Cornea transplant support

Samuel's story: We are asking for prayers and support for our son, Samuel. It started 9 weeks ago, March 17. We noticed something was just off with his right eye but couldn't pinpoint what until we realized the cornea was actually mishapened. He was diagnosed with keratoconus by his eye doctor. It's a very rare ocular condition, but in it's rarity, is more commonly seen in patients with Down Syndrome. It is where the muscle and fibers inside the eye that attach to the inside layer of the cornea weaken and no longer hold the cornea in the shape/place it should be. So the cornea cones outward. It is generally a slow but progressive condition that initially presents in mid-teenage years and continues to progress slowly for 10+ years. Unfortunately, it is progressing much more rapidly for him. We set up an appt to see a cornea specialist, but this was in the early stages of COVID so it was going to be about 4.5 weeks until the appt. About 4 days before the specialist appt, he suddenly said one evening "Mama, something's wrong with my eye, it looks fuzzy." After an emergency evening phone call and early morning visit, it was confirmed he had developed a complication called hydrops. It's where the inside layer on the cornea cracks and fluid from inside the eye leaks in between the layers. Because this is not meant to happen, the eye/body doesn't know how to get rid of it so the cornea has swelling between the layers and further decreases vision. We saw the cornea specialist April 23. He's been on hypertonic saline drops 4 times a day, a hypertonic saline ointment before bed, and a drop to relax eye muscles twice a day - for the last three weeks. The idea was to let the crack heal itself, the swelling/fluid to be drawn out, and the current damage to resolve or scar over. The cornea specialist told us his condition had already progressed beyond the possible early treatment options, and that his cornea layers are extremely thin. The last option, which she said he was inevitably looking at, was a cornea transplant. She said she physically could do the procedure on him but didn't want to due to his age because his body will reject the transplant. Plus, assuming he doesn't reject the transplant, the healing process can be very slow and drawn out and difficult in a "normal" person, much less in someone who doesn't fully understand how important it is to follow post-op instructions 100% (including absolutely in no way touching the eye until fully healed!). Despite all the medications, he continued to have swelling in the cornea. We saw the cornea specialist again May 11. They attempted to do intraocular imaging to monitor his good eye but they were unsuccessful for now. For the bad eye, she did agree the swelling in the cornea has unfortunately progressed and feels he needs a cornea transplant. She added another drop, a steroid, twice a day to further help reduce inflammation, along with all the other drops. He will recheck with the corner specialist to see how he is responding to the steroid but is scheduled for a cornea transplant May 29. As it will be under general anesthesia, he has to be cleared by cardiology and endocrinology before surgery. So in the next week, we have to get these 2 visits as well as bloodwork. There is still concern for transplant rejection but at this point, there isn't another option. Due to COVID, for three days prior to surgery, the whole family must be completely home quarantined. He will also have to be COVID tested the day before surgery. He will have approximately 16-18 sutures in his eye that will stay for several months. He will have periodic followup visits to monitor healing. For the suture removal, it depends on how he tolerates it. It is usually done in-clinic with local anesthesia and numbing but he may have to go under anesthesia again. There are only a few sutures removed at a time, as the cornea heals. So this is potentially several months time frame before they are all removed. If he doesn't reject the transplant, he will be on drops daily for the rest of his life to help prevent rejection. Rejection can happen anytime from days after surgery to years after surgery. After surgery, we will have vision restored to what it was before. He is being extremely brave and we are very thankful he still doesn't seem to be in much pain.
Anyone that has ever met Samuel will tell you he steals a piece of your heart. Whether he's hugging you and telling you he loves you, calling you 'his Buddy', giving fist bumps, or cracking a joke with you, you can't help but smile and laugh when he's around. His love is unending and unconditional. We are again asking for prayers for God to guide the doctor's hands, for Samuel's quick healing and understanding of how to follow the doctor's instructions, and strength for our family as we face these uncertain and difficult times.
From the bottom of our hearts, we thank you for you support, love, and prayers.