We are so thankful to partner with COTA and will start posting Cohen’s medical updates here!
A few from this week, yes just one week. 😅
On Tuesday (8/12) we had a virtual appointment with Stanford in which they told us both Colby and his brother, Tyler, would not be a match for Cohen as a living donor. We hope to start the process of evaluating another person soon. The living donor team has made a recommendation from our applicants. We are so grateful to have family/friends who have applied and are willing to make such an incredible sacrifice for Cohen.
In this appointment we also heard that on the day Cohen was inactivated from the transplant list due to elevated intracranial pressure (ICP), he received a deceased donor offer (he was only listed for a week!). This was very discouraging to hear as we had to miss out on this offer because of his elevated ICP, but also encouraging to know he received an offer so quickly. We’re choosing to see this as a blessing that he didn’t go into surgery with unknown elevated ICP, which can cause risk in anesthesia and overall complications to the surgery.
There have been many times in this journey where we have seen discouraging “setbacks” that eventually become clear as protection and blessing. This is one of them. It’s yet another good reminder that God is here, working now, and in our future and we are to trust His goodness even in the discouraging hard times. He works all things together for the good of those who love Him.
Cohen is starting 2nd grade next week! He has a few of his best buddies in his class which he is excited about. We have been praying he is able to go to school without any medical intervention, but we are starting to see a decline in his oxygen saturations throughout the day. His difficulty with breathing during activity has worsened even in the last week and a half with drops into the 80’s and occasional need of oxygen during the day. Nampa Christian has been a great partner with us for extending our eyes to him while he’s is away from us… even though it will be heavy on our hearts.
He has an important appointment on 8/26 to check his eyes for continued evidence of elevated ICP. Please pray with us for no signs! If that looks good he will have a repeated lumbar puncture to check his ICP levels and if that looks good he will be re-activated on the liver transplant list. 🙏🏼
He also has a repeat lung perfusion scan next week which will help us know how much worse his Hepatopulmonary Syndrome may be getting.
Thank you all for your support and love to Cohen and our family!
#couragelikecohen
