Dec 17-20

Let’s see..

They started talking about going home! (after I asked.) We’re essentially just waiting for his labs to get worse, which we have been assured they will eventually. Likely less than a month (but that gives us plenty of time for miracles, right?). But we can wait at home as well as we can here. There’s still several hoops to go through before we can make that happen, but Nephrology has signed off and everyone else is working hard to get us there. But there’s no reason not to wait at home, right?

They were originally talking about transferring us to Blank, but then nephrology said, essentially, it’s home or stay here. And I agree. As nice as it sounds to be back in Des Moines, if he needs a NICU, he needs the NICU here, because here is where they can do dialysis if needed, and here is where the ped urologists are. There’s really not much the NICU in DM can do for him.

Teddy pulled out his foley over the weekend. Hooked it with his toe. Youch.

They discontinued the PM 60/40 and switched to a protein supplement (actually an adult protein powder that has only 1 ingredient: whey protein) that will go in half of his feedings, and the other half gets to be just breastmilk. He is getting typically all but about 30 cc by mouth these days, and we hope that this change helps that, too. Breastmilk is absorbed much faster and so babies eat more than they do with formula, so hopefully once we get this switch made, he’ll be hungry more often and we’ll be 100% oral again. Then the ng comes out and we have to start doing the salt supplements (both sodium bicarb and sodium chloride) by mouth, too.

His ng tube came out and he’s eating much better. (the nurse had a theory that she pushed with the doctors that he would eat better without the ng in at all, because sometimes it irritates them and they don’t eat as well. this seems, so far, to have been the case with Theodore.)

His nasal cannula came out, and he’s been doing well without it. All good signs.

The semi bad news is that he’s been having this heart problem where his heart rate goes REALLY high when he appears to be resting and calm (not agitated). This had them concerned about his heart, particularly since babies with renal failure often have heart problems, too. (and having another major organ with problems in it drastically reduces a baby’s chances of doing well on dialysis.) After an EKG, chest Xray, and cardiology consult, they believe that his problem is actually his broviac line. (like a more permanent IV line that goes directly into his heart.) It’s moved to where it’s not supposed to be. The bad news is this means another surgery, probably tomorrow, but the GREAT news is that it’s probably not a heart problem. In comparison, surgery seems awesome… I’d rather he have another surgery than have a heart condition, right?


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