Wednesday, May 1, 2013

Fontan's postponed...

So Children's called this morning to let me know that Lia's surgery Monday morning was being bumped to 11am or noon.  We were scheduled to be the 7:30am case, but Dr Forbess needed to do another procedure first thing that morning instead.  That was not great news to me...I really like the idea of being first thing, with a fresh, rested surgical team.  With that being said, I understand that these people are professionals and perfectly capable of performing this surgery at noon or any other time of day that they are called to do it.  I also know that they would never agree to start her surgery at a time that they felt like would be unsafe.  They want to keep these kids as safe as possible...after they called me back this afternoon, I know that for sure.  

While I was on the phone with them, I told them that I wanted to make sure they knew that Lia was finishing up a round of antibiotics.  Her pediatrician had placed her on antibiotics after we found out that Jace had tested positive for strep about a week and a half ago.  I had told her that Lia was scheduled for surgery on May 6th, and that she was running a low grade temp after her heart cath.  We both agreed that in order to protect Lia, it would be a good idea to cover our bases and put her on antibiotics as well.  I told that story to the Nurse Practitioner this morning, along with the fact that I was feeling terrible today with what I know is a head cold.  Lia has also had a runny nose now for a couple of days.  I wanted everyone to know these things, because I wanted to make sure it was ok for her to have the surgery after having been exposed to my cold and maybe Jace's strep.  

They called me back this afternoon to tell me that both Dr Forbess and her anesthesiologist had agreed that the right thing to do would be to postpone her surgery for around 4 weeks.  Four weeks!?!  I asked why, and they explained that they were concerned that she was still on "preventative antibiotics" and that those might be masking a real infection.  Now that she's been on them for almost 10 days, we can't prove she isn't sick.  So we wait....that's the safest thing to do.  

So there it is...after a few hours of heartbreaking frustration, crying, and now a nap to top it off, I think I am ok.  How do I possibly describe how this feels?  I can't.  I'm not a good enough writer.  It's not like I'm wanting my 4 year old to have open heart surgery.  It's not like I'm upset with the doctors at Children's for wanting to be careful.  It's not like I'm not a reasonable person who also happens to be an RN with a good understanding of what an infection can do to an already compromised child.  So why am I upset?  

Plans...that's why.  Stupid plans.  It's the whole "controlling things" that I can't seem to let go of.  This puts Lia 4 weeks later in the summer before she can swim.  This gives her 4 less weeks to fully recover so we can go to Disney in August.  This gives us more weeks to find places for the boys to hang out while we are in the hospital because they won't have much more school when she goes in.  This puts me missing the beginning of the summer NICU internship that I teach instead of giving me a month to get ready for it when I get back to work.  Most of all, this gives me 4 more weeks to feel the weight of all of this pressing on my shoulders.  That's the worst one of all....

Here's the deal, though.  Plans can be rearranged.  Vacations can be switched around and we are fortunate enough to have plenty of people to pawn the boys off on.  People who love having them around and with whom they love to go with.  I have more than enough good support at work to handle my being gone the first week (or more if I need it) of the the internship.  

About that weight pressing down on me?  Yeah, it's there. It will still be there for the next 4 weeks.  But the feeling I get reminding me that there is a reason for this is stronger than that weight.  I believe things like this are no coincidence.  Yes, it is enormously disappointing.  Yes, my heart broke when I realized that instead of this being over and us recovering at home, we will only be beginning on May 30th.  It's very difficult to get geared up and gather all of the courage you can muster to face something, only to find out you have to wait a little longer.  That's the only way I can describe it.  With all that being said, we will regroup and press forward.  I gave myself a few hours to feel sorry for myself, and now it's time to move forward with our new plans.  

As many of you have already said today...and one of my wisest friends put it best.  "God's plans are bigger than ours."  I believe that He just might be protecting Lia from something...and I'm gonna go ahead and let Him make these kind of shot calls.  I trust Him.  I do.  I keep saying that, because I do.  

"Trust in the Lord with all your heart, and lean not on your own understanding...Prov. 3:5"

This is not about Disney.  It's not about convenience.  It's about something much bigger than that.  It's HIS plan, not mine. 


 

3 comments:

Erica said...

I cannot even imagine what you are going through. It is so hard to give up control. Especially when it comes to our kids. But God is sovereign. That is who He is. So no matter how much worry we put into things and no matter how much control we think we have, we have absolutely zero! He loves you and Lia so much! Give it all to him.

Moore Memories said...

Oh Lisa. This brought tears to my eyes because I know your mommy heart is just so ready to put this step behind little Lia Kate. We sure love you. There is not a day that we do not talk and pray for Lia. On to the next plan!

The McIntires said...

Praying for Lia and understanding that weight that is on your shoulders... just wanting it to be over and everything to be ok! We will be praying for the weeks ahead as you have to wait it out, all the while never able to get it off your mind. Our family will be praying for your family, the doctors/nurses, and Lia Kate on her big day!

Brynn's Mommy,
Susan McIntire