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 welcome.

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.  Like many of the organs in Lucy's body, her bladder is affected by her disease and as such is another deteriorating organ system. 

Pain control is proving to be extremely difficult.  We have been increasing her pain meds dramatically over the weekend all in an effort to make Lucy's pain tolerable.  Keeping Lucy breathing and her pain tolerable, it's difficult. 

I am currently watching and listening to our girl struggle to breath, she is retracting so badly.  We just made the switch from her regular oxygen to Vapotherm,  a high flow oxygen delivery device.  She is proving to everyone that she is in need of a lot of breathing assistance at the moment. 

Prayers for Lucy's peace and comfort continue to be needed.   

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 and reasoning behind both points of view, either way we need to find a way to keep our girl comfortable.

I am hoping tomorrow we will gain more clarity on the issues and discuss a plan for moving forward.

I sent an email to a friend earlier today in which I told him that I was relinquishing all control over the calendar - in other words I was going to stop obsessing over whether or not we were going to be home for the holidays.  Then I asked him if I sounded convincing, to which he simply replied "no".  I'm trying, really I'm trying.

Thanks to Lucy's school friends for making her the most creative paper ornaments for her Christmas tree, they are beautiful!  Our CCF family gathered tonight to celebrate the holidays together by making ornaments.  We hung them on a small tree that afterwards was brought to Lucy's room for her to enjoy. It's beginning to look a lot like Christmas:).

Thanks for all of your thoughts and prayers, love and support.

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 very quiet voice just before falling asleep.

When Lucy has been awake she is only comfortable for brief periods of time.  For the most part the above picture is what our girl has been doing for the past three weeks. Sleepy, sleepy Lucy her body fights so hard just to keep on living, she doesn't know how to live any other way. 

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 3708.

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 rounds this morning, there is a concern that Lucy has an infection that could be causing this.  Our main doc and I both suspect that Lucy was septic yesterday, which is why he choose to make an abrupt change to her antibiotic coverage.  It's funny but neither one of us wanted to discuss this thought with each other yesterday.   Her white cell count came down a bit, but is still very high for Lucy.

In an effort to assist Lucy's body with all of the systemic issues she has going on at the moment, we tripled her normal fluid rate.  Needless to say she is looking a little puffy today.  Dr. R is very concerned about Lucy having a systemic inflammatory response to all that she has going on, so he is monitoring her very closely for any changes that could indicate that she is heading in the wrong direction.

Lucy's urine is a cause for concern, she is growing yeast.  This is a significant finding, but we believe that it's secondary to everything else that she has going on.  Despite it being a secondary issue, of primary concern this afternoon was changing Lucy's supra-pubic catheter.  Poor baby, I can think of nothing worse than waking from a deep sleep to somebody pulling something out of a hole in your body…geez, it's no wonder she's so irritable.  Infectious disease has been consulted on this issue as Lucy has been on an IV anti fugal for the better part of the past year.

In conclusion, Lucy is on the fence at the moment.  She could go either way, it's up to Lucy's body to let us know what it's going to do.  Do you think it cares that Christmas is a week away?