Pain and Agitation

It's been an extremely hard day for Our Girl. Lucy's been in pain with heavy, hot tears flowing from those blue-green eyes. It just breaks your heart.


Since Lucy can't tell us what's going on, we can only guess what she is feeling. We think she is extremely over-stimulated, and who wouldn't be during a hospital stay?  Because of all that is going on in her little body, we have doctors, nurses, techs, specialists, housekeeping, etc. in and out of the room literally all day long.  These things need to happen and obviously these folks need to be in the room; it's just that every time that door opens, the toilet flushes, or even when someone sneezes or coughs, Lucy becomes extremely agitated and begins to scream.


We've tried different types of pain meds and agitation medications, and NONE of it seems to be working.  Lucy will sometimes settle down for about 10-20 minutes, get startled and start screaming hysterically. These episodes have come on and off since early last week, but as of today, they are almost completely non-stop.  It's incredibly tiring for Lucy Belle, as you can imagine, and it's exhausting for us as her caregivers as well.  When tears are flowing from your baby's face, when they are screaming and you have no doubt that they are hurting; when you are doing everything possible to stop that pain, and yet nothing anyone does stops it all . . . your heart breaks over and over again.  It is tiring physically, emotionally, spiritually, and mentally.  I can only imagine how worn Lucy must be!


A few tests were done today, one extensive, and I'm so grateful that Jayme McLaughlin (Mike's mom) was there to help.  We were transported over to Presbyterian hospital for some vascular tests, and our Poor Girl hated every moment of it.  I personally believe that each time Lucy is held down, she thinks she is going to be poked for a blood-draw.  Imagine two hours of that, with Lucy screaming uncontrollably (and that was after all of the pain meds)!  Jayme and I got our work-outs in by trying every possible consulation and comfort, in every kind of position.  The one good thing - Lucy really enjoyed her ride back to her room in the wheelchair.


Lucy's seizures have continued today, and although they aren't as long in duration, they are still coming in clusters and look different than her typical ones.  She's started doing different things, making us think that her head is hurting.  She's bobbing her head and violently pulling her hair out.  It's so hard to watch, and you can just imagine what she's feeling, being desperate enough to pull out her own hair by the hand-fulls.


These symptoms lead us closer to an additional diagnosis, but we won't know for sure until after tomorrow.  In the morning, Lucy Belle will have a small but intensive test called a lumbar puncture. We will head to the PICU to have Lucy sedated so that they can get a good sample of her spinal fluid.  Doctors perform these tests all the time (Ellie Kate had this done several times as an infant), but we  are all just a little nervous since Lucy has to be sedated.  That's a risky thing on a good day.  Please pray for things to go smoothly and for Lucy to be able to go under and wake up easily and quickly, without complications.


Still so many unanswered questions, but Mike and I are okay with that, as we know it is all a process - eliminating things, watching bacteria grow, etc.  We do still know that Lucy has ecoli in her blood system and in her port.  We hope to find out where the infection is coming from and find out whether or not we need to add the other diagnosis.


Your texts, gifts and messages have so encouraged our heavy, tired hearts.  Thank you for your reckless love, Sweet Friends.  We couldn't do this without you!