Today is Sunday, Briana's fifth day on ECMO. We just visited her this morning and received the updates from the doctor. Overall, she is still OK, but she encountered a 'bump in the road' last night. I will try my best to explain things, I have still not completely grasped what we were told. The cardiologist, Dr. Smith (who by the way, is a truly wonderful and compassionate doctor) did another echo on her heart this morning and found that the pressure on the one side was very high. They administered a different medication to open up one of her valves and increase blood flow, and in turn alleviate pressure. They will have to perform another echo either later today or tomorrow morning to determine if and how the valve responded to the medication. It is certainly discouraging news, but we are not letting this get us down. CDH is unfortunately a volatile disorder, which doesn't allow us to get ahead of it at all. We just have to continue hoping for the best, and handling these setbacks in stride. We certainly have to remember that this is still the beginning of the road, and we face many hurdles ahead of us.
On a happier note, we were able to spend some time with Mackenzie yesterday. Angela's aunt and cousin who were watching her brought her to the Carousel Mall here in Syracuse. Although it is very hard to leave Briana, it is just as hard to not see Mackenzie, so we are trying to balance it out as best we can. As were we, she was very excited to see us. We all took a carousel ride together while we there. Although it was brief, it was obviously very uplifting to see her. I am still amazed and thankful that she is handling this all so well. I don't know how we would handle it if she wasn't.
I will continue to update, please continue to pray for Briana. Thanks as always for your support.
Ang--you are the most positive woman I know. You can do this, and I am sure Briana got a little bit of your positivity too! Praying for you guys, let me know if you need anything! I am so glad you guys got to spend time with Mackenzie!!
ReplyDeleteErin
Pulmonary Hypertension is something that comes and often goes in CDH babies. Drugs like Viagra (if you can believe it ... but they call it a different name when they give it to babies) really helps. Also, is Briana on Nitric Oxide? That is what Dakota was on for her pulmonary hypertension. They have a lot of treatment for it and it is almost expected in CDH. I hope it lessens today so Briana can start her trials off ECMO. It sounds like she has had a relatively good run on ECMO thus far, so don't lose hope and remain positive. These are just the bumps in the road that make us appreciate our babies so much more when we get to bring them home!
ReplyDeleteLots of prayers and hugs,
Jennifer
Mom to Dakota
12-25-2008
RCDH/ECMO survivor