CHD sucks

I hate CHD.  I hate that her future is a big question mark.  I hate that transplant is a possibility.  I hate that I think about what would happen if we lost Lucy to this disease.  I hate the unpredictability.
When you can go from this:

To this in a matter of six hours:

But with the bad come the good.  And we have a had A LOT of good: two years free of hospital, no developmental delays and a healthy brother (which Lucy does not like all the time).  And we do not take any of it for granted, even the tantrums!

Yesterday Lucy went to the cath lab for what originally was diagnostic.  Prior to walking her down, Dr. Patel told me that they planned to stent her left pulmonary artery hoping to lower her lung pressures.  Around noon, the nurse call to say the stent was placed and everything went according to plan.  Usually she would be up in her room about an hour later.  When 2 pm came and went, I started to worry.  Shortly after, Lucy's nurse came in and said they found a blood clot.  To break up the clot, Lucy was placed on EKOS (catheter assisted thrombolysis).

Here's how it works:

a catheter is guided through blood vessels to the location of the blood clot.  The catheter will deliver special clot dissolving medicine called thrombolytics to help dissolve the clot,  The new device called EKOS, will also deliver simultaneously ultrasound energy to mechanically dislodge and loosen up the clot to enable lower and safer doses of the thrombolytic drugs to be used (credit: Brigid Shelton).

The ultrasound helps to disperse the drug allowing us to use a lower dose.  This machine also speeds up the time it takes for the clot to dissolve.

The catheter was placed in her neck.

In order to keep it in place, it was secured along her entire torso.  They also have her on sedation, pain and a paralytic medicine to keep her comfortable and still. 

The EKOS machine can run anywhere from 24 to 48 hours.  After the cath lab, her left leg appeared blotchy and they were worried of a possible clot.  Also because of the medication there is a possibility of bleeds.  They did ultrasounds of her leg and abdomen to ensure everything looked okay. 

 Overnight Lucy had some issues with blood sugars, blood pressures and heart arrhythmia's.  Her medication was adjustd to help with arrhythmia and blood pressure and some insulin was given to regulate her blood sugar.

Today Dr. Patel will do an angiogram bedside to check if the clot has been dissolved.  If it has, they will remove the EKOS machine.  Then re-evaluate the plan for today.  Once the machine is removed, the next step would be to ween her off ventilation and then bring her off her paralytic and sedation medications.

While some of these pictures may seem as if Lucy is in critical condition, the doctors have assured me she is stable.  Due to the turn of events, we are back at square one.  We will have to start diuresing while watching sodium, potassium, calcium and creatinine levels.  I am unsure how this will impact surgery, but we will keep updating as we have information.