Charlotte is now fully awake, and we have been seeing so many smiles from her. They inserted an NG tube through her nose to her stomach so she could receive food, water, and medicine and we saw her perk up immensely.
Her body is still having difficulty removing fluids, so a temporary catheter was inserted on Sunday to help her body drain out the water. They removed the catheter yesterday in hopes that she would independently void, but unfortunately, she couldn’t. The doctors are trying to figure out if the water retention could be from constipation, medications, or, more likely, because of her regression from Battens. Either way, Charlotte will be sent home with a catheter which we will use and monitor daily.
Charlotte had her swallow study test yesterday. Even before testing the doctors wanted to move ahead with g-tube surgery, so the testing results mattered little. Her surgery is scheduled for this afternoon; she will be heavily sedated and put back on the ventilator while she’s in surgery. The doctors want to keep her on the ventilator until she can breathe on her own while the sedation is wearing off.
Prayer requests:
- For a successful surgery this afternoon and quick healing
- For Charlotte to wake up quickly from the sedation and breathe on her own
- For her to void independently thus removing the need for catheters
Thank you so much for all the support and prayers! David and I have such overwhelming peace during this difficult time with our little girl. Our trust belongs in the God who formed the Heavens and the earth, who makes mountains shake and waters roar, and who vanquished death itself. We believe God created a special purpose and plan for each one of us, so we have no need to fear or doubt while we are experiencing this trial. We don’t bear this burden on our own nor face this hardship alone because of our Lord Almighty. He holds us in His hands and covers us with His wings. He lifts us up out of the pit and miry clay and sets our feet upon a rock. He holds our right hand, and we will not be shaken. So many promises He has lovingly given us to guide us through this test of faith and patience. God is always, only good.