Rowan got down to .1 liters. They turned the oxygen off. Rowan then got mad. Rowan is now on more than 1.0 liters which is ten times the amount of oxygen he was on earlier.
They are hoping to turn him back down tonight.
I for one DO NOT want his cath done next week. We know that he has some sort of bacterial infection due to a culture that grew – and I don’t want a cath that shows artificially bad numbers because he had an infection.
However, at this point, to the best of my knowledge no one has called St. Louis to ask about rescheduling.
I’m starting to freak out. Rowan had a shunt put in that was 4mm (1 mm per kilo the kiddo weighs is a rule we saw somewhere). Rowan now weighs over 8 kilos.
One of the requirements for the Glenn is that kiddos be above 5 kilos…which he is way WAY past.
So I feel like we’ve hit a point where we aren’t sure what timing is going to look like. Most resources say the Glenn is done at 3-6 month of age. Rowan turns 5 months next week. They wanted to wait two weeks past any event to do his cath, so if we wait two more weeks, then wait a week for the cardiologists to have their meeting and decide if he’s okay…we’re at the end of the timeline.
So my plan is to call St. Louis Monday if a doctor hasn’t and ask what they recommend with regards to his cath. I also am going to see if I can get ahold of someone here or there who can tell me if I need to be freaking out about this timeline or not.
Hurry up and wait. We can’t heal Rowan any faster. I just would hate to have a cath too soon, have it show bad numbers and be turned down for the Glenn…and then wonder if he could have survived if he’d had another week.
Sigh.
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