We began the week with optimism that it would be one full of progress and improvement. While Logan is slowly showing signs he's getting stronger, this is turning out to be the most difficult week of our journey thus far.
First of all, I truly feel that your prayers for Logan are working. He is getting some nutrition (Pediasure) through a feeding tube that was placed down his nose, all the way into his intestine. This way, his stomach is bypassed to allow more time for the g-tube site to heal. So that's praise #1. Second, we have begun to slowly lower his Versed sedation medication. This will hopefully allow him to begin breathing better on his own and allow his digestive system to get moving again. The fear with lowering the sedation is that these meds are aiding in seizure control, and reducing them could cause breakthroughs in seizures. So we're praying that does not happen. We still have a way to go before he is off the ventilator and we even begin to think about going home. But we are thankful for the baby steps at this point.
The difficult part is that we received results from Griffin's genetic test yesterday. Once again, we received news no parent should ever have to. Griffin is affected as well. He has the same genetic mutation as Logan, so he has Alper's too. Other than being slow to walk on his own, he has shown no signs of developmental delay nor any other symptoms, so we were certain his test was going to come back negative. We are planning to consult with Logan's doctors to see if there is anything preventative we can do right now, other than wait for his symptoms to appear. Going through this with Logan has been just about all we could handle, and the thought of doing this all again and seeing another child suffer is unbearable. Griffin has been our joy and our hope, making us smile at all the right times. To say we are heartbroken and devastated would be a severe understatement. While we know in our hearts there is a greater purpose at work, we are really struggling to process at this point.
As always, thank you for your prayers. We need them now more than ever.