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.