This is the same kid that ten days ago we were discussing how his heart might stop and what measures would be taken.
He's off his sedatives. They pulled his arterial line; it was used to monitor his blood pressures constantly because for a while, he was that precarious. He's on his home vent and very much within his normal limits for his oxygen needs. He's pooping again, and yes, it's that important. When he gets backed up, he hurts, which means he doesn't breathe well, doesn't process oxygen, and frankly, it's miserable.
He had another blood transfusion yesterday. Illness influences the bone marrow and can inhibit the production of red blood cells and we've been watching as his hemoglobin and hematocrit drifted downward over the two weeks since his last transfusion. Hopefully now that he's doing better, they'll stay stable, but that's one of my questions on discharge: how often do we need to be looking at those numbers.
Did you see that word, "discharge"? Yep, we're talking about it! He's increasing his food tolerance and we're hoping (really hoping) that he makes his goal volume without trouble. We did have to stop for a little while yesterday but when we turned it back on, we started at 25 ml/hr, where we stopped, instead of going back to the beginning at 5 ml/hr. We should hit 60 tomorrow morning, which is the minimum goal. That would mean we run feeds or fluids through his g-tube over 24 hours with no breaks, but that's okay. We can slowly work up from there at home.
If he doesn't tolerate it, we'll have to go home with the TPN and the PICC line. That's okay. It's just another accessory (not that I'm feeling the need for more things). But we can do that at home if needed. Once again, my special needs mamas are rescuing me, sending me videos and tips on how to make things work at home. I've said this multiple times: I could not do this without them.
Today, down the hall, a butterfly hangs on a door. Today, others will receive gifts of life from a child who won't be going home with their family.
Last week on Aaron's birthday, a trisomy princess also went Home. I met her parents before she was even born and love them dearly.
Light and shadow, life and death. Joy and absolute heartache. Love and grief. It's all part of the dance on this planet we call Earth. There is no growth without pain, and while I shy away from suffering, there is so much I've learned. I'm a different person for having walked this journey, I think a better person, and I'm grateful for the lessons.
Children like Aaron are the teachers of our soul, and I'm so grateful for my mentor.
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