Is this for real???????

It's 12.28 p.m.- Friday morning.  I'm still up, in Lolly's room.  The excitement has returned (not in a good way!), and I can't sleep.

A surgeon just came in to evaluated Lolly to see if she might need emergency surgery.  The word of the day today is Pneumatosis Coli.  Apparently, Lolly has pockets of air in her bowel- air where it should not be.  At first, it sounded quite harmless, but the fact that the docs called someone from surgery to come right away tells me that it's not.  And the fact that the doctor told me that if it were his child, he wouldn't leave the hospital tonight.  Mom was going to take another night shift here, and I was going to head home with Sammi; now we're all staying.  It's already been a wild night- and the night is still young!

My mind is somewhat reeling right now at this latest complication, but at the same time, I am sitting in amazement at the tender mercies of the Lord.  Writing out my thoughts has really helped me to put everything in perspective. 

So...follow me here...Normally, I would not think that the diagnosis of Pancreatitis would be a blessing for any child.  My mom had one of her Facebook friends tell her that Pancreatitis is worse than labor.  But, because of the Pancreatitis, Lolly needed an NJ tube to rest her stomach.  This afternoon, they started giving her NJ tube feeds.  The feeding pump machine giving her feeds kept alarming, and our nurse suspected there might be a kink in Lolly's NJ tube.  She tried to reposition her to see if the formula would go in, and it worked for a little while before it alarmed again.  Our nurse told me that if it didn't work, we'd have to go to radiology for a KUB (an x-ray of her Kidneys, Ureters and Bladder). 

The feeding pump worked for a little bit, and I was SO GRATEFUL because Lolly was sleeping so peacefully- I did NOT want to wake her.  Finally, trying to make Lolly's tube work for a little while, our nurse decided we'd better just head down to get the KUB.  We went down, got the x-ray, and saw a very definite kink in Lolly's NJ tube.  I figured they'd simply put a new one in tomorrow, and we'd be good to go.

So radiology called up after we got back to the room- she did have a kink, but they were also able to see that she had Pneumatosis Coli.  Long story short- Pneumatosis Coli is usually benign (meaning that the problem can resolve itself), or it can be very dangerous.  The gas can build up so quickly that it causes the bowel to perforate, spreading bacteria throughout the abdomen.  That. Would. Be. Bad.

So...one way to look at this is that it's a blessing that Lolly got pancreatitis, which causes her to need an NJ tube, which happened to get kinked, which required an X-ray, which led to the diagnosis of pneumatosis coli, which was a huge blessing because they are now on top of it.

Another way of looking at it is that it is a total rip-off for a little girl who has already been through too much because now, instead of being fed formula through her NJ tube, she'll require TPN nutrition through an IV for quite a while, as well as IV antibiotics. 

Probably both ways you look at it are true.  Another crazy development in Lolly's life.  I wish her life was boring.

The surgeon and the doctor will both be checking on Lolly frequently throughout the night.  That's never a good thing.  It's a really good thing if everyone wants to leave you alone.

But there were a few really good things that happened today:

Pain Management Service came to visit.  They are my new favorite group of people here.  Instead of "chasing" Lolly's pain like we've been doing (but never quite catching it), Pain Services are staying on top of her pain.  They came this afternoon, started her on some meds, and IT HAS BEEN AMAZING.  When she's been awake, she has been calm and quiet.  Quiet meaning no moaning or groaning or sounds of misery.  I haven't heard quiet from Lolly when she's awake in over two weeks.  Also, when she's awake, she actually seems to feel good for the first time.  This evening, she took a nap in her wagon.  When she woke up, she didn't look ticked off, and when I asked her if she wanted to play with a toy, she said yes.  It was AMAZING.  Really.  Amazing.  The child who wanted nothing to do with toys wanted a toy.  And she played with toys.  Lots of them.  Really.  It was so wonderful.  She had her baby doll with a tiara on and necklaces on and a ball in each hand- it was awesome.  And she was very, very content. 

I thought we were going to end the day on a very good note, but it's actually turned out to be quite crazy.  I'm really tired, and I hope to get a little sleep before her next KUB at 4 a.m. (they are going to see if the Pneumatosis Coli is getting worse, or hopefully better).

I have no idea if this post made any sense at all.  It is after 1:00 a.m., afterall.  This has been crazy.  Today, I told one of the docs (Meri- my favorite!) that it seems like there is a rare possible complication with this HUS, Lolly seems to find it.  She's tracked down just about every possible complication she could have so far- seizures caused by encephalopathy, dialysis caused by acute kidney failure, intubation caused by fluid overload, pancreatitis caused by who knows what, blood transfusions needed because of terrible lab numbers, Pneumatosis coli caused by unwanted bacteria in her gut, etc...  E coli is horrible.  I had nooooo idea what poor Lolly was getting into when she was diagnoses with HUS (Hemolytic Uremic Syndrome).  This is crazy.