Update

So, I realize that I still haven't posted an update on Kai after our last appointment at U of M. For those of you who have texted, emailed, or messaged me wondering how he's doing, we appreciate all of your love and concern for Kai! I promise I have not been intentionally ignoring you. I actually have been sick and feeling completely exhausted. We have been living in "survival mode" for the past 9 months since Kai has been home. My body couldn't handle  "burning the candle from both ends", so to speak, anymore and pneumonia has settled in. I have never had this before now but can say with absolute certainty that it is miserable! 


Unfortunately, life doesn't stop--especially life with a kiddo with significant health issues--when mom gets sick. So, I've been trying to focus my energy on doing what has to get done lately. So, emailing and texting have gone by the wayside. I should also apologize to our neighbors for our home;hopefully it does not look like it, too, has also gone by the wayside...scattered toys and bikes, dead flowers by the mailbox. Oh, and this...

Sam and Kai decided to make shakers with dried beans last week. Apparently, my precious children decided to throw the leftover beans into the yard. So, until I feel better, I guess we will have a garden. Of beans. In the front yard. 


Anyway, here are some details about Kai's appointment after he had some surprising cyanosis. We know that this will not share all of the details of this part of his story, but here is at least some information. He ended up with a battery of x-rays, pokes, and ECHO trying to figure out what was causing our little guy to turn blue after surgery. According to the cardiologist, the ECHO looked good as far as the surgical repairs are concerned. There are, however, some concerns about collaterals developing and rupturing. 

Because of all that he has experienced medically in his short life, paired with coming home only 9 months ago, we not only have to take his health conditions into account when making decisions, but also his mental and emotional well-being. For that reason, we are opting to do nothing but monitor him until August. No MRI. No heart catheterization. He needs time to just be a child... at home...and continue bonding. So, unless there are signs that things are negatively changing or progressing, we will wait until August to do anything else (aside from scheduled blood work and things of that nature). 

So, on August 12 we will head back to Ann Arbor and, hopefully, nothing surprising will come up before then!