Bursting at the Seams

A Step in the Right Direction...

{Hughie's cute foot and funny little toes}

{Little Hughie surviving with help from lots of machines...getting one of his many chest x-rays}

The weekend was good to us. Hughie started the indomethacin to close his PDA. He received three doses 12 hours apart and the morning after the final dose he had an echocardiogram to check his progress, this was yesterday. I've been nervous all weekend about the medication not working and therefore some big decisions about surgery for our sick little mister. When I got to the hospital yesterday, I was holding my breath waiting to talk to Dr. Yost. Part of me didn't want to talk to him, because I wasn't prepared for anymore bad news. We weren't expecting the PDA to close completely, just to get smaller. The indomethacin is very hard on the kidneys and often causes them to shut down. If the PDA isn't getting smaller, than treatment with the indomethacin would stop. As Dr. Yost walked in to talk to me, I felt like my stomach was in my throat. He gave me a smile and said, "The PDA is smaller, and is now a moderate size instead of large." Relief spread throughout my entire body. Hughie is responding to the treatment!! His kidney function is slowing down, but Dr. Yost is hopeful it will return once his indomethacin treatment is done. Because the PDA is smaller, Hughie will get three more doses 24 hours apart. We are hoping the PDA will either close completely, or become small enough not to be significant to Hughie's blood flow. Hughie heart function looked better as well, so his milrinone is turned off and his dopamine has been between 3-5. These are both good things. They have also been weaning some of his ventilator settings because his chest x-rays have looked the best they ever have (some have looked quite horrible). I feel like Hughie is finally making some progress. He is still way too fluid overloaded and very edematous and puffy. Because his kidney function is down, he probably won't be able to get rid of the fluid until after he is off the indomethacin. They have fluid restricted him even more in hopes to help him start dropping some weight (he has gained over 2 lbs in just fluid...not good).

Yesterday, I felt so blessed and loved. Hughie's progress comes in a large part from all the love and support he and our family has been given by so many people. Thanks for your thoughts and praying and fasting for our little guy. I know these things make a positive difference in my life...and I know they have blessed my sweet little Hughie's life. As I look at my son in his hospital bed, I am often overcome with sadness and heartache thinking about the pain he must be enduring. I wish I could just take it all away. It has made me think a lot about the Atonement of Christ and the immense heartache Heavenly Father must have felt watching His son go through such intense pain and suffering. But it wasn't in vain...and I know because of Christ's Atonement, I am able to get through the pain this world often brings. Thank you, Hughie,for reminding me of the weightier matter of things. And thanks again, to everyone for keeping us close to your hearts.