Thursday, August 1, 2013

Visiting Duke

Well, last week we returned to Duke for a few tests and a second angioplasty.  Gavin had another lung profusion scan, a sleep study and an angioplasty to address his left pulmonary artery stenosis.  It took a while to get Gavin's IV in for his lung profusion scan, but every nurse that tried, ended up holding him and singing "Twinkle Twinkle Little Star" to him, because that is the song Lorelai sings to him when he cries.  It was so endearing to see how patient and loving they were towards him.  The lung profusion scan and the heart cath showed that blood flow to Gavin's left lung was reduced by about 50% after the narrowing of his left pulmonary artery.  Luckily, after using two different balloons, the angioplasty was successful enough that he didn't have to have a stent.  The cardiologist warned us that Gavin may still need a stent at some point, but hopefully this buys us some time to get past the infancy stage before we may need to have that higher level of intervention.  There's always the possibility that this fix holds and we're done with cath labs!

We should have the results for Gavin's sleep study next week.  He didn't sleep too well through the night, but he did give me plenty of smiles and cuddles.  He slept fine as long as I held him, but the machines weren't running the tests like they needed to if he wasn't in the crib.  We survived it together and hopefully we'll hear positive news next week.

While at Duke, Gavin also received a speech therapy consult because he coughs fairly often when drinking a bottle.  The speech therapist noted that Gavin was showing clinical signs of aspiration while feeding and recommended that Gavin begin feeding therapies pending the results of a swallow study.  I'm still not sure exactly what that means for us, but it's pushed to the "worry about next week" list for now.
Today, Gavin went to the eye doctor.  His pediatrician recommended the ophthalmology consult a couple of months ago.  Gavin has a lazy eye and he has diminished vision in that eye.  He has to begin wearing a patch over  his strong eye for two hours a day, in order to force his weaker eye to work and grow stronger.  He was also fitted for glasses which he should get next week to help with some of his vision issues as well.  We will try this approach for two months.  If there isn't significant improvement, then Gavin will need to have the issue surgically corrected in about three or four months.  Sigh.  For the record, that would be surgery number six.  So we're going to try the patch and glasses for two months and pray that it works for our baby and that he doesn't need surgery.  Either way, we'll make it through as a family and make sure that Gavin feels all of the love that surrounds him.  Now, to get toy eye patches and glasses for Lorelai, because I know she's going to want some when she sees Gavin's.  Kids are so cool like that.
Next week will be Gavin's nine month well baby check so a lot of test results and new plans of care will be developed.  Thank you for all of your kind words, encouragement and prayers.  Our days are getting easier and our little man is growing and changing every day.  His smiles, laughs and coos make everything else so insignificant.