Day 49 (31/4)

10:30am – Hospital

As of 8am-ish this morning, Asher has been extubated 🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻

Initially he was a bit feisty and needing high levels of support, but when they put him on his belly (his favorite) they were able to wean him down comfortably…

No holding today because he’s getting used to breathing more on his own. He’s too touchy for any extracurricular stimulation, which is what we were expecting…

His first ABG is coming up soon. Those results will tell us how well he’s tolerating being back on the cannula 🙏🏻

As I’m writing this, he’s satting in the low 90’s, which seems to be the sweet spot. Once he hits consistent sats of 96+, they’ll wean him down again…

Dr Bragg (neuro) examined Asher’s head right before we came in today and said that the ultrasound is showing that his left ventricle is a little bit larger. She wants to do a therapeutic ventricular tap to help alleviate some pressure (the last ventricular tap was on his right side). Outside of that, his head looks good and his fontanels are still soft 🙌🏻

His feeds will be going up to 4mL today. His belly has been doing well with this round of feeds. Seem too fast? Here’s how Drs look at it:

For us we think an increase in feeds every 24 hours is fast but Drs define it as slow. Increasing feeds at a rate longer than 24 hours is rare, considered to be REALLY slow, and usually signals a GI issue (which we’ve done). A fast increase is when feed volume increases from feed to feed I.e. 1mL hour one, 2mL hour 3, 3mL hour 6, etc…

Update On Respiratory Support

One thing you’ll notice is that Asher is wearing a chin strap. This provides a soft, comfortable way to help hold a patient’s mouth closed during respiratory support. Because he’s on the nasal cannula, if his mouth wasn’t closed, much of the air from the nasal cannula would escape through his mouth thus sending less oxygen into his lungs…

He needed to get rid of that ET tube because of its inherent risks, but with him not being quite back to where he was the last time he was extubated, he’ll have the chin strap to ensure he’s getting the most support possible while he adjusts to the cannula again…

God is good and He’s continuing to pull us through. We are so blessed to have Asher! I find myself in awe that through it all, God has blessed us with our little family 🙂