Tuesday, July 31, 2012

Not sure...

Somewhere in this mess of wires, pumps, tubes, and blankets is a little girl...it's like a "Where's Wlado" picture.  We are still not sure what is causing Lucy to feel so sick.  It was decided during rounds yesterday that we would ramp up our antibiotic coverage and add IV antifungals to cover all of our basis.  Cultures continue to be negative, with the exception of her urine culture.   Her bladder is colonized with a specific bacteria that has taken up residence inside of Lucy's bladder since the beginning of the year.  Apparently it likes it in there and is coexisting peacefully, in other words it is not causing her to have infections.  We know this because Lucy's urine analysis is pristine, it is showing no evidence of infection.  Our wonderful urology team came upstairs to explain all of this to the new, as in just out of med school and are treating patients for the first time since receiving their diplomas, residents who are assigned to Lucy's team.  Since adding in all of the extras, Lucy's temps have come down, which has us all scratching our heads.  It's quite possible that we are dealing with a very hard to find bacteria or fungus.  Oh Lucy, nothing is ever simple with you, but we love you very much nonetheless.

Blood work is holding stable which we'll take as a positive.  Her albumin is low and has been for days,  I am hoping for an albumin infusion today.  Infusing her with albumin will help with the fluid retention, Lucy is puffy all over especially her hands, feet and face.  When Luc is awake she will engage in conversations but is very out of it looking.  We were able to change her central line dressing site with little fuss last night, so NOT like her.

Lucy's central line is in need of getting replaced, it is compromised in multiple locations making it difficult to infuse through it.  Lucy's central line is her life line, it needs to function.  Before she got sick, the plan was to head to the OR sometime in the next week or so to pull and place a new line all at the same time and if possible in the same location.  Now that she is febrile, we have to wait until she is fever free for 48 hours to even consider doing this.  Just to add to the drama, our surgeon will be on vacation next week.  So, Lucy girl, if you could just break your fevers today that would mean that we could get a new line placed with Dr. K at the end of the week and possibly go home...is that too much for a mama to ask?

Thanks as always for your thoughts and prayers.  It takes a village and we are so blessed to have such a large, thoughtful, loving and caring village.

Monday, July 30, 2012

Supportive Medicine...

Sadly things with Miss Lucy have not changed much.  Her temperature is high, greater than 105.  Cultures are still negative, which means the likelihood that this is bacterial/treatable is dwindling.  We sent separate fungal cultures from her line yesterday afternoon just to cover all of our bases.  If she has a fungal line infection it should show up on a regular blood culture, but not always.  We did a nasal swab to check for respiratory viruses.  That came back negative, but it only screens for common respiratory virus.  Lucy's lab work is indicating that the inflammatory process is setting in, in other words her MAS also know as secondary HLH is flaring.  Our biggest fear has become our reality, it appears that there is nothing we can treat in Lucy at the moment, supportive medicine that is what we are doing.

Lucy's blood counts were dropping so we transfused her last night with pack red cells.  We were concerned about giving her too much blood as her liver is not functioning well and is trapping blood product causing it to swell, causing her more pain.  Our goal was to get her hemoglobin above nine but not tank her all the way up, anything below nine and her heart is not happy.  Heart rates are ever so slightly lower which we'll take as a positive.

Drew and I were talking yesterday afternoon about all of this... what we are seeing in Lucy is like waiting for a hurricane to hit land.  You know it's coming, you don't know where or when, you prepare as much as you possibly can, but in reality who knows if you preparations will ever be enough.  When the storm hits you won't know until it's all over how much damage has ensued.

We have faith...our girl is a fighter.

Sunday, July 29, 2012


Despite being on antibiotics for 24 hours Lucy's temperatures have gone up.  Her heart rates are elevated (160/170bmp), fever and pain are contributing to this even with all of the anti epileptics that she is taking.  These types of meds have a tendency to lower heart rates. I imagine that her heart rates would been even higher if she were not taking these meds.  Her blood counts are falling, and even with being neutropenic her WC count is elevated for Lucy.  She is in pain, complaining that "she hurts", the pain seems to come in waves.  She has this look about her that simply says I don't feel good, I have this look about me that says I am worried.  At this point we are hoping for positive cultures.  Why, because positive cultures would indicate that this is a line infection, and we CAN treat a line infection.  Perhaps one of our biggest fears is that this is viral.  Lucy's immune system does not respond appropriately to illness, if you recall last year the flu virus was nearly fatal to Lucy.  Lucy's macrophage activation syndrome (MAS) is smoldering inside of her, any illness especially viral illnesses can cause her MAS to flare.

We were admitted to our usual home away from home here at the hospital after spending quite sometime down in the ER.  The admitting process is always long, but even longer when your med list is four pages long.  Dr. R emailed me while on vacation,  "as Dr. Doofenschmirtz would say your timing is impeccable Lucy".  I wanted to email him back, I blame you :), every time he leaves town she winds up getting sick.

Drew and the kids came to visit us last night.  They brought us all of the things that we need to survive while at the hotel Dupont, dinner, and a new computer...I love my husband.  When I asked him how much everything cost he responded, "much cheaper than the insane asylum bill!", eluding to the fact that I will loose my mind if I can't connect with the outside world while living in the hospital.

We are hoping and praying for answers today, and that Lucy starts feeling better soon.

Saturday, July 28, 2012

It's been awhile...

Long time no write, I know. I took a conscious break from electronics for a while as life has been crazy busy. I felt the need to cut back on somethings and blogging was temporarely one of them. Then my computer decided that it needed a break as well and it has stopped working all together...ugh. I have so much I want to share with you, but for right now I wanted to let you know Lucy and I are at the DuPont ED. She woke early this morning with acute abdominal pain telling us that "her insides hurt", and now has a fever. Her pain was and is intense and we are hoping and praying for answers. Labs and cultures are drawn, and radiology has taken a look but so far there is nothing too obvious. We are going to be starting our usual protocol for fevers, two separate IV antibiotics one to cover gram positive bacteria and one to cover gram negative bacteria. We are getting admitted, hopefully to our usual floor. On Tuesday while at our appointment with Dr. R he told us that he was going to be on vacation for two weeks starting Saturday. We joking said that will be when Lucy decides to get sick...so not funny Lucy. Thank you in advance for all your thoughts and prayers.