Baby Lange HLHS
Gary, Katherine and I will be driving back up to Denver on Tuesday for Katherine’s Heart Cath. This will tell us why she cannot keep her blood oxygen level above 75 without the help of oxygen. Other than that, Katherine is doing well, she had a great Easter with her cousins hunting Easter Eggs! She is now rolling over constantly and is on her way to crawling. We have been in hiding during the flu season.
Gary is still driving for Uber trying to save up for us to open a version of Kasey’s. Casey is staying home with Katherine for the time being and is volunteering with a newly established nonprofit organization called Lexiam Heart Foundation. The mission of Lexiam is to help families in New Mexico who are affected by Congenital Heart Defects, such as Katherine’s condition, HLHS. We are also looking into starting a NM chapter of the Pediatric Congenital Heart Association (PCHA).
We have been home for over a month now and we are starting to adjust. We have met the team in Albuquerque and we are confident in the care we are receiving.
Katherine is still on oxygen as they are concerned about her spo2 levels and we will go back to the dr at the end of the month to see If the levels have improved. If the levels have not improved we will go back to Denver for another heart catch and see If they can open things up more so she will have better o2 levels and then be off oxygen. They also are concerned as her tricuspid valve is regurgitating and if that gets worse they will have to do another open heart surgery to fix otherwise if it stays the same they will wait and fix it during her 3rd surgery in a few years. We cannot thank everyone enough for the support as it is such a rollercoaster ride and it definitely takes a village.
As most of you know we have closed Kaseys and after a dramatic and scary day Kasey and Katherine were airlifted to Denver,CO a few weeks ago. Everything since has been fine and Katherine is active and growing like she is suppose to. We have been hanging out at the Ronald McDonald house waiting her birth which should be sept 10th or with in a day or soon afterwards. Please keep us in your thoughts and prayers as its going to be pretty hectic in a couple weeks. We will try our best to keep you all up to date either here or thru our email newsletter. thanks again