Lily is the Boss

If there is one thing the ICU doctors have learned about Lily since they first met her in July, it is that she is the boss!  Children who have Lily's type of heart defect, especially with the Fontan, do not do well overall while they are intubated and on a ventilator.  The flow from the vent really messes with their pressures.  However, Miss Lily's body is insisting, much to the doctors and surgeons dismay that she is perfectly happy on the vent.  Except for when she "wakes" up and tries to pull it out, while violently shaking her head at me...all the while demanding water!  Yes, this is true <3

The surgeons and hematologists decided that using the TPA to attempt to break up the blood clot in Lily's heart was a bad idea.  Since the clot is quite large at 6mm's, they all felt that the risk was way to high for her to suffer a massive stroke and death.  After running an additional blood test this morning, they discovered that Lily has a hereditary disorder called antithrombin 3.   Antithrombin 3 deficiency is a disorder of blood clotting.  People with this condition are at a higher than normal risk for developing abnormal blood clots.

So for now, Lily will remain heavily sedated and intubated.  The hope and goal is to get her off the ventilator by tomorrow evening or Friday.  Tonight, they decided to turn off the cooling blanket and see if she can maintain her stats as her temperature begins to rise.  Fingers crossed, and prayers sent up!

In the day when I cried out,

you answered me, and made me bold with strength

in my soul.  Psalm 138:3