Day 174 - Surgery Scheduled

It has been an eventful month.

R has been in the hospital three times since the first time we took him home. During the times we've had him home, he's been a joy to have as a part of our family. It has been challenging, very challenging at times. It has been a joy to see him be more active, laugh and engage our kids. The reason he has had to go back in is because of his skin. As his stool comes out, it is sitting on his skin, causing it to break down to the point where an appliance/bag cannot sit on it to collect it.

Currently, he sits in the hospital awaiting surgery. The doctor told us when they discharged R for the first time that he would have to come back in for surgery. Because of all that he had went through, they had hoped to do it in the spring - giving him time to recover from being in the hospital for so long and more time to get stronger. Because his skin continues to break down to the point where he has to stay in the hospital, they decided today that they will schedule the surgery as soon as possible.

There is some significant risk to this surgery. The concern is for how he will do during the recovery. We can only pray. Our hope is for a successful surgery and a quick recovery. After that, we would be able to take him home until his next (and hopeful last) surgery - his take down next June.

Surgery is tentatively scheduled for next Monday. Doctors hope to be able to get him in this week. We are praying for a successful surgery and that his recovery goes as smoothly as possible. While we are disappointed we do not get to have him home during the holiday season, we recognize the need for his surgery and look forward to having him home as soon as possible.

Thank you for praying with us. We will update you when we know more about his surgery.