The thunder rolls...

I know - cheesy reference.  No, this is not about some extramarital affair that Garth sang about.  This is about storming... autonomic storming.  When neurology first discussed storming with us, they walked out of the room and Brandon started in with, "The thunder rolls...".  So it's been the text that I would send him when another storm was happening.  When I sent it this morning, I nearly broke.

The last 2 mornings, I got up around 4:30 and the nurse told me that Ellie was upset around 4 and that she'd given Ativan.  I thought maybe she was being overzealous, but that nurse was very attentive and I really like her... so I knew she was using her best judgement.  This morning, however, I got up and gave Ellie kisses quick and hopped in the shower.  When I got out, she was very upset and her heart rate was in the 190s, but the nurses were messing with her, so I assumed she was upset with them.  A while later, I held her to calm her down (they had just suctioned her and made her gag and get sick).  As I held her, her head jerked from side to side... not smooth at all.  Her heart rate wouldn't budge and occasionally peaked over 200 before the monitors alarmed. 

I called the day nurse in and asked why the upper limit was set to 200 instead of 175 (like it used to be).  She said 200 was usually the standard for babies.  I told her that Ellie’s was usually set around 175.  I asked her to take a temp… almost 101 F.  This isn’t a crazy fever, no… but a low grade temp, along with the elevated HR and a BP that wouldn’t read on the cuff (because Ellie was moving around too much) meant that Ellie was in the midst of another storm.  UGH.  Tears rolled down my cheeks as I asked for a dose of Ativan.  We’d halved the dose last week so that it didn’t put Ellie totally out during withdrawal.  The half dose didn’t touch the storm this morning.  The nurse practitioner came in and rubbed my back while I cried over Ellie.  She approved the other half dose of Ativan and agreed that this is what Ellie looks like when she storms.  I told her that I wasn’t happy with an upper HR limit of 200 on the monitors.  It was changed at some point early in the morning (probably because the nurse was tired of it alarming – which further frustrates me).  Without staring at the monitor all day, I HAVE to know when that HR is increasing.  I HAVE to be able to catch these storms before they get harder to manage.  I’d much rather be able to give half a dose of medicine and have her comfortable than give the full dose that knocks her out. 

So… I feel like I’ve been punched in the gut this morning.  I was so ready to be done with these.  So ready to move past this.  Tears… lots of tears.  Brandon and I have often talked about God’s place in all of this.  We’ve had much worse days than this, of course, but we’ve asked, “If we give God all of the praises when we get good news, are we also allowed to be mad at Him when bad news comes?”  That’s a hard trial on faith – for sure.  I don’t know the answer to this, of course… but I have to remember that God loves us in a way that we can’t even comprehend.  Ellie is as much His child as she is mine and He cares for her even more than I do (even though that seems impossible).

In rounds this morning I asked if she can start propranolol again.  We have to find a way to manage these before they spiral back to where they were when we came in.  So that’s where we’re at.  Dang it.  Mom sent me a text this morning that said, “Get knocked down seven times.  Get up eight.”  Sometimes I just wish that it was ME getting knocked down.  I kind of deserve it.  Ellie does NOT!  But hey, who said life was fair?  Sometimes your days just suck… and there’s not a prettier word for it… there really isn’t.  So far, this day sucks.  I’m frustrated at the situation and furious that it could have been handled differently.  I made my grievances known, though… so I’d guess that Ellie’s HR parameters will not be changed again.  Okay – now to refocus for the day…

Thank you for following along.  I’m sorry I don’t have a better attitude this morning… but I promised to be real – and this is real.  I really do appreciate your support and prayers – they keep me sane on days when I’d otherwise lose it completely.  Can I request prayers that the reappearance of storms does not indicate high PVR??  You’re going to start sounding like me in your requests to the big man. Thank you, thank you.  We love you dearly!