I'm not sure how much I've been updating or sharing with people, and since I can't remember jack-squat these days, I thought I'd just post what I know :)
So, Joel's actually doing really well. He's still at risk for lots of problems, mainly being infections/sickness from being in the ICU for as long as he has. After last week's testing, they realized that the main cause for all of Joel's recovery setbacks are blood clots. Everywhere on the venus side of his body. We aren't sure yet, and won't be sure for many months as to whether he has a genetic predisposed "condition" that has led his body to clot as much as it has. The clotting is extensive in his lungs, which is why they've had a hard time ventilating him, and now getting him extubated. The clotting has been so bad in his veins that the central line he has in currently is the only place that is still open to place one in. His blood circulation is bad because of the clotting, he has pulmonary hypertension (high blood pressure in the arteries that go to the lungs,)...so, yes. My son is a clot monster. It's better to know than to not know, and I am truly so so happy about that.
Over the next few weeks we are focusing on his respiratory wein & narcotics wein...it is a very very slow process, and there's a fair chance that he will still need to go home with a trache, but I think he needs a fair shot also. He's very weak. Physical therapy started this week, and he's on full feeds with a special formula. We'll see how the next week pans out as far as progress, and by then we should know more about whether we'll continue with excercising off the vent, or moving forward with the trache. Ok, how's that for an update? It was long, and again, I apologize for not returning calls or texts....it's a mouthful to update one person. It's exhausting to update ten to fifteen times a day, which is what I was doing. I do miss all of you, and I will be wanting visits soon. Thank you to all of you for your continued support and prayers for our family and our precious 7 week old baby Joel. Much love!
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