Sunday, July 1, 2012

What are we doing and where are we going?

We got a call this morning just before heading to the hospital that Bonnie had a rough night last night.  Apparently some of her blood gases had been less than stellar, she had dropped her oxygen levels a couple times, and she had a couple episodes of sweating and temperature instability.  That last part they said looked similar to babies having drug withdrawal.  Bonnie *is* on a couple narcotics, but they haven't weaned them or anything, so she shouldn't be going through withdrawals at this point (that'll come later--hurray)...although there is the possibility that her body has adapted to the dosages she's on and what she was on two weeks ago seems like less medication now (did that make sense?).  She also had an episode this morning--totally freaked out when her respiratory therapist tried to change the tape on her tube.  All these shenanigans led to suspicion of an infection somewhere, so blood cultures were drawn and antibiotics were started just in case.

Well.  By the time we arrived at the hospital about half an hour after we learned all that, the focus had entirely shifted to the fact that she's had nearly no urine output since coming off ECMO, even with several doses of Lasix--a diuretic.  She's still *incredibly* swollen, and her electrolytes are starting to get out of whack.  We were warned that her kidneys would probably take a couple days to get up to speed after coming off ECMO (she didn't pee at all when she was on ECMO, but that was pretty much expected, and nobody got too bent out of shape about it).  Now that she's been off for about three days, people are starting to get antsy. So the nephrologist (kidney guy) was consulted, and his conclusion was that she needed to be placed on dialysis, which will do the job of Bonnie's kidneys while we wait for hers to wake up.

There are a couple types of dialysis.  Due to her diaphragmatic hernia, she only qualifies for one type--hemodialysis.  Conveniently (ahem.), they don't do this type in the NICU.  They do it in the PICU (pediatric ICU), but the PICU doesn't use jet ventilators, which is what Bonnie is on. Quite the quandary, eh?  I was terrified that we were going to have to move her to the PICU, where none of the docs would know her and her issues and the way she likes to operate.  After some discussion amongst the powers that be, the ultimate solution is to keep Bonnie in the NICU, but have a nurse from the PICU (who knows how to operate the dialysis pump) check in every hour, or more often if needed, to make sure everything's running smoothly.

The rest of the day we were waiting on one particular doc to insert the dialysis catheter (into her femoral vein, if you're interested).  Since Bonnie can't do anything the easy way, the doctor wasn't able to get the catheter in.  So *then* we were waiting on the surgeon to get there so he could try it a slightly different way. Holy moly.  We had to head out before the procedure got going (finally. at 7:00 p.m.), but when we called to check in, Bonnie's nurse said that the catheter was placed successfully--they're just waiting now on the dialysis folks to get the pump going.

So that was our day today.  The hernia repair, which was originally scheduled for tomorrow morning, is definitely on hold for a few more days.

Prayer requests would be the following:

  • For Bonnie's kidneys to get with the program and start working.  We would love to see her less puffy soon.  It looks really uncomfortable :(
  • For whatever caused last night's crazy issues to resolve quickly and easily.  Please pray that it's not a blood infection (we won't have culture results back for a couple days, but she's not acting like she's septic, so that's good).
  • For her lungs to clear up.  They had been clear and beautiful for the past two days, but this morning they were basically whited out (i.e. too much fluid).
  • For her surgeon to find another good window of opportunity for her repair surgery.  She can't make much significant progress toward coming home until her organs are back where they belong.
And to balance things out, here are some things we are thankful for:
  • Bonnie continuing to do well off ECMO. So glad to have that machine out of our lives!
  • The fact that dialysis exists.  She needs it, and there really aren't any other options.
  • Bonnie's brilliant doctors and her amazing nurses. 
  • Our housing situation here in Charleston.  Another shout out to CrossBridge Ministries, which is providing us *free* housing, delicious meals a couple times a week, and various other forms of encouragement and assistance.  We so appreciate everything they have done and are doing for us.
  • Grandparents!  Despite my months of worrying that Henry wouldn't adjust well, he is having the time of his life here being entertained by Jonathan's and my parents.
  • Henry. Man, I love that kid.  We can have the crappiest day at the hospital, but when Jonathan and I walk in the door, Henry gets *so* excited to see us (huge smile, squeal, clap, jump up and down) that   we just can't wallow in worry and fear.
  • All of your prayers, cards, packages, phone calls, and text messages.  We aren't alone in this. Thank you all.

1 comment:

  1. I will do my pee pee dance and wish Bonnie a visit from the pee fairy. Keep it up Bonnie!