Deciphering pain...

"My bladder hurts!", Lucy has been consistanly telling us this for almost two weeks.  For her to localize where the pain is coming from is quite amazing, really!  She is has not wavered in telling us where she hurts, except for the two times we went and stuck something in her bottom - then she told us, "My bottom hurts!", smart girl. What we are trying to figure out is the type of bladder...

Clarity…

Warning…this is a long post, with lots of information.  It may cause some confusion, but hopefully it gives more clarification. Clarity has always been our prayer when it comes to deciphering Lucy's issues.  It sounds like a simple prayer, but oh Lord we recognize that it's anything but simple. A little background medical history on our girl, humor me for those who have been following...

Back to the OR...

I am working on a post in which I detail more of the issues surrounding our current issues.  I promise to post it soon, I just need more than a few minutes here and a few minutes there to get my thoughts out clearly.  Soothing a very cranky and uncomfortable girly has been a full time job as of late.  I am a mom, comfort is what I do best. In the meantime I wanted to quickly share...

'Twas the night before Christmas...

Many thanks to all of Santa's elves for making ALL of this possibl...

Silent Night...

Ah, not really! We are making the best of a not so ideal situation, we're spending Christmas together in the hospital.   There's a slumber party going on in Lucy's room tonight!  Tomorrow morning I will receive the best Christmas present ever, waking up with all four of my kiddos and my husband on Christmas morning in room 3708 "our home away from home". Merry Christmas to...

Back in our room...

Just wanted to let you know that we settled back in our room.  Lucy's procedure proved to be informative.  Again I will include more detail in a later post.  Thank you for your thoughts and prayers, love and suppo...

In the OR

I apologize for the lack of detailed updates.  When I have more time I will detail with you some of the events that have lead us to where we are currently with Lucy's most recent issues.  Lucy is currently in the OR having her bladder scoped in an effort for us to try and figure out why she is in so much pain.  Prayers for comfort and clarity are once again welco...

Painful...

Lucy, Lucy, Lucy…oh Lucy! My mama heart aches for you and what you have had to endure and what you are having to endure at the moment.   It's painful for me to witness you in pain!  I will write in more detail about Lucy's most recent issues in a later post.  For now I will simply say that Lucy's bladder pain is beyond what any of us who know and love our girl ever thought possible....

From where I sit...

 Lucy could use some prayers for peace and comfort,  as well as some prayers for clarity on her issues.  Thank you for your love and support, thoughts and prayers...

Tomorrow's another day...

It's late and I am just heading to bed, but I wanted to just give a quick summary of our day…. It was much the same as the day before, not much change.  Lucy's bladder is really bothering her.  We are waiting on culture results to find out specifics on the yeast.  Some of our docs are inclined to treat it right away while others are waiting for more information.  I see the logic...

Mama, I don't feel good...

Our secondary bladder issue, has become a more of a major issue.  Bladder pain was a huge problem for our girl today.  We attempted instilling her picky picky bladder with Lidocaine all in an effort to help Lucy cope with the discomfort.  She continues to require around the clock pain medicine despite her lipase trending down.  "Mama I don't feel good" she said to me in her...

Send us some holiday cheer...

Back by popular demand, e-cards.  Help us overload the system here at the hospital, and send Lucy some holiday cheer (our friends in patient relations gave us permission to do so :). Just click this link and follow the directions on the hospital web site. Lucy's room number is 370...

On the fence...

Not much change in our girl clinically today.  Her lipase did come down quite bit from the +15,000 it was yesterday, but it's still in the thousands which is very high.  Our pain management plan seems to be working; however, Lucy was much more irritable today.  Tonight was rough as well, Drew and the kids came to see us but Lucy was grumpy and very tired. After some discussion during...

Our home away from home...

We have been admitted to "our home away from home" yet again, and so close to the holidays. What is it with Lucy and being in the hospital for the holidays? In case you've lost count, there are only 8 days remaining before Christmas, 8 days! Here's hoping for a miraculous recovery for Lucy, and also that UPS pulls through for us. Lucy has a pretty severe case of pancreatits as well as an infection...

ED...

Lucy woke in the middle of the night with increased abdominal pain that was way above and beyond her normal belly pain.  She's shaking, retching, vomiting…and just plain miserable. Not sure what's going on but everyone is working hard at trying to figure things out. Packing Lucy up quickly…it should be an Olympic event.  I think I have what we need to keep her on med schedule until orders...

Secured...

We are home, safe and sound.  By the time we left the hospital this evening the snow had stopped and the roads were better.  The big kids are nestled all snug in their beds, while Lucy and I are snuggled together in my bed - infusing meds, what else is new. Today's procedure was not quite as simple as we were hoping it would be, but then again is it ever really simple!?! Our surgeon and...

Rinse, Lather, Repeat…Ugh!

It's snowing, and as such our kids have their first official snow day of the school year.  They had a two hour delay yesterday, but that doesn't count according to Jack. Snow is not wheelchair accessible…just saying. When I heard the weather report last night I didn't want to believe it.  They predicted Sunday's storm incorrectly…less than an inch turned out to be almost a foot of the...

Update...

Thank you for your prayers, they were able to get a tube back in…whew!!!  Our urologist was also able to take advantage of Lucy being under general anesthesia and did some work on her bladder, Luc has been having some issues with sediment and blood clots clogging her catheter.  We also took the opportunity to change her GJ tube while she was under, we considered it an early Christmas present....

Say a little pray please...

This time last week we were here… Today we are sitting in the waiting room, waiting for our little one to come out of surgery…again.  Lucy's gallbladder tube came out sometime during the course of last night, not sure exactly when.  By the time I realized this her stoma, or the hole that the tube comes out of, was closed shut.  I could not insert anything into the hole to try...