IVIG Round 2

This is a post where I vent.  Don't say I didn't warn you.

So we waited around all morning waiting for the call to come into the CVICU to start Owen's second round of IVIg.  I never heard anything and around noon, I called the hospital hoping to find a window of time for admitting.  They said that they had plenty of room in the CVICU, but they were short staffed nurses, so they would call before 2 and let me know. 

Two o'clock came and went, and about a half hour later I got a call that there was no way to get him into the CVICU, but that there is room in the peds ICU (trauma, respiratory).  So we arrive at 3pm.  At 4pm, we finally get admitted and up to our room.

Turns out we are in the peds ICU overflow unit.  It's like a deserted world over here.. no doctors... no intensivists.  Just a couple nurses on this entire side.  Really?  Not the type of care that I was envisioning for a heart failure patient. 

The peds ICU attending just came by and was very sweet and took all his information.  There were a couple nurses in here and also the intensivist.  I asked them all how often they see cardiac patients getting IVIg infusions and they said, rarely do we see cardiac patients at all as they are on the cardiac floor.  Awesome.

For the past three weeks, I have been talking with the cardiologists about my feelings of Owen being placed on the cardiac floor for his infusions.  I have been reassured time and time again that ALL of the cardiac IVIg patients being placed on the sixth floor for infusions.  "They do it all the time" I have been told.  Maybe they do.  Maybe it's just the ICU overflow that doesn't seen IVIg patients, or cardiac patients.  My biggest frustration now is that I have been made to feel guilty for wanting Owen on the cardiac floor, as if I was overreacting.  I have been told those 25 beds are reserved for the "heart sick" time and time again.  In my opinion, Owen IS heart sick, or else he wouldn't be waiting for a heart transplant.  I hate that I have been made to feel guilty, that my concerns were invalid. 

Word of my frustrations has gotten around and Dr Z just came by.  She is a peds ICU intensivist that remembered Owen from his first two surgeries.  I just unloaded on her and she listened. It felt good, I'm not going to lie.  Still no cardiologists around, but she made them aware we were here.  I'm sure we won't see them.  Another sign that they just don't take an interest in Owen here.

 I feel like Dr Stock dropped Owen off on the transplant team, but that they haven't taken an interest in his care because Stanford is calling the shots.  I guess I feel like no one locally has our back right now.  It's not a very comforting place to be. 

We are still sitting in Owen's room, waiting for the IV team to come around and place his IV.  The pharmacy hasn't brought up his IVIg, nor his medicines, so we wait.  Three hours and counting. 

Owen is loving all the attention.. many of his old nurses have come by to say hi.  He is not scared or anxious and is having a great time watching cable and playing iPad.  That makes this whole experience a little easier.  Owen is settled in eating his dinner and happy to still be IV free.

Pray for my sanity tonight.. Mama bear is frustrated.