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December 21, 2012

Our day was pretty much the same as our night, no real changes, but no declines either.  We used the word stable to describe Lucy during rounds this morning.  Stable as in she is still febrile, tachacardic, requiring Vapotherm, experiencing pain but not worsening pain, and neurologically about the same - a bit delirious but still responsive.  We are slowly trying to wean her down on the Vapotherm, she is breathing easier and is not as noisy of a breather today as compared to yesterday, this is as a result of the assistance from the Vapotherm.

Lucy is experiencing some withdrawal symptoms as a result of cutting way back on her pain meds.  When things were going badly yesterday afternoon we had no choice but to decrease the amount of narcotics she had going through her.  We switched her patch to the lower dose fentanyl patch and tried really hard to space out her PRN doses of dilaudid from every two hours to as long as we could.  Lucy is jittery and very jumpy today, but is doing better than I thought she would on the lower doses.  We talked about increasing her clonidine dose to help with the withdrawal symptoms, but today we were on sepsis alert and were watching her closely for any drops in her blood pressure.  Clonidine causes hypotension and when you go into septic shock your blood pressures drop, we did not need any confusion if this were to happen today so we held off on increasing her Clonidine.

Lucy was awake for a few hours today and wanted to play despite her barely being able to hold up her head.  She was and continues to be very out of it.  Tonight, however, her heart rates are lower than we have seen in the past 48 hours, her temps are still there but not as high, and her pain is not quite as intense.  I am hoping and praying that the antibiotics are starting to do their job.  Cultures remain negative, as well as her viral panel, but something is causing our girl to be sick and now that her fevers are coming down after 24 hours of being on gentamicin it is looking more likely that this could be urosepsis.  We continue to have to irrigate Lucy's bladder and pull out blood clots to prevent her suprapubic catheter  from clogging, this causes intense bladder spasms which in turn causes her pain and discomfort :(.

My brother has been with us this week which has been so great for all of us.  He cooks, he cleans, he makes great sushi, and even does laundry too.  He and I had lunch together this afternoon outside in the hall so as not to disturb a sleeping Lucy.  I am hard pressed to remember the last time he and I have had lunch was nice even if it was at a desk in the hallway.  The kids came to see us tonight as it was our monthly family meeting night.  I shared with them that it isn't looking like we are going to be home in time for Christmas...this was so hard to tell them.  Instead I told them that we were going to have two Christmas' one at home and one in the hospital.  Jack asked if that meant that there were going to be twice the presents and without hesitation I said yes...parenting guilt, it's huge!!  In all honesty, I think the biggest present of them all will be that we are all together on Christmas day!

Thank you so much for all of your thoughts and prayers, love and support it means so much to us!!
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