Long day...

This has been a really, really crazy day.  So much has been going on.  I've had lots of people tell me that they wait and wait for an update, and get anxious when I don't post anything.  For any of you that have been waiting today, I'm sorry it's taken so long, but thanks for checking!  Life here is really crazy- most days I don't get a chance to eat lunch until about 3 p.m. and dinner about 10 p.m., and it's terrible, but I haven't had time to go "pump" for Sammi.  After not being able to get ahold of me for several days, my sister was finally able to catch me on the phone.  She said she just pictured life in the hospital to be a day spent lounging in a chair, surfing the internet, watching Lolly sleep.  It is anything but!  If I have 2 minutes to chech my email, I feel grateful.  There are many of you who I'd love to respond to personally, and will, but things have been nuts.

So...about today- this new development, Pneumatosis coli is perhaps Lolly's most serious complication.  It is potentially fatal, but that is, of course, worst case scenario.  I am in awe at all the terrible things that E. coli has done to her tiny little body.  Two weeks ago, when Lolly got sick, I had NO idea she could possibly be so sick, or that she could have so many complications.  

The Pneumatosis coli are air pockets in the muscle wall- very likely the cause of all her horrible, horrible pain and belly distention.  It is very serious.  Today, the surgery team has been checking on her.  The will not operate unless her bowel is perforated.  The docs have said that we will know if her bowel is perforating because her vital signs will go nuts and she'll be in a great deal of discomfort.  We're really hoping we can avoid surgery, but the surgeons told me there's really no way of knowing whether or not she'll need it.

Because of the Pneumatosis coli, Lolly can no longer receive nutrition through a feeding tube.  She had to have TPN nutrition through an IV.  Because she needs really dense nutrition (to give her calories to get better) without a lot of volume (because she's in acute kidney failure), they had to put a PICC line in (a semi-permanent IV that is fed through her arm toward her heart).  It was kind of a big deal, but she had a large group of people at her bedside, with two Nurse Practitioners here to give her mild sedation.  Her blood vessels are so tiny and they tried, without success, in her first arm at first, and finally got it in her right arm.

She's now receiving her TPN nutrition.  This might have to go on for a really long time.  She is NPO (nothing by mouth).  Remember...she's two- she will NOT like this.  I'm scared...  Last week, we'd have to say things like, "Sure, Lolly, you can have a little drink, in about an hour."  Now, we'll be saying things like, "Sure, Lolly, you can have a drink, in a few weeks."

As soon as she got out of sedation, Lolly got to start dialysis- a 3-hour treatment tody.  Before dialysis, she peed THREE times today.  That is AWESOME!  It seems like anytime we do anything to really tick her off, she pees.  

After dialysis, Lolly is due to have a blood transfusion (boo!), another KUB x-ray (every 6 hours to monitor her Pneumatosis coli, and at some point, she has to have an Anderson tube put down her nose- like her feeding tube was.  An Anderson tube has a much larger diameter than her feeding tube, and is put down, to her stomach, to suck out anything remaining there. 

It's been a really long day for her.  At times, I find myself asking, "How much more can she possibly take???"  But she deals with the latest thing, is ticked off for a while, then asks for a wagon ride to make it all better.  She LOVES her wagon rides now!  Loves them.  She never wants to get out of her wagon- even in her hospital room- she'd rather be in there than in her room.  Trey was the same way, after his last heart surgery.  He felt like his wagon was the one safe place he could go, and he wanted to sleep in it. 

It has been a really hard, tiring, emotional day (and that's just from my viewpoint- for Lolly, it's been about 10 times worse).  Our nephrologist, Dr. G, told me to prepare for about a month here.  That was really hard news to take.  And I honestly can't think further than one day ahead, for fear that I'll burst into tears. 

The best news of the day?  Ben and the boys are almost here!  I haven't seen them in nearly TWO WEEKS!  It has nearly killed me.  I CANNOT WAIT! 

Trey's birthday is this Sunday, so I hope to do some fun things with the kids.  I am more excited to be with them than words can possibly say. 

UPDATE: They are here!  I've never had such conflicting emotions- I am sooooo happy and sooooo sad, all at once.