ENT visit

We took Zadie to CHOP in Philly today for a visit with her ENT, Dr. Javia.  After her bronchoscopy and sleep endoscopy in March, he said there was a possibility that the tonsils need to come out, since they were pretty large.  This was pretty disappointing since she was just in the OR in September to have her adenoids removed.  Apparently, at that time, the tonsils were so small that he didn't feel they needed to come out.  Recovery from a tonsillectomy is much worse than from just an adenoidectomy, and I do appreciate that he only does what he feels is absolutely necessary.

However, now that Dr. Javia has confirmed that he feels she needs a tonsillectomy, I do wish he had just taken them out in September.  Two birds, one stone?  She's scheduled for the tonsillectomy for May 6, which is just over three weeks away.  After that, we'll be able to schedule her for another sleep study to see if there is any improvement to the obstructive sleep apnea.  Since her airway looked beautiful in the March scope, if the tonsils don't prove to be the problem, then hypotonia of the upper airway will be the likely culprit.  There is no surgical repair for hypotonia, it is just something that Zadie will have to outgrow.  Since there's no other reason for the trach right now besides the OSA, Dr. Javia said that decannulating (removing the trach) and putting her on a CPAP mask is a possibility.  She would have to get used to the CPAP mask before decann, though.  I'm not sure how she'll do with a mask on her face!

I hate to put Zadie through another surgery!  I know it's for the best and she won't remember much (the older she gets, the less we can say "she won't remember any of this!") but it's just no fun.  The older she gets, the worse things like surgery and hospitalizations and blood draws get.  But she's a trouper and soon enough, this will be in her rearview mirror.

Lots of updates!

Zadie had her bronchoscopy/sleep endoscopy in March at CHOP.  Dr. Javia said her airway looks great, with no obvious issues!  This is good news, but also bad news in a way.  At least if there was an obvious issue, there might be an explanation for her obstructive sleep apnea (OSA).  But, as it is, there are no clear reasons.  Dr. Javia did say that her tonsils were bigger than the last time he saw them (which was when he removed her adenoids.)  That's the last possibility for a cause for her OSA, other than just a hypotonia of her airway, which is something that can't be surgically corrected, she'd just have to grow out of it.  We are taking her to see him this coming week so he can look at her tonsils again and think about having them removed.  We'll be pretty upset if she has to go under for another surgery, when he could have taken her tonsils out when he was in taking out her adenoids in September, but at the time, he didn't think it was necessary.  Dr. Javia also said that there is the possibility of decannulating (removing the trach) and putting Zadie on CPAP.  We are very interested in this possibility.  I can't imagine it will be easy to get her to wear a mask on her face to bed, but I know other kids do it.

A couple of weeks after the CHOP visit, Zadie developed what looked like a pimple on her belly, right under her Gtube site.  It got bigger and redder and I ended up taking her to the doctor.  He took a swab of the pus inside and put her on antibiotics.  It turned out to be a staph infection.

Staph infection by Gtube

She ended up having a reaction to the antibiotic, Bactrim, so we stopped that, but her pediatrician felt that she'd been on it long enough and it was ok to stop.  

Red cheeks - reaction to Bactrim

Rash on chest that spread everywhere - reaction to Bactrim

Meanwhile, she was weighed when she went to the doctor for the staph infection, and she had gained weight since January, when she went to see the GI!  Between the weight gain and the fact that the Gtube site was getting yucky (and, I imagine, contributed to the infection), we decided to pull out the tube.  We waited until morning so that her stomach was empty, and just pulled it out.  It was a very exciting day.  I wasn't sure what we'd have to do to keep it from leaking, but it closed up very quickly, within a few hours, and we never had any leakage from her stomach.  Since she had some granuloma (scar tissue) built up around the site, it's not looking the prettiest, but I'm hoping as she grows that the scar tissue will lessen and be less noticeable.

One tube down, one to go!

In other news, Zadie has had two evaluations with the child study team from the school district so far.  One was with the speech pathologist and the other was with the learning consultant.  From what I understand, she did very well in the evaluations, which is great, but it also means she most likely won't qualify for the district pre-school.  It is pretty impressive that a kid who has had so many factors against her barely even has a speech delay.  Both Pierre Robin Sequence and having a trach are major causes of speech delays and issues.  But she is doing really well!  I'm back to work at the daycare now and when her nurse went on vacation last week, I took her to work with me.  Even though the class I have is a little younger than her, she wanted to stay with me and she did very well with the whole preschool/daycare thing.  She loved wearing her backpack and having a lunch box and she loved playing on the playground with the other kids.  One way or another, by the fall, I would like her in a preschool so that she gets out in the world!  She'll be turning 3 next month, so her speech therapy with Early Intervention will end at that point.

She's currently obsessed with Frozen, just like every other little girl in the world.  She's going to have breakfast with Elsa tomorrow morning, which should be a lot of fun!

I'll leave you with a picture of Zadie and her big brother and baby sister from a photo shoot we did about a month ago.  Super cute!

Jonathan, Beatrix and Zadie