Friday, April 27, 2012

Day #8 post-op

11:21 p.m.
The PICU doctor came in and talked to us about the ultrasound results.  The results are not as bad as the xray indicated.  Her right side has more fluid than the left, but it is still not very significant.  No chest tube for now - phew!  The plan is to start CPT to get that fluid moving and have a repeat xray in the morning.  If that looks better then midday tomorrow they will "test" her to see how she does breathing while hooked up to the "bag" instead of the vent (wish I knew the term for that, but I don't).  Here's praying for her to have a restful night with good sedation and to tolerate the CPT well without getting too aroused.  Also, that the CPT makes a difference and gets that fluid out!

Believe it or not, right now with the vent/breathing issues, its more like she's *just* recovering from a surgery, not a liver transplant.  I think once she gets off the vent the reality of the transplant will hit.  Also, we're not too focused on the liver right now because all her labs keep coming back awesome.  Its normal for rejection to happen at some point, but we are SO not thinking about that right now.

9:45 p.m.
Still waiting for the PICU doctors to round this evening and give us the scoop on her lungs.  I found some comfort in going back and reading my friend, Moreena's, blog from Annika's time in the PICU.  Thank you for recording that, my friend, in your eloquent writing style.  It did bring comfort, although Shelby is faring much better than Anni seemed to on one of her *good* days, to know how Annika is now and what she overcame in her PICU days.   

Below are pics of a "rash" that Shelby has developed in the past few days.  She also has it below her nose and upper lip.  Dr. Whitington said he'd "bet a buck" its a drug reaction, but dermatology was consulted and said it was like an internal trauma to the skin, possibly from her being so swollen.   Who knows.  They're keeping an eye on it.  Oh Shelby!  You and your mystery skin "stuff."

Crazy mess of IV stuff, anyone?!  I'm glad I don't have to figure all that out.

8:03 p.m.
The ultrasound just happened a few minutes ago.  Amazing that while inpatient, in the PICU none-the-less, it took 5 hours for it to happen.   If the doctor doesn't come tell us in a bit those results, our nurse said she'll call him/her (I don't know who is on tonight).  Sigh.  Big bummer today.  She's very quiet, very sedated and getting some much-needed rest.  My parents came back in today and for that we are very thankful.  I ended up napping in the room while waiting for the ultrasound.  Now, we're going to try to figure out what to eat.  Prayers, please, that the fluid in the pleural space goes away on its own.  I'll update when I know more.

2:50 p.m.
No extubation today.  Apparently there is more fluid in her lungs than was indicated during rounds.  They tried to take her off the vent and had her breathing through the bag (? I don't know what its called) and she was maintaining her sats, but she was working way too hard to breathe.  She's on the vent now, but still doing the breathing on her own like earlier.  She was given more precedex (higher dose now) because she's been way too lucid again.  She was also given a prn dose of versed.  An ultrasound of her lungs/diaphragm has been ordered.  If there's too much fluid she will have to have a chest tube placed.  It will most likely be a few more days before they look at extubating again.  We are very disappointed for our little girl, but do NOT want her to be extubated too soon and have to be reintubated.  I'll update when I know more.

11:42 a.m.
The doctors needed to extubate her are working with a really sick baby that came into the room next to us so we continue to wait.  Shelby is in and out of it, but pretty calm.  Impatient, but we wait.  I pray they can get that little one stabilized.  I don't think things are very good over there :-(

9:57 a.m.
The team has rounded and all looks like a "Go" for extubation, but we have to wait for the PICU doctors to be done with rounds (and the PICU is FULL today) so they can come evaluate her and hopefully pull out that breathing tube!!!  She's been breathing on her own for 4.5 hours now and took a deep breath for the doctor when he asked her to.  Waiting impatiently, but luckily Shelby is resting peacefully. 

7:15 a.m.
The night went well.  She was more "awake," but settled down pretty easily.  She is getting uncomfortable laying there and tries to find a *better* position, but that's so incredibly hard to do when you're drugged up, have in a urine catheter, a huge scar (by the way, she has a mercedes incision), both your arms in immobilizers, a PICC line, an arterial line (right in the wrist, of course, so you have an immobilizer on that hand) and 2 jp drains...oh and a breathing tube and an ng tube....but my girl gives it her best shot.  Since about 5:30 she's been doing all the breathing on her own.  Its a "pressure trial," I think.  That means the basic settings of the vent are on to accommodate for the tube in her throat "obstructing" her airway, but otherwise she is doing all the breathing on her own.  So far, so good :-)  Please pray for extubation later this morning...I'll post as soon as I can, but I'm pretty sure I'll be loving up my sweet girl so don't worry if I don't post for a while.


Anonymous said...

Can't wait for that next post...patiently waiting for this afternoon/evening update. Great job Shelby, we ae so proud of you.
Maggie, LF

Anonymous said...

So happy the process is going well! She'll be her sweet sassy Shelby in no time! Thanks for letting me visit, it was great to see you all.
Nicole Schandelmeier

Anonymous said...

Jenn, what is a 'mercedes incision'? I looked at the picture, it kind of looks like an upside-down T. Is that what it is called when the incision looks like that? That is the same one my Jess has, and it healed beautifully. However she does have numbness in her belly area, they say the nerves that were cut did not completely heal. She doesn't seem to mind it though, and she can now do a complete backwards bend (I think it is called a bridge) in gymnastics. Her doctor's could not believe she was able to do that much of a stretch with that scar! -Linda from LF

Jenn said...

That's what it is, but Shelby's is more like an upside-down "T" because they used her shunt incision, too, so that part is more straight across.

moreena said...

Extubate! Extubate! Extubate!
Crossing my fingers and toes that she can be vent-free today!

Anonymous said...

What a surreal existence it must be for you all. So glad things are going so well (albeit slow) with Shelby. Prayers haven't stopped for any of you. Hang in there!

moreena said...

Oh, man. What a disappointment. And I know it's so hard to work on getting sedation light enough to give her a chance to come off the vent, only to have it go away again. I know you're trying your best to be optimistic, and you know that reintubation is tricky and no fun at all. I'm glad you've got yourself grounded that way. But, man, that is hard. Chest tubes, btw, are like magic. Much like precedex.

Thinking of you guys. Stay strong. Get some rest. These days drag by, but then they are over and it is so worth it.

Jenn said...

I was hoping you'd post a comment. I needed your cheerleading b/c I know Anni's "been there, done that." Thank you (((HUGS)))

Anonymous said...

Yuk Jess also had a chest tube. It wasn't the end of the world, but it kinda sucked. This must be SO hard.
-Linda at LF

Stacy said...

I think we may have seen the family of the baby they were working on yesterday. As we were walking from the surgical waiting room to go downstairs, I saw a family who was hysterical with an empty car seat. Poor little one. I'm sorry Shelby didn't get extubated yesterday. I hope it happens soon for her. Better to be safe than have to re-intubate (at least that's what they kept telling me when I kept getting impatient.) :::::hugs::::: I'm sorry we couldn't visit yesterday. What with having an over tired, hungry, Abby and dealing with Ben, it was very busy.