Wednesday, August 18, 2010

Baby steps... steps
Bigger steps, Bigger Steps
Giant Steps! Giant Steps!
-Yo Gabba Gabba

Sorry for the delayed post - I know that y'all are on pins & needles (as we have been!) The wonderful news is that Jay is off ECMO!! That is a huge, giant step and we are so thankful that went as well as it did. Surgically, he did great - minimal bleeding (though he did need to receive some blood) and his blood pressure/rhythms/oxygen levels stayed right where they needed to be without mechanical support. We were able to come back and see him about 2 hours later, and I've never been so happy to see a dirty little boy. (Y'all, he's seriously grungy after the multiple betadine baths he's had.) We were almost able to celebrate this big milestone, but I think from now on we'll always take good news with a bit of "Okay, where's the hitch?" mixed in.

Things were looking beautiful for about an hour or two, but then he spiked a high fever. (See why we're always looking for a hitch?!) Fevers, unfortunately, are very hard on the heart. They can increase your heart rate. That speedy beat challenged his heart more than the docs were comfortable with. The stress on his heart caused his pressure to start dropping. Our absolute favorite doctor, Dr. BJ, was pretty concerned.

He started coming out of the anesthesia, which meant he was more awake ... but uncomfortable. They wanted to give him more morphine, but that unfortunately causes a drop in blood pressure - bad news when it's already lower than they wanted. I was trying not to freak out - at least visibly. Inside, I was shaking. But there were two things Derek and I could do: help to keep him calm (since more morphine was out of the question) and help to bring down the fever with cold washcloths. Both are mom skills, not nurse skills, and I was beyond grateful to be able to do SOMETHING.

So we sang. (Do the song lyrics give away the fact that we love music, in spite of our complete lack of musical talent?) And it really seemed to help keep him calm. Then we froze the poor kiddo with our continued icing down of every exposed body part. And his fever came down. I won't take all the credit for his improvement, but he is vastly improved now from where he was 2 hours ago. Upping the heart support meds helped some too, no doubt. But I am glad I was able to do something.

He is currently resting quietly, courtesy of some stronger happy/sleepy/be still juice. And, for the moment, his pressures are good and his heart rate is strong and his O2 levels are fantastic. He is by NO MEANS out of the woods. The next 24 hours are going to be huge, so please keep praying for us. He took a giant leap today, but there are still many many MANY more steps before we get our baby back in good shape.


Anonymous said...

You are in our prayers. I am glad and concerned at the same time. Did you say pins and needles? We were checking your blog about every 15 min. this evening.

Bob and Dee

Amy said...

Still praying for you guys and the Jay-man. Isn't it great that there are some things that only a mommy can do? I'll bet Jay thinks you are the best vocalist in the world!

Archie Gupton said...

Mother May I...
Yes you may....
Jen, thanks for the updates. We try not to check so often, but have to, as the tension is somehow transferred. You amaze us, with doing what you must, take care of a little brother, and be there to inform and share, plus be the Toolboy's Mom. Way to go Toolboy! Rest...
archie & urbanna

Anonymous said...

thanks so much for the updates- we'll keep praying and thank God for answered prayers.
Chris B

Sush said...

So I'm gulping down tears of joy, relief and amazement for the entire clan. What a loving and brave family you all are. That was wondrous news and thank you thank you thank you for taking the time out for the rest of us.
Hope you all get some rest.

P's mom said...

Great job Jay! Nothing like momma's love to make you feel better! Praying for a restful night that will help strengthen his heart.

Rebecca said...

I got a sneak peak of this from D's facebook status, but I am still so thrilled!!! Praise God for such a big leap! Jay is such a tough little boy and I know your singing is GOOD music to his ears. Y'all are such awesome parents. Praying for a peaceful night for all of you, no more fever and for continued strengthening of his heart.
Rebecca S.

Anonymous said...

Jay is mighty blessed having a mom and dad like you two. I can't imagine better voices to be soothed by than the voices of momma and papa.

I'm so thankful that you were able to bring his fever down, and I'll pray that the next 24 hours are calm and smooth for all of you.

Lynn, Scott and family

Anonymous said...

I admire your strength and faith. I have been praying for little Jay and his family and spreading his story to everyone I know that will be praying for him as well.

Anonymous said...

Holding all of you in my prayers!!! Praying for peace and courage for you and for the doctors' wisdom. Blessings to all, Margaret Lynn

Karen Pruette said...

Derek and Jen,
I've been praying so hard for Jay, the two of you, the medical team, and everyone involved. This is indeed good news, although I know that every "hitch" is excruciating for mom and dad. I'll just keep praying that Jay's little heart grows stronger and stronger, and that there are no more emergencies. Love to all of you.
Karen Pruette

Anonymous said...

So grateful for your report. Thanks for making time in all of this to keep us posted. Jay is obviously a fighter and one special little boy. We prayed for all of you at the end of choir rehearsal tonight and will continue to pray, especially that these next 24 hours go as well as they can.

Mary Alice

Anonymous said...

I have been checking the blog religiously all day so THANK YOU for updating so often. Those of us not there in person are with you in spirit and grateful for being kept in the loop when we know how busy you are loving on and calming down that little fighter! You guys constantly amaze me with your strength, patience, and courage. I hope Jeff and I will be half the parents you and Derek are. We are still sending love, and will continue to think happy thoughts.
JB and JB

Anonymous said...

I heard from one of our friends tonight and was telling him about Jay. He wanted to pray for Jay also, and said he would share it with his small group fellowship tomorrow night.
We are continually praying for Jay and y'all.

Aunt Ali

ANAPatterson said...

Been thinking about you guys and been trying to check your blog as well as facebook for updates. So glad his fever came down. I hope he rests well tonight and you keep making steps forward.
Prayers, thoughts, Love and Hugs

Anonymous said...

So glad to hear the good news, even with the blips. Jay is such a fighter, as brave as his parents are. We'll keep praying here for continued improvement over the next 24 hours and beyond. God bless.

Nancy Kiltie

Anonymous said...

Jen and Derek
We are constantly praying and thinking of you guys. Jay is a wonderful little fighter. He is a very lucky little boy to have wonderful parents like you two. Keep singing. We love you guys.
Ginger and Tyson

Anonymous said...

Our Sunday School class prayed for your family this morning. We look forward to more "good" news!

Barbara Huggins