Julianna update — two steps forward, one step back

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(Christian here) What’s the saying, two steps forward, one step back? After making a significant amount of progress in the past 24 hours, Julianna gave us a little bit of a scare today and required some additional oxygen support.

Current status – Julianna is currently on a “c-pap,” which can also be used to help with sleep apnea (sp?). While her numbers were looking good, there was a “blip” this afternoon, and she started to fall off, possibly because she was getting tired again, possibly due to a leaky heart. Yes, that’s right. Her original problem when she was born may not have been totally repaired and could be causing some complications now. How much, we don’t know. However, the doctor has an echocardiogram scheduled for tomorrow, so we should know more.

Right now, J is about as comfortable as anyone could be with what appears to be a medieval torture device strapped to their head. Now, for the record, let me state that the nursing staff, respiratory therapists and doctors have all been nothing short of fantastic. They are constantly by her side day and night (I can attest to the night portion very well), and many have commented how they remember her when she was in this same unit two years ago with RSV. (How many medical teams do you know that remember an individual patient whom they haven’t seen in 2 years?!?!?!?! These people are truly amazing.)

And another big thanks to everyone who has offered help, prayers and support. Every contribution has been huge and we really appreciate it. We have a lot of “paying it forward” to do when we get out of here.

Have a peaceful evening.

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