Liliana has her 2nd ever Pulmonary Hypoplasia Clinic tomorrow, and it’s going to be a doozy.
First, we have to wake up at 6 AM. I’ll have to get ready, and try to keep Liliana awake as much as I can after 6 because she needs to be sleep-deprived for one of the tests. We’ll have to leave around 7 to get into Philly around 8.
Liliana’s first item of the day: Audiology test at 8:30 AM. After that, visits with a General Surgery doctor, a Pulmonary doctor, Speech Therapy for her oral issues, and Nutrition for her feeding volumes. At 1 PM, Liliana will be taking a Pulmonary Function test, which means she can’t have milk nor solid food after 7 AM. The weird thing is that she’s allowed “clear liquids” until 11 AM, and they list breast milk as being a clear liquid. To be on the safe side, I’ll give her milk at 6, and then water when she gets hungry.They do list fruit juice as a clear liquid, but I’m sure that the acid in the juice would aggravate Liliana’s reflux. We’ll just stick to the water.
So for this Pulmonary Function test, Liliana’s going to be sedated and they’ll record her breathing and (I’m guessing) sat levels through a machine. This test takes at least 1.5 hours I believe.
To break it down: I’m probably going to get less than 5 hours of rest. I have to be in a hospital for at least 6 hours with a baby who will probably be extremely cranky due to her lack of sleep. I’m already feeling the stress of tomorrow, and it’s only 11 PM!
There are a few things I still have to get together in preparation for tomorrow, and then hopefully I can sleep a little bit.
Here’s to hoping that everything turns out alright tomorrow!
P.S. I totally forgot! Liliana rolled over today all by herself! She can only do it from being on her stomach to going onto her back, and she does it in a really interesting way. If I can, I’ll take a video sometime. OK, I’m going to hurry and finish things up so I can get some sleep! Good night!
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