Really sorry about the delay in posts. We're still at home and still hanging in there. Unfortunately, the same cannot be said for our internet connection. Every time we think it's working for good, we say "good, we can post an update tomorrow!" Then, it goes down again before we can catch up. I guess it's a good thing to say that I didn't even realize two full weeks had passed since our last update!!
We have only had some therapy sessions and labs in the that time. We finally were able to schedule something with Baylor, only to be told we'd have to reschedule. That's back on hold now, unfortunately. ECI therapy sessions have been good though. We haven't seen any real improvement, but he just started. This will be a long progression. We also met with the dietician from ECI last week. I'm excited to have her help educate us on foods that might help/hurt Keegan's delicate GI system and give us pointers toward getting his tube feeds down to bolus feeds.
Labs last week were liveable. Same ol' problems. Unstable meds, unstable liver levels, some unstable electrolyte levels, and blood counts that are kinda sorta stable. It seems his white blood count is starting to drop more in between shots. We'll have more labs on Monday and discuss it more then. We have a FULL day at cardiology clinic on Monday - labs, chest xray, EKG, echo, doctor visit, and breathing treatment. Whew, exhausting just to think about it.
PRAYER REQUEST!! Please, please, please keep sweet Hannah in your prayers. You may remember that little Hannah received her heart just before Keegan was born and was in the hospital this past fall with RSV. When Keegan was little, she used to peek under the blanket covering his infant carrier at the hospital and say "that's my widdle bruh-der" (her brother, Cooper, was born about two weeks before Keegan). She always has something to say or do to make Keegan and us laugh. Hannah had her first rejection episode last week, just a few weeks shy of her second transplant anniversary. Gray and I went to the CVICU tonight to visit, and Hannah is stable and extebated. She is struggling with the pain medication wean, and she is heavily immunesuppressed. Please, please pray that she continues to improve and that her heart function returns to its previous levels when this is over. This is our first personal experience seeing a friend go through a rejection episode, and it's hitting a little too close to home for us. We can't imagine what her family is going through, and we don't want to really. Yet, we are encouraged by her progress, and we can't wait to see Hannah's smiling face again soon! Big hugs, little one!
Lastly, please check back on Keegan's photo and video site soon because we're hoping to have enough internet connection to post some great new photos! Thank you, thank you for your continued support and love for our Bug. We simply can't put it into words!