Owen's medical records were just sent off yesterday to Stanford and Seattle Children's. Hopefully we'll be making a trip in the next few weeks so that we have a plan for his care. I don't enjoy waiting. Owen's heart is failing, he's maxed out on all his oral meds and we pray that he just stays stable and "okay". I was reading through Owen's medical notes from his last cardiology visit and it doesn't quite sink in until you read it on paper. "Mom is aware that ANY little sign of decreased heart function (sweating, puking, diarrhea, labored breathing, fatigue, increased need for oxygen) and we will be admitting him, administering IV medication (Milrinone) and facilitating transfer to transplant facility. " I am aware. I just don't want it to be true.
Tuesday, April 14, 2009
Wiped Out
Owen is wiped out. He got through about 10 minutes of physical therapy before having a complete meltdown out of exhaustion. Now he sleeps. I forget how sick he is, until days like today, when his body just crashes. Today we he will rest. 
Owen's medical records were just sent off yesterday to Stanford and Seattle Children's. Hopefully we'll be making a trip in the next few weeks so that we have a plan for his care. I don't enjoy waiting. Owen's heart is failing, he's maxed out on all his oral meds and we pray that he just stays stable and "okay". I was reading through Owen's medical notes from his last cardiology visit and it doesn't quite sink in until you read it on paper. "Mom is aware that ANY little sign of decreased heart function (sweating, puking, diarrhea, labored breathing, fatigue, increased need for oxygen) and we will be admitting him, administering IV medication (Milrinone) and facilitating transfer to transplant facility. " I am aware. I just don't want it to be true.
Owen's medical records were just sent off yesterday to Stanford and Seattle Children's. Hopefully we'll be making a trip in the next few weeks so that we have a plan for his care. I don't enjoy waiting. Owen's heart is failing, he's maxed out on all his oral meds and we pray that he just stays stable and "okay". I was reading through Owen's medical notes from his last cardiology visit and it doesn't quite sink in until you read it on paper. "Mom is aware that ANY little sign of decreased heart function (sweating, puking, diarrhea, labored breathing, fatigue, increased need for oxygen) and we will be admitting him, administering IV medication (Milrinone) and facilitating transfer to transplant facility. " I am aware. I just don't want it to be true.
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20 comments:
Hang in there... I have been thinking and praying for you all a lot! Have a hug!!
Oh Andrea, stick in there. You have so much on your plate right now. Please let me know how we can help when you visit Stanford and if you end up at Stanford. Even if you need something last minute, that day, I will be close enough to help. All our prayers and love for little Owen and for you. 925 457 6909.
I just want to scoop that boy up and snuggle him. I hope you get everything planned out soon so you can feel better. We pray for you guys all the time.
My heart is with Owen. My prayers are with you all. :) I hope that he gets some well needed rest, and that you do as well. God will definitally look out for him, Owen is after all such a precious angel.
I don't want it to be true either. Here's to little Mr. Owen's heart continuing to function as long as it takes for him to get his perfect new heart.
Jen
Some days it just hits you in the face. Sorry today was one of those. Praying for you guys!
Thinking and praying for you!!! Please let us know when you're coming to Seattle...we'd love to come visit/help you out however we can. Give Owen a hug from us, I'm sorry for these rough days- hang in there!
Love,
Katie
A lot of times we don't want to "see" the negative.....Because we are too busy enjoying the positive!.....And that's OK....
I love pictures of babies sleeping, so peaceful...
Hugs!
Alyson
What a tough day! I'm praying for you all.
Cxx
I do hate reading this because it is such a reminder for me of Owen's tender little heart. I am sure it is so difficult for you, but what an example you are to me and so many of keeping a positive attitude and having faith. We pray for you and Owen and your family daily and I know that he will whole and healthy before long.
Love, Keisa
Sometimes it is best to put it out of your mind and take one day at a time. You have been making wonderful memories and are a very sweet,loving mommy. Reading medical charts can be very scary, but knowing little Owen is getting the best care possible, should put your mind at ease. Sleep is the best medicine:) He's such a sweetheart and please feel all the prayers coming your way.
I think I feel like Owen today!!! I'm pooped!
Always praying for ya'll!!!! :)
We are praying for you and your family. Hang in there. As hard as it is, just remember that it is in God's hands. Stay strong Owen.
i am so sorry. i hope that all goes well. you took some great easter pics! owen is so adorable and i hope them people sent off his paperwork to Seattle. they better have. the quicker stuff gets done, the quicker owen can get on the road and get his transplant. poor baby. more prayers comin' your way owen.
I have been following your story for quite a while now, but have yet to comment. I saw Owens smiling face on Annabelle Butcher's site and his enormous smile just drew me in. He is so completely and utterly adorable!
I am not a heart mom and so I cannot relate to your emotions from that standpoint. However, I do struggle terribly with worry and I despise waiting more than anything in the world! So, in a very small way, I can relate to your post today. It brought tears to my eyes. You are such a strong advocate and special mom for little Owen... he is so lucky to have you! I love reading your posts. You seem to have a way of making every day fun and special!
I just wanted to let you know that I am praying for little Owen's heart... and for your entire family. After a friend of mine had a baby born with a CHD, I've become so smitten with these little heart babies. Through them, and through the strength of their wonderful parents (like you!), they bring hope, inspiration, and a good dose of thankfulness to all who "know" them, even if we only "know" them through a computer screen.
I know that the waiting has to be almost unbearable, but I hope you can find some rest in knowing that many people are praying for you while you wait!
Praying for you in Kansas!
Danielle
I can only imagine what you are going through. Praying for you and your entire family.
Many hugs and prayers for you and your family...
Kristin
NE Ohio
Sweet Owen..he is so tough! We will continue to pray for you and your family. You are doing a great job Andrea!!
Many Blessings,
Amanda
Hang on...praying for you guys!!!!!!!!!!
Poor sweet little man. I hope they get him going at Seattle or Stanford soon!
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