Back at Children's

"Many are the plans in a man's heart, but it is the LORD's purpose that prevails." -Proverbs 19:21

This was the verse in my devotional today and is it ever appropriate.  It was just what I needed this morning after the day we had yesterday.  Sophie had a seizure at about 9am yesterday morning and with two doses of Diastat (emergency medication) it wasn't stopping.  I was nervous, but not panicking, and put her and Madelyn in the car and drove to the ER.  By the time we got there the seizure had stopped, but I took her in to get checked out anyway.  Once they hooked her up to the monitors they found that her heart rate was way too high...in the 280s.  She wasn't showing any signs of distress so I would've never known had she not had a seizure that couldn't be stopped.  The heart rate spike was surprising b/c she has never had this before, but not shocking as she's been monitored for the possibility of this happening.  She has been followed by a cardiologist all along for the tumors on her heart and we have known she also has a condition called Wolfe Parkinson White (WPW) where there is an extra pathway in the heart for electricity to move through.  This puts her at risk for something called SVT which is basically a very rapid heart rate.  Up until this point she has never had any SVT episodes, but yesterday it became an issue.  The ER visit very quickly became a cardiac event rather than a seizure event.  It took them about 2 hours to get an IV into her since she has been stuck so many times in her 6 weeks of life that there just aren't many veins to get a line into her.  Once they got the IV in place they gave her a medication that successfully lowered her heart rate.  The ER doctor was in contact with her cardiologist at Children's and they decided to transfer her there for observation while they start her on a heart medication to keep her heart rate steady. 

The day was exhausting.  I went from making a grocery list to rushing to the ER in a matter of a half hour.  We ended up getting Kayla out of school a little early and packing up to stay at Mike's parents for the weekend.  We went to see Sophie last night and she was stable and doing well.  We were at Children's for a couple hours today and it looks like they'll keep her until Monday so that both cardiology and neurology can do their consults and establish a plan from here.  She'll go home on the heart medication which means she'll be on four medications total (3 for seizures, 1 for SVT).  It's hard having her back in the hospital, but we know she is in good hands and I'm going to use this opportunity to take care of myself and get some rest.  The mental and physical stress of the past 6 weeks is really catching up with me.  We had just started settling into a routine at home and now things are up in the air again.  Hopefully we'll be back at home soon.

One of our pastors spent some time with us at the hospital today and she made a point that touched both Mike and I.  She said that in this uncertain time in our life we are going through a "sprint" phase right now.  As time goes on and we learn how to manage Sophie's medical issues long-term we will eventually enter the "marathon" phase.  While it may not be easy, we will learn with time how all this will integrate in our lives and it won't always be so hectic.  It is comforting for us to look to the future in this way.  I struggle with wanting stability, certainty, and answers during this time.   Yet, we have to trust that God has a plan for us and for Sophie.  A perfect plan.  He is with us always and His plan will prevail.