Thursday, May 30, 2013

Days 42 & 43, Post Op Fontan (May 29 & 30)

Wednesday, May 29:  An easy, laid back kind of day.  We had therapy, lots of play time, food, and no x-rays or testing to do.  The hope was that the effusion seen on the previous x-ray would dissipate as Eli was more active and that his lung function would fully return since having the diaphragm plication.  The plan was to do a chest x-ray in the morning.

Thursday, May 30:  Transport came to get us before we were even awake!  That's the first time that's happened to us this admission.  They let me go brush my teeth & put on shoes as the nurse got Eli ready to go.  It was nice to get it over with so early.  Once back in the room we ordered breakfast and ate a little.  Our nurse was in the room as we were eating and she got a phone call.  I heard her say "he's eating now."  Immediately I knew Eli needed a chest tube and they were discussing his NPO status.  I was right and we let him take a little more milk as I cleared away the food. 

His chest x-ray actually looked worse than two days ago.  Dr. Abraham wanted to proceed with another chest tube in addition to the JP drain Eli already has in place.  It was tentatively set for 2pm in the PICU.  I had four hours to distract him from food and drink.  We went to the playroom, played baseball outside on the play ground and walked many laps in the hallways.  At one point, a volunteer came and sat in the room with him so I could go eat lunch.  It's really difficult for me to get away & eat when he's NPO because I don't want to eat in front of him.  He was screaming when I left, but she said he settled down quickly and actually fell asleep.  When he woke up he was asking for "bot" and "bites" (bottle and food).  I have developed several ways to lie to my toddler when we have to withhold his food and drink.  The easiest is to tell him we're out and I have to find some.  He'll even send me out to the hallway to look for it while he waits.  When he thinks I've been gone long enough he'll start yelling and I go back.  We try another method of distraction for a while before returning to that one.  Yes, I lie to him because I've tried reasoning with him and found it doesn't work.  Who knew?

Just before we were supposed to go down to PICU for the chest tube, I posted a prayer request on Facebook letting people know what was going on.  Five minutes later our nurse came in the room and said we had a change of plans.  Throughout the morning and early afternoon, she had emptied his drainage bulb and "stripped" the tube several times.  She had removed over 100cc in the few hours she had been his nurse.  Cardiology said they wanted to see if anything was different from the chest x-ray he'd had a few hours prior, so an ultrasound of his chest was ordered.  The tech saw NO fluid.  Eli is still making and draining fluid, but the large effusion that was seen this morning had drained off!!!  ELI DID NOT GET A CHEST TUBE TODAY! :)  We came back up to the room and (after making sure he was allowed to eat) he got a bottle.  I asked what he wanted to eat and he immediately said "burger."  We ordered him a burger & he ate several grapes while we waited for it to arrive. 

The plan now is to wait and see.  There is some talk of sending him home with the JP drain.  He will definitely stay through the weekend and we'll re-evaluate on Monday.  He's been in the hospital so long and it's amazing he hasn't gotten sick from being here.  The risk of him getting sick while he's here increases the longer he's here.  Even with everything Eli's had going on, he's not sick.  He's still getting antibiotic therapy while he's here, but Dr. Belcher says he would have stopped that had we already been discharged. 

Specific prayer requests:

- for the JP drain to keep draining and no new pockets of fluid to develop
- for Eli to stay healthy and not get sick because of being in the hospital so long
- for us to be home soon! 

Thank you for the response to our prayer requests via the blog and/or Facebook.  Thank you to the visitors we've had today and yesterday (fellow heart baby Caleb's parents came Wednesday evening and today we had a long-lost family friend, a relative, and a new family friend).  They've all helped boost our spirits in their own ways.  In no way have I felt that we've been forgotten, but it was a wonderful, visual reminder that we are remembered and loved.  Thank you all for that through your visits, comments, and prayers!  Today's experience with the vanishing effusion is evidence that prayer works!!!!!

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