February

This look pretty much sums up how Kai feels—how we are all feeling—this morning. Since I haven’t updated for a while, I’ll fill you in as to why the strong emotions!

For the past several weeks, Kai has been experiencing GI bleeding issues. We’ll spare the graphic details of what that entails, but it has become significant enough that we have seen GI specialists at Mott Children’s Hospital this past week. Following our appointment last Friday, we were sent directly to pre-op/procedural readiness. For those of you familiar with Mott and the 4^th floor, at this point the frog mural invokes a sense of panic in Kai. He is definitely aware of what “comes next” when visiting the OR.

Because of some concerns about Kai’s pulmonary issues and how general anesthesia would affect functioning, his procedure could not happen immediately, but was scheduled to take place this upcoming Thursday (February 11). This gave us time to help him prepare for what would be happening the next time he did step out of those 4^th floor elevators.

Then I got the call (ok, multiple calls) yesterday that his procedure would be changing. New date, new procedure, new surgeon. At this point, we would like to keep the reasons for the change personal, but wanted to share that Kai will be undergoing a polypectomy on February 29. Our hope is that this can be done through colonoscopy and esophagogastroduodenoscopy (GED).  I guess this gives us a few more weeks to worry  prepare for what this means for his little body.

As always, prayers are appreciated!

In light of this, however, during Heart Month, we celebrate the vast improvements in Kai's heart functioning. Next week is CHD awareness week and we can't believe how far he's come; last year we celebrated CHD week in the hospital with heart issues! We know that his heart and heart surgeries are complicated and continue to impact his body in many ways, but we are so thankful for a talented and skillful heart team that are helping him overcome so many medical hurdles!