Folks – there are times when you have a sick child, that you become “crazy mom” (or dad). Times when the logic side of you knows that the situation isn’t as dire as it feels, but the parent part of you completely freaks and panics and starts going nuts about getting something done RIGHT NOW.
Today, I hit that mark.
When I went in to see Rowan this morning, he was on .5 liters on oxygen and his SATs were hovering between 68-74. You’ll note that this is NOT 75-85 like we want. Turning his oxygen up doesn’t really seem to do anything. The test that came back positive for an infection hasn’t said that he really has one for sure. The “preliminary” did. That’s the last we heard.
My gut says this isn’t him being sick. His cough sounds better and he is barely coughing now. He still smiles some (though he seemed sleepier today). Based on my understanding, I think that this could just be that he is outgrowing the first phase of his repair, and that he is ready for the Glenn.
No doctor has told me that, but that’s my current gut.
Rowan looked at me today while he was alarming and it was like he went “Mom. Do something.”
Well, hell.
So the Docs are now working to get ahold of St. Louis and see what they think. We’re working on figuring out if team here can take over Rowan’s care or if St. Louis wants him there…
but his cath that was supposed to be Wednesday has been cancelled.
Is Rowan in any immediate danger? I don’t think so. But seeing that is is NOT getting better and moving in the right direction makes me nuts. I want a plan.
So I have flipped the switch. I feel panicked and I’m pushing and pushing to get someone, somewhere, to give me a plan for figuring out what is going on and moving forward. I understand that things work slowly…but the mom in me is scared. SUPER scared that Rowan will need his Glenn before he is “well” for long enough to get a cath that says he can.
So I’m going to try to stay calm. I think all the people that need to be looking at Rowan’s situation have been contacted, and hopefully soon we’ll have something to go off of to develop a plan.
Until then, I think I’m going to feel a bit nuts.
I think we all knew this point would come, but that doesn't mean we wanted it to. I wish I could say something to make it easier or better, but I don't think I can. I'm just going to continue sending all of my positive thoughts and energy your direction and keep hope that Rowan is going to be ok. He's so damn strong that it's hard to believe he won't be.
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