I do believe that today is the first time in 6 days that I can say, "it's been a good day". It's truly amazing how much can happen in a week! Two weeks ago, we would have never guessed that Ethan would code. Now, a week out from "the event" (more doctorese) we can't believe the progress he's made.
Today is also the first day I've looked at him and thought "that IS my son". He's not looked like himself, or acted like himself over the past 6 days, so today was HUGE for me. It's so much different being in the PCICU this time. This time I know who he is, how he's supposed to act, what he's supposed to like and dislike. I didn't know any of that before, and that's partly what makes this go-round so much worse.
The biggest news from today is that Ethan was successfully extubated! He went from the vent to a nasal canula and has been doing great. I think that definitely helped out with him looking more like Ethan. It's amazing what seeing that upper lip can do!
As if that wasn't enough to make his mama happy, I was able to HOLD HIM for the first time since he coded. There were so many emotions that came along that; I can't even begin to describe the moment. For all you Mamas and Daddys out there, go take an extra 5 minutes to cuddle with your child. You never know when that privilege may be taken from you.
The other big update is in regards to his brain activity. Last night there was slight reason to believe that Ethan had a seizure. The team has since decided that wasn't the case, but an hour long EEG was repeated this afternoon to monitor his brain activity. He also went down for a CT scan this evening to get a look at his head from that perspective. We won't know the results of these tests until tomorrow, or potentially later, but I'll be sure to update once we have a better idea of what's going on.
It's difficult to think about what a traumatic experience this was for him, or what his life might be like in response to this arrest. I am an impatient person by nature, so just waiting to see how his heart will function, or what his cognitive development will be is TORTURE. I want to know that my son will be okay. I want answers that some of the smartest doctors in the world can't give me. But I need to remind myself that my hope is not in tests or doctors. My hope is in a God that is bigger than all of this crap, and He is holding my little baby in His huge hand. That doesn't mean I'm not angry, or questioning why this had to happen to MY family. But somewhere deep inside me is still that hope, and right now, that's all I have left.
Tuesday, April 28, 2009
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12 comments:
I'm so glad to hear today was a good day! We are thinking of you constantly. Enjoy looking at Ethan's whole face and holding him in your arms again!
Love,
Meredith
Great to hear it's been a good day. It seems like so long ago now that we were visiting and holding Ethan. It is crazy what can happen in a week! We love you all. ~Jesse
i'm so happy to hear this :)
I am so glad today was a good day! I am praying for a better day tomorrow with good news from the EEG. I am also glad you were able to hold him today. That is wonderful.
Joye, your strength in moments of crisis and your joy with Ethan's moments of triumph show what an amazing mother someone can become in such a short time. Ethan is so lucky to have and Jeramie. Can't wait to share more great days with the Tri-Mulli (my new name for your little family!)
Prayers for you, Sam Ed.
Hi Joye. You probably don't know me, but my husband and I go to Viseo Dei. We have met Jeramie a couple of times. We're friends of Kevin and Lori Kelly's. I am so happy to read your most recent entry about Ethan's good day. Tears of joy just started streaming from my face. Your little guys is so precious to my heart, even tho I have never met him. He as well as your whole family has been in my entire family's thoughts and prayers thru this long and difficult road. Your little baby definitely has a fighting spirit and God is absolutely giving his precious little body strength. I know He will continue to do so! I don't understand the reason Ethan is going thru this, but I do firmly believe that God thought you and your family was strong enough to handle this. That is pretty awesome and not many people are that strong. God knows. He is there and he is walking, leading, and guiding every step of the way. If you wonder or forget, just turn over in the bed and look for the indention in the pillow. = )
I'm so happy to hear that today was a good day!
I hope this is the first of MANY good days. I check your blog several times a day looking for an update. Please know that you have MANY people thinking of you and your family during this very rough time. We miss you lots at Combs and you are thought of many times during the day - both at school and after.
I'm so glad that yesterday was good and pray that today is better. Praying each day for Ethan.
The Hills (Mike and Kim)
I am so, so glad that you got to hold him, and that he is off the vent. We are still praying for all of you!
We're so glad Ethan is making progress. Getting back off the vent is a big step. Hopefully you will learn everything else is going to be ok as well and can start thinking about stepdown again soon. We'll keep Ethan in our thoughts and prayers.
David, Carolyn, Jack, Sarah and Wesley.
Joye,
I am so happy to hear that you had a better day. There is just something theraputic about holding your child in your arms. I only hope that things continue to get better without any more set backs. Mason continues to pray each night for his little friend Ethan.
~Marcia Hefner
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