Happy Anniversary

We apologize for not updating the blog in a couple of days. We are so grateful for all the support we receive from each one of you and hope that you all understand how tiring this whole process is for us to go through.

While I know you are all anxiously waiting to hear the latest on Andrew's progress. I first have to take time to tell my incredible husband thank you and happy anniversary. It was five years ago today that I married my best friend. The vows we took on that day are promises that I am so grateful for today: in good times or bad, in sickness or health, for better or worse. We had no idea five years ago how much we would be going through exactly five years later and how those promises would really be tested. These latest trials have brought us even closer together. While I would not wish the latest experiences we have had on even our worst enemy- I am forever grateful that I have my best friend by my side and want him to know how much he is appreciated and loved and admired! Happy Anniversary!

Now for the latest updates on Andrew...

Andrew is making more urine now although the lab values measuring his kidney function have not come down yet. The nephrologist believes that his making urine now is a good sign and that hopefully the still elevated numbers we are seeing are the results from what was done to him over the weekend and that those numbers will eventually decline now that we are giving him the fluid he needs and actually giving his kidneys a reason to function.

We attempted to trial off ECMO again yesterday. It was the smoothest trial off I have seen and the staff did a fantastic job! Unfortunately, Andrew does not have enough lung tissue yet to be able to oxygenate his own body. His blood pressure and heart rate looked great and his pulmonary hypertension was not too much of an issue. His monitor did not look bad being clamped for 1 1/2 hours, but his arterial blood gases were more on the devastating side. He does have more of a pleural effusion on the left side that they will most likely drain off today and they will also try another dose of surfactant and hope to trial off again tomorrow. If he does not successfully trial off tomorrow, then the plan is to switch back to VV ECMO (lung bypass rather than lung/heart bypass) which has less risk of complications. He does have two clots on the arterial side of his circuit now which is very scary- they are watching them closely. He is also bleeding from his ECMO catheter insertion site and they will be addressing this as well today.

I knew this journey was going to be difficult, but I truly had no idea it would be this difficult. My prayers have become more like begging and pleading that he will be able to survive this. I thought that by this point, the doctors would be having "the talk" with us, but they have not. In fact, they said yesterday that they were encouraged with his progress and hope that his lungs just need some more time. Andrew is writing the books on how this is to be done since this is not the usual CDH pathway due to his heart defect as well- the good news is that his heart is doing really well now!

Thanks for all the support you have given us! Also, a special thanks to all my co-workers at the ASC for the incredible gift bag filled with snacks and gift cards for meals, for our great neighbors who left a gift basket at our house yesterday filled with yummy Southern Season treats and a much needed coffee gift card, to the Cherubs Organization for the totebag filled with really thoughtful and much needed PICU survival items, to Brendan and Cody for continuing to mow our lawn, Dr. Ames for getting iv access for us when there was none to be found, and to Kathy for the gifts and for giving us all the many chocolates to be able to give to all the wonderful staff taking care of Andrew!


Need to go get ready to see my sweet baby boy this morning. Hope you all have a good day!