6 days in

I'm not sure what I expected with Carolines recovery this time around.  She's always done quite well and exceeded our expectations.  But, as things are, we sit and wait for drainage.  We started this morning with another 4 am blood draw.  Drainage overnight was barely in the comfort zone and she had her first chest tube pulled around lunchtime.  The other is still putting out too much fluid and we wait to see what tomorrow brings.  The electrophysiologist saw us this morning and did some fine tuning on her pacemaker.  It's pacing her 55% of the time!  I'm hoping that number significantly decreases as she heals.  

Boo pacemaker

We had a rough morning and afternoon. After getting poked for labs, around 5:30, her heart rate spiked to 180 and they pulled in EKG and the pacemaker people (electrophysiologists). They're calling it pacemaker mediated tachycardia. She had an IV blow last night that got pulled to make way for having another put in. They're talking about a PICC line because she's such a hard stick. 

This pacemaker business is frustrating stuff.  We have had 3 adjustments today alone. One of the chest tubes was scheduled to be pulled this afternoon, but it started draining again so we're holding off.  I keep reminding myself that she just had surgery and we are PREPARED to be at the hospital as long as it takes.  I think I got a little ahead of myself but being here humbles me. And makes me even more thankful for that beautiful girl. 

Draining

Caroline had a very anxiety filled blood draw this morning about 4 am.  Because she is such a hard stick and they blew so many veins during surgery trying to start lines, we were dreading seeing the phlebotomist.  We got super lucky and she got labs on the first try.  Not a very fun way to wake up in the morning... We also had to go downstairs to get a chest X-ray right after labs.  We got to try out our new wagon!  

This little girl is wicked tough. She has deemed it necessary to go to the potty and pee.  She hasn't had narcotic pain relief in 12 hours. She's starting to eat a little, and has begun smiling more and telling jokes. 

They came in and separated her chest tubes so we can monitor drainage more closely. Waiting on her to pee a little more with Lasix and the tubes to drain less before we can talk about home. 

Step Down!

They just rolled her into the step down unit and she's taking a nap. She's on lasix, antibiotics, and Zantac. Also a bit of pain medicine with morphine as needed. 

Less is more

Caroline is awake and watching a VHS version of Alice in Wonderland. She looks like a whole new kid! She's on room air and has no lines in other than capped IV's. It's hard to believe we're less than 24 hours post open heart surgery. She's still in the ICU. Now the chest tube draining game begins! 

Progress

After formal rounds this morning, we were given the thumbs up to head to the step down unit. She's currently on a quarter liter of oxygen, zero functioning medication, weaning narcotic pain drugs and expecting to have the arterial line and central line pulled with the foley and backup pacer within the hour. So, soon she should have her 2 main chest tubes, 2 IV's, and oxygen left! 

Update

Caroline has settled into the CICU.  The vent was removed immediately and she has weaned down to 3 liters of oxygen.  They had a tough time starting a central line and she vaguely resembles a pincushion. She is on a couple functioning medicines and pain relief.  Our short term goals are to wean the IV drugs and get her to the step down unit. 

Update

Just talked to Doctor Kanter. He said everything went well. She has an extracardiac fenestrated Fontan and a pacemaker. He also patched her left pulmonary artery because of some narrowing. Waiting an hour while they get her up to the CICU. 

Update

She's off bypass. They're working on controlling the bleeding and placing the pacer. 

Update

Caroline is on bypass. They have started on the repairs. 

Update

Just got our second update. The OR nurse said they haven't started the procedure yet. Apparently they're having a difficult time getting into her chest through the scar tissue. 

Update

We just received the first update that they have started the procedure. She's been back 2 hours. When I spoke with Doctor Kanter before surgery, he mentioned just placing the pacing leads and not the actual transmitting box. The nurse practitioner just informed me that he has seen her in the 2 to 1 block on the table and has made the call to place the entire unit. 

Arrived

We made it!  6 am arrival and Caroline is watching a movie on the iPad.  I'm trying to keep my crap together because she totally caught me with tears in my eyes this morning and asked me why...ugh. 

Postponed

We found out we're being bumped to Tuesday on the surgical schedule.  

Pre-op was interesting with a very overtired preschooler. Everyone's least favorite part was the blood draw. Spending 8 hours at the hospital with 3 kids just sounds like something out of a horror story. My sister Cindy helped with Nolan and Everly while I tended to business. Just one step closer...

You can't make me

As the surgery date draws near for Carolines Fontan, I have chosen to hide under a big ol' Mama sized rock and deny everything. I'm in denial. If I ignore it HARD enough, maybe it'll go away. I closet prepare for her hospital stay...When no one is looking and very late at night. I feel like if I live constantly in the shadow of this upcoming surgery, I'm denying her the last few days of normal before hospital beds and medical jargon completely take over. We enjoyed a visit to the Cabbage Patch as a rainy day expedition this week. It was a welcome distraction. 

Come dance and twirl with the birthday girl!

Caroline had a fabulous time celebrating her 4th birthday with friends and family.  Icing Smiles provided her cake again this year and Room for Dessert in Monterey did a great job being our sugar angel!  

Also, my big girl got her ears pierced!  I let her pick out earrings (she chose blue opals) and she did such a good job at the piercing studio! She made everyone smile and convinced me she's the bravest person I know.