Tuesday, August 6, 2013

Lula Updates: The Week in Review

Last week was a very long, emotional and trying week for Lula and her family.  Thankfully, Lula is now home, where she is able to go outside and breathe fresh air, hang out with her brothers, play with all of her pets and animals and ride her horse, Joe.  Thank you everyone for all of the love and prayers you are continually sending Lula's way.

Below are last week's updates from Lula's mom, in reverse-chronological order (starting with the GOOD NEWS first, of Lula getting to go home from the hospital!):

Saturday, August 3rd
UPDATE: We got to go home! Yea! The 4 o'clock xray showed up the same as the morning xray and that is really good news. We'll see the doc for a follow up on Tuesday. Thank you all for your prayers and loves and support. I'll post pictures of the girl getting to ride her horse again, tomorrow night.

Friday, August 2nd
UPDATE: well, we are still in the hospital. The X-ray this morning showed a bubble still there but we are going to be hopeful. They took her off of suction & we will have another X-ray in the morning. If it's good they will take out her chest tube. If it's not, they may find a way to send her home with a portable suction pump. This child is so very ready to go home. We got to go outside today - we stayed for a long time, enjoying the sun & the breeze. I have some lovely pictures I will post when I get access to better inter webs than the hospital offers. 

Thank you all for the good Jujus. Keep 'em comin'!

Thursday, August 1st
UPDATE: waaaaahhh! Waaaahhhhh! Oh wait, that's not an update - that's me whining. One more day one more day one more day. But there is good news - doc is happy with the progress in the X-ray. One more day on suction then, tomorrow, on to trying water seal & see if she starts collecting air again or not. SHE REALLY WANTS TO GO HOME. But she's art-ing it up today again so that's good.

In other news, I recently learned what "twerking" is.  So, yeah, now my life is complete. (don't google it if you don't know, you'll regret it. Suffice to say it's buttshaking you will never see me doing!)

In otherother news, I'm not sure how to feel when I can tell other docs/nurses have read Lu's updated chart & are now sad faced & "I'm sorry" ing. I'm just not ready to be sorry yet.

In otherotherother news, our room looks like an art/party/bed sheet & blanket factory exploded in it.

Wednesday, July 31st
UPDATE: Lula is feeling better this morning. There is still a bit of air in her lungs so doc is keeping her on suction for another day. She's working on calorie intake today & enjoying time with her uncle Dustin! They will do another scan in the morning... Yea, waiting!

Tuesday, July 30th
UPDATE: Lula's surgery went alright this morning. Hopefully all the leak spots are stopped... Two more days (at the very least) in the hospital. This girl is super done & ready to go home. She's back in her room, resting, while the music therapist softly strums her guitar. Music therapy is the best. Well, equine therapy is *actually* the best but Joe is Waaay too big to get in her room. Loves.

Monday, July 29th
OK. Here's the deal: They are putting her under in the PICU and re-adjusting her bandages around the chest tube to make sure sure that the air in her lungs isn't coming from around the tube. Then, she will be back on suction for a few hours. Then, she'll be on waterseal again. Then, if things are still bubbly, she'll go back under and into the OR tomorrow morning. Apparently this happens sometimeswith lungs that have been highly radiated. The tissue changes consistency and doesn't seal up as well as the a healthy pair of pinkies. She's doing alright. Keeping her head up. But, seriously! UGH!

In other news, I am taking advantage of her dad's time off and I'll be here with the boys. They need the time. I never thought they'd spend virtually an entire week at the neighbor's house. Please pray for/think of/ good juju Chaz - he's kind of a wreck about his twin sister and he's going to have to have a blossom of positivity somewhere in his personality to get through this and do well on the the other side of it. I am more worried about him than anything else right now.

Lula knows exactly what's going on. She knows what all of this "means" and we're doing our darndest to help her talk about her feelers a bit at a time, but let her just forget about it and play "normal," too. It's a weird beam to walk on. She will feel so much better when we get her out of the hospital - but I'm a wee bit discouraged because this much trauma, post lung surgery, doesn't give me a lot of hope for future ops. I dunno.

Stay in the middle. Stay in the middle. Stay in the middle.
(That's code for living in the moment, not the future or the past. One day at a time, one moment at a time, accepting hardship as the pathway to peace.)

And, yes, for all of my recovery friends/family, I am and have remained sober through this adventure. Just to put your minds at ease. I'm probably doing a lot better than I "should" be. 

Thank you all for your LOVE.  The SmithCoes