It's always something

The last thing I feel like doing right now is writing a blog entry, but I promised myself that I'd write things when they are fresh in my mind so I can look back on this years from now and know how I really felt.  If I was telling someone this stuff in person, I'd probably sugar-coat the situation so they wouldn't think I was being negative mommy, or too pessimistic about it.  I've learned that some people don't want to hear how I really feel about this stuff...maybe because they don't know how to respond.  Or maybe it's me, and I don't want to seem too negative.  But that's what this blog is for.  To be real!

I just shared that Avery has to have a shunt revision, and we scheduled that for June 12th.  I am still dealing with all that comes with that surgery - shaving her beautiful blonde hair, recovery, her missing the last day of pre-school, and how it could potentially open a can of worms for new issues.  So, to add insult to injury, last night, John had noticed a discolored patch on her right cornea transplant, and I was so scared to look.  Maybe if I don't look, it won't exist.  So this morning, we had our weekly appointment with her cornea doctor and her 3-year well visit at the pediatrician.  I brought it up to Dr. Dunn, and unfortunately, it does exist.  It is a dry, rough patch right in the middle of her newest transplant.  We've had these on previous transplants, and in the past, this has led to scarring of the graft and inevitably, failure.  These patches form because Avery doesn't close her eyes all the way when she sleeps, and she rarely blinks.  To combat this, he puts in those tarsorophies (partially sewing her eye lids closed), and at home, we have to pay attention to them opening up.  Which they always do... So then we have to put in gobs of ointment to keep the surface of her eye moist.  Apparently this wasn't enough and within a week, this dry patch formed.

I know this doctor very well by now.  We've known him for three years and he sees Avery every week.  So I know when he's really concerned and disappointed.  I've seen this on his face too many times - disappointment.  He told me that he wants to get an Ocular Plastic Surgeon to more permanently fuse her eye lids together, and soon.  It's my understanding she'd still have a small opening to see out of, but this is another awful procedure that puts a giant pit in my stomach.  Having someone fuse my child's lids shut, when they've already been sewn closed so many times makes me worry how beat up her lids will be after all of this.  And will it even work?  If this dry patch persists, that graft will fail.  And then what?  We start to talk about final options, or worse, give up?  We are getting closer and closer to the end of the road each time something bad happens to her eyes.

So, like always, this new development causes scheduling problems.  She's currently scheduled to have an EUA on March 23 with both Dr. Dunn and her main ophthalmologist, Dr. Roarty (getting these two in the same OR at the same time is not an easy task, so we were looking forward to this).  If her pressure is still up (glaucoma), Dr. Roarty would be best to advise us on what to do.  As of this morning, Dr. Dunn wants to see her under anesthesia sooner, because he's also worried she may have some stitches loose in her transplant.  So, we are going under next week, and probably not with Dr. Roarty joining him.  And when the hell are we supposed to do the plastic surgery with this new guy?  It's not like we've never faced multiple surgeries in one month, but that doesn't make it easier.  As I leave the office, it feels like an elephant is on my shoulders.  There is so much to think about and process, and get in order.  I call John first and cry.  "I can't do this anymore."  I then drove across town to her pediatrician visit.  I caught myself glaring at another mom across the waiting room.  She had two little boys with her, and I assumed that they are totally healthy and only there for silly shots.  "Does she realize how lucky she is???"  Ok, she's probably a nice mom, so stop that, Ann.  We are called back and find out Avery doesn't need shots today (yea!), and that she's finally on the curve for weight (3rd percentile)... but still not even on the curve for height.  But she "appears to be well-fed," so no worries.  I can't really worry about how petite Avery is right now.

It's one of those days when I feel afraid of my own life.  This is the first day in awhile when I'm pretty hopeless.  How can I keep going on hope alone, when barriers like this keep coming up and making success with anything seem out of reach?  I'm so sad for Avery and the challenges she's up against.  How real it is that she may not have vision someday, and she may endure surgery after surgery for her whole life.  There.is.no.end.in.sight.  Like I've explained before, this isn't the type of situation (with her eyes or her brain) when surgery "fixes" the problem for long.  There is always something that could easily go wrong and ruin everything that we've worked so hard for.  And I can't help but feel like we dropped the ball, didn't do enough, didn't take good enough care of her.  

It's hard to feel part of the spinning world as a parent of a child with medical problems or special needs, so I'm very lonely.  Very few people "get" me, so I confide in very few people.  These days, it's my fellow Peter's Anomaly moms (or my therapist...).  This is my choice, so not asking anyone to feel bad for me.  It just makes sense for me and is easier to talk to someone who has been in my shoes.  Even if I've never met them in person.  I feel so awful after hearing bad news, and I can't expect anyone to stop their lives and get that.  I'm very grateful to have met good friends who have kids with Peter's.  I don't know how I'd get through this without them.

I apologize for the downer entry, but this is the point of a blog, not to sugar-coat, so I'm laying it out there.  Thank you for your support... I got such a moving response from people after my first two entries, and I really appreciate that.