHOP...

BJ and I took Zadie down to CHOP today to see Dr. Javia, the ENT.  We had met with him in December and he prescribed the Passy Muir valve (PMV - speaking valve) at that time.  He wanted us to come back to check the pressures to make sure that it was safe for Zadie to use it.  She ended up being sick a lot from January to April, and then had her palate repaired in May, so we didn't get back to him.  Besides, we had pretty much decided to stick with St. Joe's for all of her care, so we didn't really plan on going back to CHOP.

Well, now that I'm not happy with the ENT at St. Joe's, and the craniofacial team there kind of dropped the ball on guiding us through all of this, we're kind of up in the air again.  I feel terrible that Zadie is still not able to make sounds.  My hope for the ENT visit today was make sure that the PMV was safe to use and then we could get working on it.  Unfortunately, since no one has ever looked at Zadie's airway, the doctor wants us to hold off on the PMV for now.  We have scheduled a bronchoscopy, which is a scope of her airway and is done while under general anesthesia.  That will be happening on September 4, which is just a few weeks away.  I'm anxious and excited to find out what's going on in her airway.

The doctors at CHOP are very fixated on doing a jaw distraction on Zadie.  We are hoping it won't be a necessary surgery, so we aren't entertaining the notion right now.  The fact that they are so gung ho about it is a big reason we shied away from  CHOP in the first place.  If we can avoid two additional surgeries (one to place the distractors and another to remove them), plus all the rough stuff to get through the procedure, plus all the risks involved, we would love to do so.  It's not clear to us at this point that it's a necessary procedure.  Maybe after the bronchoscopy, things will be clearer.  I am pretty bummed that today's visit didn't go as I expected.

We are considering getting yet another opinion on a course of action.  We are pretty much resigned to the fact that Zadie will have the trach at least through the winter, but we'd love to be on track to get it removed by the spring/summer of 2013.

On a positive note, Zadie had a hearing test, and did well, so I think the tubes are doing their job.

And on another note, I already know how lucky we are, but being at the Children's Hospital today, and seeing all the sick kids, I was reminded even more about how truly blessed we are.  Zadie's good and happy and I know this all is just a bump in the road.  I'm just looking forward to the day we can look BACK at this particular bump.

Thursday, August 9, 2012

One year at home...

Today is the day, a year ago, that Zadie finally got to come home from the hospital! Leaving her there when I was discharged was one of the hardest things I'd ever done! I always heard about babies having to stay in the NICU, and I always said I couldn't imagine how hard that would be. Unfortunately, I found out. What made it a million times worse was that almost every day when I went to the hospital to see Zadie, I'd see a beaming mom sitting in a wheelchair, holding her tiny bundle of joy, waiting for dad or whoever to bring the car around.  It really was like a knife to the heart to see that, every time.  It never got easier.  I often wished that there was some secret NICU parent entrance so we didn't have to pass by that scene every day.  I also realized how lucky I was that I got to experience that once.  I was that beaming mom holding my little Jonathan just three years earlier.  It was a long ten weeks, and I couldn't believe the day had finally come where they would release Zadie!

Zadie with one of her favorite NICU nurses, Patty

Zadie's neonatologist, Dr. Ruben, sending her off

Proud big brother with his baby sister home for the first time!

It was torrentially raining that day, and when we got home, the director of nursing of the home care agency and four nurses were waiting to be oriented on Zadie's case.  From that day on, we've had nurses in the house 16 hours a day almost every day.

So much has changed in the last year!  Zadie has grown, of course, and is happy and healthy and on the go.  She's been back in the hospital a few times.  She no longer has a cleft palate.  She's eating and drinking by mouth, although still uses her tube overnight (mostly because we haven't gotten the orders changed).  We are old pros at changing trach ties, changing the trach itself, getting it back in if it gets pulled out, changing her Mic-key button (feeding tube), putting that back in if it gets pulled out.

Maybe, just maybe, in a year from now, Zadie will have put a lot of this behind her!