Friday, September 24, 2010

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.

5 comments:

  1. oh robbie, my heart aches for lolly everyday! i was just telling my husband today... "how much more can she possibly take?!?" i guess you just have to trust that God will not give her more than she can bear. or you for that matter. your strength through all this is so amazing to me. i could only hope to be half as strong if i were in your shoes. i know your strength is a great blessing to lolly and will help get her through all this. i'm so glad your mom is there to help share your burden. a mothers support is invaluable in hard times such as these. i am thinking of ya'll everyday and praying fervently for sweet lolly's recovery. much love, nancy

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  2. wow.


    im so glad the whole family is together, i am almost in tears! if the boys need a place to "roam free" you know who to call. im sure they can only handle so long in the hospital or cooped up in a condo. if there is anytime you and ben just need to be with lolly, they can party at my house. but for now...ENJOY being together! im so happy for you, hoepfuly it will brighten Lolly's spirit a bit to see "the brothers".


    ps. easton needs to have labs drawn in the next week, i will try to "peek" in for just minute when we come.

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  3. What a roller coaster you are on with your little "drama queen"! I sure hope that the air pockets can start to resolve and that she doesn't have a perforation. We have been on that route and it was a horrible scary time. You have a great attitude for recognizing the blessing that all of this has been to diagnosis the real issue before it became an emergent situation! My heart would break to keep hearing the timeline of staying extend on and on! Let's hope that Lolly has exhausted the list of possible complications now and will start to recover on the fast track to home!

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  4. Rob,
    My heart just ached when Siri called me and filled me in yesterday,about what is going on. It is definitely a blessing that they found out before it perforated. I am SOOOOOO sorry that you have to be going through this trial at this time. Lolly looked so dang adorable the other night laying there so peacefully in her wagon. I know this trial is wearing on you but I have to tell you how impressed I am with the way you are handling it all. You are AMAZING! Stay strong, have fun with the boys this weekend. I love you so much and pray for you often.

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  5. I just ache for you guys. I hope you guys will have a wonderful time today as a family. I'm so sorry about all the complications. I can help with Sammi in the coming week. Just call when you need help. Don't hesitate, seriously!

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