Almost 5

I had to prepare a brief recently, explaining Caroline's condition and going over emergency procedures.  In doing this, I went to trusty Google in search of images to better explain the circulation of a child with the extracardiac fenestrated Fontan.  While scrolling, I found a familiar face smiling back at me!  

It was a story done by Icing Smiles.  

As her fifth birthday draws near, I felt compelled to share.  Icing Smiles is a wonderful organization that has made every one of Caroline's celebrations extra special.  I'm often reminded of how fortunate we are, as so many little ones with congenital heart defects are struggling or have already gained their angel wings.  I don't forget.  I'm always thankful.  

Progress

Caroline made it to the post op appointment without having a re-admission!  We were warned as I practically ran out of the hospital that her lungs were exceptionally wet and that a re-admission was not only anticipated, but would NOT be the end of the world.  She has proven them wrong!  

We backed off the diuretics just a bit so that her lungs and heart can continue to adjust to the new Fontan circulation. Our next appointment is Monday. Thank you all for the thoughts and prayers! 

Unsettled at home

We were sent home yesterday!  After having labs and Caroline's potassium levels increased and a ECHO that showed a good circulation...we waited for over 3 hours to get word that her chest X-ray (done after the second drainage tube was pulled) showed no change from the previous one done the day before.  The nurse practitioners and I decided that I could do exactly the same thing for her at home as in the hospital.  We increased the diuretics for take home and added a potassium supplement to prevent the rhythm issues that happened earlier in the week.  If she stays asymptomatic, I will take her back to the hospital for a surgical post op visit on Wednesday.  So, we're praying for PEE!!!  A lot of it.  We need her lungs to clear up and the fluid around them to dissipate.  I have been warned that we may be readmitted at our visit Wednesday if she looks worse.  I also have a laundry list of signs to look for in case she needs to be taken in sooner.  So far, she's doing great (as far as I can tell)! 

Fontan, check!

We're outta there! Update soon!

Before any car seat sticklers give me a verbal tongue lashing for her harness, we were sitting still and I hadn't adjusted the belts around her incision yet. So. 👅

April Fools!

Every day I feel like I hear, "Just one more day" from the doctor or nurse practitioners.  Caroline had 4am labs again followed by a dramatic and sassy trip to X-ray.  I realized that something was up when rounds were later than usual (after 9), and the NP informed me that her right side (where the tube was pulled days ago) has accumulated fluid along with her lungs. She's on 3 types of diuretics to counter this (Lasix, Aldactone, Diuril) and that in turn is causing her potassium levels to drop dangerously low. So she's getting replacement potassium 3 times a day. It tastes horrible!  Low potassium is dangerous because it makes her heart beat irregularly and at an unsafe rate. Her pacer is there to help with her own electrical system, but since this is a 'controlled dehydration', her body is responding accordingly.  Her drainage was 90ml over the past 24 hours, with the last 12 hours being 40ml. They're looking for a significant drop in number to show that the tube is ready to be pulled.  I think it's fair to assume they jumped the gun a bit with the other one. 

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.