IVIG Round 9... Bumex vs Lasix

We are home.  This round of IVIG started pretty smooth!  We got his IV in quickly at around 7pm and started his infusion around 9pm.  His day and night nurses were on it.  The only complaint I could have made was the night nurse didn't calculate his infusion properly, so instead of an 18hr infusion, it ended up being a 20hr one. 

Owen was crazy, silly, full of energy most of the time we were there.  He wanted to sit up in the chair, rather than be in bed, and we played about 8 board games this morning alone.  Puzzles, crafts and visits from hospital friends.  It was a good day.

Around 2 hours from when the infusion should have ended, we went ahead an increased the infusion so we would be done around 4pm (should have been done around 2:30ish).. no big deal.  Owen has some tummy issues with each IVIG and doesn't feel like having too much food.  This time, he didn't want much of any and I had a hard time getting tube feeds in him.  I didn't want to push him to the point of puking.  His belly was distended (big and round) and hard.

When I admitted him, I overheard the nurse saying that the IV Lasix is on backorder and they had no supply from the manufacturer.  He gets a big dose of IV Lasix (diuretics) half way through his 18hr infusion to help him keep the fluid off.  Instead of IV Lasix, they made the call to give him IV Bumex, which is much more potent.  Owen has never had this, but I assumed it was fine.  His local transplant NP ordered two small doses and held his oral Lasix doses as well. 

Fast forward to early this afternoon, I noticed his belly and so I told his nurse to have a doctor come in and see him.  One of the biggest concerns I have is that we have never seen his transplant cardio when we are inpatient in the CVICU (Cardiovascular Intensive Care Unit).. ever.  His NP comes around and admits Owen and does her assessment, which wasn't done this time around.  Anyway.. a random cardio we never met before had dropped in this morning for a quick listen and that was that.  He has never seen Owen before... kinda strange.  Sorry.. I digress.

After about 45 minutes of waiting for someone to come look at Owen's belly, an intensivist, we have never seen before came in and looked at Owen.  She looked at me and said 'what do you think?  If this happened at home what would you do?"  Seriously?  I asked her about the IV diuretics and doses and she had no idea so she called his transplant NP to confirm what was given.  It sounded like he got a pretty conservative dose of Bumex, and he was fluid positive by about 190ccs.  They wanted to give him another dose of IV Bumex, which I declined and requested he just get his regular dose of oral Lasix.  Then she said "we'll probably keep him to monitor him for a while!" 

I have no problem with keeping him to monitor him, but the problem is, no one actually is monitoring him but Me.  It's so frustrating.  It was about 20 minutes later that his transplant NP called me on my cell to say she spoke with Stanford and they said if he was there and this happened they would keep him a bit longer to make sure he was okay.  That is when I broke down in tears.  Mostly out of frustration.  My point to her was that they aren't monitoring him there.  Yes, he's in the CVICU, but not a single one of the doctors or nurses from his transplant team locally were there to assess him.  No cardiologist came in to assess him.  I feel like they just don't care at all!  When I tried to make my point she said "I am not going to argue with you anymore."  Bring it on... the tears, the frustration, it all boiled over and I just hung up.

For the next hour, no oral Lasix came.  The nurse finally brought it in and I made sure she knew it wasn't her that I was upset with.  She was great!  She understood where I was coming from.  We ended up staying and being "monitored" for another two hours and guess what?  Not a single doctor, NP, intensivist, NO ONE came and saw Owen.  No one assessed him.  Even after Owen's nurse asked at least FOUR different times for a doctor to come in and check on him per my request. 

The discharge orders were in the computer, but put on hold.  Our nurse got someone to release them and we were out of there. Owen is doing better with his extra dose of oral Lasix, just as I predicted.  He has been moving around at home and feels so much better!  We are getting ready for bed now and I am drafting up a letter for his cardio.  I'll call his team at Stanford tomorrow and fill them in. 

On a happy note.. Dr Stock came by to visit!!  Child Life made Owen's stay memorable as always.. Tara is amazing!  We did a full chem panel and all of Owen's numbers look normal.. yay!! :)