Friday, December 11, 2009

The News isn't good...

We are home from the urologist. We mostly have an answer. Eli virtually has no right kidney. The kidney is so damaged that there is virtually no kidney tissue left, and there is no way of saving the rest he thinks at this point. Eli is to small to have surgery right now, so we wait. On January 22nd he checks into our local hospital for a neurophysical biochemical kidney profile. They will fully test both kidneys to find out how much function he has. They are expecting none on the right and hoping for full on the left. His left on the sono's during pregnancy was barely enlarged, so now the full extent of how well it is working is incredibly important. After all of this Eli will be sent to Kansas City to a pediatric urologist surgeon for surgery. The surgeon here isn't comfortable operating on such a young small patient with so much damage.
Nobody told us during this process that we would simply have no kidney at all. We were told, oh it's normally a blockage, surgery to fix it, all better. Nobody mentioned the possibility of so much damage that we would simply have no viable kidney left. My head was spinning when the doc told me, as this wasn't something I was expecting at all, never had crossed my mind. Then I think back thru the whole pregnancy. I never took a tylenol, a tums nothing. I had that damn horrible rash in early pregnancy that many of you remember and put that medical cream they gave me on it, but that's it. nothing else. i never took a single damn medicine. hell i craved freaking salads this pregnancy. i ate well, i did everything perfectly. i'm just frustrated and stunned and no flipping clue what else.
so now we wait...and we try oh so hard to gain weight. we are hoping the meds start working for his reflux quickly and that the throwing up will subside so we can finally begin to gain some weight.
we are exhausted. feedings are so time consuming, keeping him in the perfect position, pacing him while nursing, making sure he doesn't choke. Then keeping him upright after each feeding, and making sure anytime he isn't being held that he's upright as well. we have spent more time at the hospital than home. we've eaten virtually nothing in days, maybe 2 warm meals this week. the house is a mess. we haven't seen our 4 kids for the last 3 days, and they've only stayed with us 4 out of the last 11 or 12 days...i've lost count. i miss my kids, i miss a normal life. i'm exhausted and hungry and tired and i don't know.
eli and i are home alone. may take a nap with him, may just stare at him while he sleeps, may just curl up in a ball on the couch and cry....may do all the above.

thank you to everyone for all of the support. i have no freaking clue how we would be making it thru this last week and a half without the support of all of you! we are truely so blessed in so many ways!

1 comment:

Kath said...

So hard to hear right now, but this, too, shall pass. We will be praying for you, Mr. E, and family. On the upside, at least the local doctors realize their limitations and are not taking on a surgery that they would not be prepared to do. In the meantime, the housework will wait, paper plates and take out will do, and don't be afraid to lean on your friends and family to get through this! Take care!