Day +29 October 21

"Jammin with Jan" music on Tuesday

Grandpa, Tuba, Chloe, and Sully

We are still waiting and watching.  It is the hardest thing in the world.  We are straining our brains to think of interventions, but mainly it's waiting for the meds to work.  I asked if the Abelcet dose could be increased a fair amount due to unknown affects of Prisma.  It is hard to tell how much of a medicine is pulled of with dialysis in spite of studies and theory.  Sedation and Vecuronium are not supposed to be affected by dialysis in theory, but we can see easily that she needs much higher doses when on the circuit.  Also, we are not sure how her increased metabolic state affects medications.  So the docs agreed and increased her Abelcet and Voriconazole.  The down side is that these meds and increased dosages can harm her kidneys and even liver but in our care team conference, we got "the talk" (about how serious her condition is)so if it is between kidneys and life, we choose life. 

I am going to be a little medical for a bit in hopes that someone has insight on eradication of this fungus. Hopefully this yeast has not gone to far to manage.  It is called Candida Parapsilosis in blood, skin, and airway.  She is being given Abelcet at 10mg/kg/hr (amphoB), Voriconazole 60mg q12hrs, She also had a 2 time order for AmphoB nebulizer.  We thought of decreasing or holding TPN to decrease sugars in her system that may feed the yeast (docs thought this a bad idea in that she may crash without the carbs in her hyper metabolic state).  I also thought of decreasing or holding antibiotics since she was not having signs of current bacterial infections, but that too was not a helpful idea. We stopped Medihoney for the same sugar thought process (although infectious disease thought it wouldn't hurt) and instead are using Ketoconazole on her skin and trying to keep areas open to air as much as possible. Her Hickman, bilat fem PICCs, and new art line all come back positive on recent cultures and cannot be replaced at this point d/t few or no alternative replacement sites, need for access, and possible futility of it at this time.They are managing blood pressures and temps, and checking cultures every other day.  Any other thoughts, ideas, insights??? Ask, research, think for Elle please.  We are hoping in a couple of days she will start to turn around.  She is still fighting for life and we want to help her!

Stefan and I are taking turns at her side.  We did go to a Picnic with the Edlings and Ringgolds though (Daylon and Bella's families) at Hidden Falls in St. Paul for a couple of hours while dad watched the baby.  Jennifer provided most of the meal which was delicious.  We all had a good time, a nice break from the heaviness of the day.  The kids are so fun to watch and all in the same age group.  Later we played Bingo for a little bit then back to the hospital. 

Chloe wanted to see her sister and drew her a picture. Elle still responds to our voices and touch and looks at us.  Getting hard to keep her comfortable right now though since the Dilaudid and Versed drop her blood pressures, but we are still getting her there. 

Stefan does such a good job with head gear; here with RT

A rare look at her uncovered, unbandaged head

We took a couple of hours with the Edlings and the Ringgolds at Hidden Falls Thursday

See the little pumpkins and witch hats -Becca, one of the RTs drew them -I call her an" RTeest" -ha ha

Chloe drew this picture and is showing it to her sister.  In her words: Its Baby Elle with a breathing tube, a breathing machine, and medicines to make her better so she won't be sick any more. can you see all of the crazy lines? That is what all of her tubes look like to Chloe, but she does take it in stride.  She is pretty tough physically and emotionally.  Both of our girls are.