Update on Zadie

Zadie (on the right) with her brother,

Jonathan, and sister, Beatrix

It's close to a year since Zadie had surgery to close her trach stoma.  She's doing great!  She's in kindergarten now, and is in gymnastics and dance classes.  She loves to draw and play with her brother and sister.  Overall, she's a typical 5 year old.  Most people who just met her recently have no idea of everything she's been through, and I couldn't ask for more than that. 

In the fall, we started noticing that she wasn't hearing very well.  At first, we thought it was a "listening" problem, but then we realized it was more likely a hearing problem.  We took her to the doctor and found out that she had a terrible ear infection along with lots of fluid in her ears.  Interestingly enough, even with a raging ear infection, she never once complained about her ear.  She failed a hearing test and was put on some meds to help clear up the infection and fluid.  After a few more visits to the ENT, and the fluid wasn't clearing up very well, as well as another failed hearing test, we were able to get her an appointment with one of the pediatric ENTs from CHOP, but at their satellite office in Princeton.  Princeton is a whole lot closer than Philly! 

We were basically expecting to hear that the fluid was still there and that she'd need tubes again.  She's only had tubes put in once, at the same time as her palate repair at 11 months.  Kids with Pierre Robin Sequence often need tubes throughout their life.  Because of the way their anatomy is, they're more likely to have fluid buildup.  Zadie's been pretty lucky in that she has only had tubes put in once. 

The ENT looked in her ears and right away said they looked great.  He didn't see any fluid.  After we saw him, she was given a hearing test.  The test went great!  There were slight issues, but nothing of major concern, and the issues could have been just because she was on the tail end of an infection/fluid problem.   

Next up, some dental issues, but nothing major yet.  And she has a follow up appointment with her pulmonologist in a few weeks.  I'm going to ask him about a sleep study for her.  She hasn't had one since before she was decannulated and she does snore sometimes, so I want to make sure she's sleeping ok. 

Eye doctor visit

We took Zadie to see the eye doctor today to follow up on the bloody eye incident.  He checked out her eye, looked at the picture we took, and was still a little puzzled.  He said it was probably just from the infection (conjunctivitis) in her eyes.  He was puzzled especially because her eye wasn't bloodshot at all.  But, the good news is that her eyes look great.  Since Stickler Syndrome, a condition that involves eye problems, is often associated with Pierre Robin Sequence, she was due to have an eye exam.  Like all of the other doctors who have looked at her, the eye doctor didn't suspect Stickler Syndrome for her, just based on her physical appearance.  He dilated her pupils and checked her vision, and it's good!  She's feeling much better and her pink eye is improving!

Zadie's bloody eye

Zadie likes to keep things interesting.  After visiting urgent care with her yesterday afternoon for her respiratory issues and fever that wouldn't quit, we went home.  Her eyes were gunky and I mentioned it (and it was obvious) while talking to the doctor at urgent care.  She didn't say anything about the eyes, though, and didn't prescribe any drops.  Later on in the evening, while we were eating dinner, Zadie must have gagged on something and started throwing up.  For some reason the milk/Carnation she had been drinking for about an hour was a huge chunky disgusting mess that was practically choking Zadie as it was coming up.  As she was struggling to vomit it up. a blood tinged tear ran down her face.  Very shocking, to say the least.  I wiped it away and more blood appeared.  By the time she was done, she had a bunch of blood all around her bottom lashes and she had bloody tear stains down her face.

Sad baby crying bloody tears

I called her pediatrician, and even though it was 8 pm and I expected to get the answering service, they were still in the office!  After talking to her ped, he said he wanted to see her.  Meanwhile, I was frantically paging Dr. Google, looking for something to quickly tell me this was normal.  I couldn't even find anything close to what just happened to Zadie.

The pediatrician called a pediatric ophthalmologist, who was pretty puzzled himself.  He even said that it was odd and he'd never seen it before.  He wanted to see her in her office, and we're going tomorrow morning.  Zadie's pediatrician also said she had conjunctivitis (pink eye).  I'm not sure why the doctor at  urgent care didn't diagnose that.  He prescribed drops and said to irrigate the eyes really well before using the drops.  When I did it later, Zadie was really upset, crying very hard, and she had some more bloody tears.  Both times it happened, it was only from her left eye.  It hasn't happened again, thankfully.

After a lot of googling, BJ found the term haemolacria.  Most of the pages that come up when you search that term are only talking about how rare this condition is.  Wikipedia mentioned that it's sometimes caused by bacterial conjunctivitis.  So we'll see what the doctor says.  Never a dull moment, that's for sure!