Wednesday, May 6, 2009

Sorry for not posting much recently. We have had some very encouraging days. As you saw before... Goodbye chest tube. The two days prior, he hadn't drained anything out of his chest tube.  Then they started his feeds at 1cc (1/30 of an oz) per hour and slowly went up, hoping it still wouldn't drain. It didn't. When we came in this afternoon, he had a new nurse, and we asked her how his morning had been (we slept in and went running together). Her response: a shrug and a non-chalant, "not much... he got his chest tube out." We were like, "are you kidding?!?!?!?!? Not much?!?!??!? That's huge !!!!!!!!!" 
His cultures are still showing no yeast. So for now, it's praying that no fluid builds back up and he can keep his chest tube out. He's up to full feeds (12cc an hour), "full" is a little deceptive. He's having a little trouble where they're putting his Lovanox(blood thinner for his blood clot) in. Both of his little legs have huge knots on them where hematomas have formed (bruises that look like swollen pockets of blood). But he has to have that for at least a couple more weeks, so they're trying to figure out other options for him. 
He is losing extras with each day though. Today, the chest tube and a number of other tubes. One by one, we will hopefully say good-bye.
I changed his trach out today for the first time. Not as intimidating as it seemed. I have learned how to suction his trach to keep his airway clear,too. Over the next few weeks, we'll be learning a lot more of all that. Quite a few nurses who have worked with us are going to sign up to do home care for Shepherd, which is so neat. We couldn't be happier about that. 
They have even started talking about moving us up to the cardiac floor, out of the ICU. We'll see. It' so hard to know how to take good news around here. We take it all with a grain of salt to say the least. It sounds so pessimistic, but we just know how fragile everything is. 
At the same time, Noah had to remind me today that just because I love big hoop earrings and scarves does not mean I am a fortune teller. And just because his recovery has been difficult doesn't mean it will  be difficult. True.
 It's crazy how we try to protect ourselves by not getting our hopes high. Not only does it not work, but it keeps us from expecting great things from God.

Speaking of not expecting great things- we are so grateful for the kindness of God, shown to us in so many ways. For instance-
Last night we attempted a date, and the restaurant we tried to go to was closed (I see God's sovereignty in everything sooooo much more from this whole experience). So, since we stayed too late talking with the nurse and the restaurant was closed, we went to Maggiano's. We had a wonderful dinner and got to have great conversation with out waitress. When we got our bill, it was completely free!!!! We couldn't believe it!! Then the manager came over and we talked with him for a while. He offered to bring us meals up at the hospital anytime and to throw a welcome home party for Shepherd when he gets out of the hospital!!! It was crazy.
We left there just shaking our heads, saying, "God really loves us."

Things I'm happy about: Shepherd's doing well. My favorite preacher is teaching on Sunday;) We are dedicating Shepherd on Mother's day, at church-minus the Shepherd. My daddy is back home from Alaska for a month. My parent's 32nd Anniversary is today - Congratulations on having the most beautiful marriage of anyone I know, mom and Dad! Thank you for spending this very special day having water gun fights with 2 and 4 year old little boys who think you hung the moon, instead of a candle light dinner. You guys are remarkable!


Anonymous said...

Yay God for all of the good news. He's doing so great and it's wonderful to hear all of the progress that he is making and how God is working in your lives. Can't wait to see you on Sunday!

Anonymous said...

Oh Steph,

My heart is so full at all of this good news. I love you all so much.


Betharoo said...

Wow! How encouraging! Still praying for ya'll!

Anonymous said...

Love, love, love this boy!
I am so happy for you all and the positive steps he has been taking. Praise God! Thank you so much for keeping us in the loop.
And thank you for being such a clear, bright, shining light for our Father. You inspire me more than you could ever know.
Peace and Love to you all-

Greene family said...

How encouraging!! Praise the Lord! We are rejoicing with you and can't wait to also celebrate Shepherd's homecoming with you! God is so good! What a testimony you have been to my heart!

Amanda Greene

Sylvia Goode Basham said...

It's so good to hear all the good news. I'm looking forward to hearing your favorite preacher on Sunday as well :-)

Anonymous said...

You need to pull your head out the bible and pay attention to your child and his life here on earth. 100,000 people a year die of medical errors. My son had the same defects - simple repair but with a hospital acquired infection. Lifelong obligation to pay attention to what doctors you go to, increased risk of early coronary artery disease, aneurysim and arrithymia. If you don't pay attention and learn your medicine rather than your bible you will end up like the rest of the stupid people on the internet with another "angel". I read journal, pediatric books and have tons of information on my son's risks, adopted heart healthy diet, moved from the toxic place with unhealthy air and water and actually learned something to help him in this life not the next one. Good luck because reading your blog made me sorry for your family.

Stephanie said...

To Anonymous:
I am sorry that your reading of this blog gave you the impression that we have chosen to ONLY pay attention to what happens after this life. I, like you, consider it a great privilige and responsibility to be as informed as possible. I have gone to great lengths to make well informed decisions about Shepherd's care (asking a million questions, getting numerous opinions, reading medical journals and doing as much research as I possibly can pertaining to his particular issues).I know very well that the staff caring for Shepherd are merely humans who do commonly make mistakes. I do what I can to be informed but I am grateful that I know they are only human and I trust that Shepherd's creator is ultimately in control of even their actions. I believe my God is bigger than even their mistakes, and mine. Thank God.
I also look forward to being very pro-active when it comes to health when he gets home. I do clearly see these things as my God-given responsibility to my son.
At the same time, physical health is not all I have to offer my son. If it were, I would feel very out of control, as my human abilities, as well as anyone elses, are limited. I will do all I can for him physically, but I am grateful to know that he, as well as I, am made up of more than just a body to care for. We, as human beings are also made with souls. And I consider it an even greater privilige to be diligent about caring for him spiritually (praying for him, seeing his life as more than just a physical accomplishment, seeing God use his small life to accomplish things that last longer than right now).
This being said, I do not think that being diligent to care for him physically is at all at odds with my care for him spiritually.
I am also sure that your child has benefited greatly from your vigorous efforts to make sure he has the best you can give him. Keep it up.

Meltonfamily said...

Stephanie and Noah,
We are so happy to hear how well things are going. I (Donna) work in RTP and would be glad to bring you lunch or anything else you need any time. Please let us know how we can serve your family. We'll continue praying.

Donna & Jeff Melton