Another 'stable' day

We put stable in quotes because, honestly, we are learning that stable is truly a minute by minute description. Today was yet another mostly stable day. When we got to the hospital, we were told Charlie's ECMO machine had developed several clots. They needed to replace the machine before the clots traveled to his body. He tolerated the transition well, not needing any extra medication for support during the three minutes he was off of bypass. They are now beginning to very slowly wean him from the bypass - turning the machine down ever so slightly every two hours. We are hoping he is ready for this!

The second issue Charlie had today was that during the hour of CPR and chest compressions, his chest wound came apart again (just the the tissue, not the bone). The wound had been oozing since Saturday. Dr. Sinha considered placing a wound vac on it, but decided instead to suture it back up. Unfortunately, this caused a little extra bleeding, but nothing serious.

His second head ultrasound came back normal yet again, but we are still pressing for a CT scan of his brain so we can be better prepared for what his neurological function may be. He is not putting out a lot of urine, but the mindset is that since he is still putting out from his chest tube and draining from his chest, they are not too concerned yet about kidney function. While he is sedated on morphine and versed, as well as on a paralytic drip, he is back to moving a bit and opening his eyes at times. While we are thrilled to see movement, it is hard to see him so beaten and on bypass and know he is awake. While the medical knowledge supports the evidence he is not in pain (vital signs, etc), as parents, we fear that our little boy is hurting.

As a nice treat, Josh's parents brought us lunch for his birthday celebration. Not much of a celebration, being at the hospital, but we shared good food and some good times in our little family room.

All in all, another 'stable' day indeed - a bit of rest for us as well as for Charlie. As much as we are beginning to get tired of the word, we are hoping for yet another 'stable' day tomorrow.

Love,

Josh and Mina