Tuesday, June 1, 2010

Maybe Tomorrow?

Julianne might, I repeat, might get her chest tube out tomorrow! That would be super great! We'll see what she drains overnight and how her chest x-ray looks in the morning. :)

She drained another 140ml last night, so the chest tube definitely wasn't getting removed today. It turns out Julianne also has an air pocket in her pleural area, which is the area between the chest wall and the lungs. The treatment for one if these is, guess what, a chest tube. She already has one so....we'll just watch it. She was put back on 1 liter of oxygen today as her doctors thought having the extra oxygen might help get rid of the air pocket. Julianne also has to stay hooked up to suction (which is what powers the chest drain) since she has this air pocket. That means that she can't leave her bed without being hooked up to portable suction, which is as loud as a lawnmower! Ha ha! I just told her its just like when daddy mows! She was ok with that. :)

They're still balancing Julianne's diuretics with her lab numbers. The theme seems to be "delicate balance." She's on some sodium and potassium supplements now. The good news is that her "dry-ish" kidney issue is definitely under control!

The highlight of today was going to the playroom! Julianne was so excited to finally get out of the cart and onto the floor! I asked her, "Do you want to get out?" and she said, "Ya! Ya! Ya!" She was so excited she was bouncing in her seat. We loved it! Once she was out we still had to keep her on a short leash...literally. The chest tube isn't all that long! It was fun. I think we pooped her out. She took an almost 3 1/2 hour nap this afternoon.

Today was another really great day with our baby boo! Everyday is a miracle! We are so thankful that God has provided for us to be here with Julianne everyday. I can't imagine how hard it must be for parents to leave their child here because they have to go back to work. I'm very grateful that we're able to stay with her 24 hours a day. Thank you so much for all of your help in making that happen! As I've said before, we've been blessed with so much more than we could ever deserve!

And now for pictures:

Uhm...we've got some serious bed-head going on. Thank goodness for detangler!

This is the look Julianne gives the doctors and nurses when the come near her! Ha ha!

Playing with her counting cards

This is Julianne's chest tube drain. It has bubbling blue water in it. In the playroom Julianne said, "I wanna touch water." So we told her she could. Then she said, "I wanna swim in it!" It is a pretty blue...but a little too small.

Drumming on a ball

So excited to play!

Playing "stack-em-up"


Anonymous said...

It's so great to see that smile.
She's gonna reach that going home mark really soon. It's great not to rush, tho.

Do you ever read penningtonbaby.com ?
If you do, MC is having her cath today getting ready for the Fontan. If not, check their site out. They are a nice family here in SC.

Luv to you all, Jan

Anonymous said...

I am glad that the doctors are so in tune to what is best for Julianne. I will pray that that air pocket just disappears!!

It is so good to see her play I wish I could be there playing with her!

Actually I kind of like her tosseled bed head look it works for her but she is so cute any thing looks good on her.

Thanking God for all his blessing that have been given to you all!

I love and miss you.

Aunt\Great Suzette

Emma Kate said...

LOVE these pictures!!

Praying that chest tube gets to come OUT soon :)

Anonymous said...

Uncle Jake sure does remember that drainage container. OUCH! Feel for you Julianne. Looks like you are having sooo much fun playing by yourself in the play room. Glad they set you FREE! Ha Ha.

We love you.
Aunt Toni and Uncle Jake

Anonymous said...

I love the "not another Doctor" look! Lol
I can totally understand why she would make that cute little face!!
My fingers are crossed!! Hope today is the day!!!
Love y'all!!

Jason, Denyse, Hannah and Carter said...

Oh how I remember the bed-head. I actually had to cut Hannah's out because no amount of detangler/conditioner would get out the knots!!

Isn't it amazing how strong these little heart-kids are! I know you and Kent are going crazy on the bEast! We'll keep all of you in our prayers especially for less drainage and the air pockets to go away!

It's great to see her smile throughout all of this!!

Anonymous said...

Oh I missed this post! But I can see how much better she looks in your last one on June 3rd! Amazing.
Love Aunt Omi