Wednesday, August 22, 2012

The Grind

Mireya's days are filled with numerous checks and balances.  Every morning we are greeted by our Care Partner to check Reya's weight, temperature and blood pressure as well as saturation of her hemoglobin with the pulse ox.  Next up is the first round of her daily medications (Ursidol, Acylovir, Fluconozole, Tacrolimus, and Mychphenolate).  Then there's the multiple mouth flushes/washes of Nystatin, Saline and Chlorhexidine Gluconate which need to be done about four times during the day.  Radiology comes in every other day bedside for chest x-rays. The Peds Hemoc team comes in on daily rounds to conduct their examination and discuss status/plans.  Mireya's magnesium level has been low.  She's receiving rounds of magnesium to hopefully increase that level. We've fought this battle previously for a quite a while.  The rate at which her body processes and eliminates the tacrolimus affects the stability of her magnesium level. Mireya also started taking GCSF today to help boost her cells. Then we repeat the medication cycle at two more intervals in the day.

Reya has put a dent in a few boxes of Kleenex over the last day.  We believe it may be allergy related and will try Singular to see if we can get those relentless sniffles under control.  There are also the mandated daily showers and linen changes to remove and limit contact with bacteria that naturally resides on the skin.  Labs and blood cultures are done daily to monitor Mireya's counts and to identify bacteria or infection(s). Reya's bathroom visits are also monitored and measured.  We're definitely hoping to avoid C-Diff this time.

Mireya's least favorite tasks through all this medical madness is the showering and swish and swallow Nystatin.  Miss Claire (our beloved ASK grad student/partner) made Mireya a Super Star Reward Chart today to mark the completion of these tasks with none other than Princess stickers.  Every few days she'll get a small reward for doing so.  Guess who didn't gripe so much about her shower or swishing and swallowing today.  Ms. Nadra, the Hospital Teacher started working with Mireya today on several Kindergarten objectives.  They spent about 40 minutes working on Reading, Writing and Language Arts.  Reya also managed to rope her into about 10 minutes of playing with dolls.  The Nurses on the Unit have been wonderful.  On Reya's Transplant day they presented her with a awesome sign they made.  Many of the Nurses that cared for Reya last year are still here.  Those not in our rotation, have taken time to stop by, say 'hello' and give her some Princess love.

Reya has been feeling well, despite the sniffles and sneezies, but she has periods where she's very tired and drained. She woke up missing Jalen and Makinley and was super excited when they visited with her this evening.  Another day down.  Thank you Lord for your grace.

I will look to the hills from which cometh my help, my help cometh from the Lord.  He will not slumber or sleep.  He will watch over my life now and forever.  Psalms 121 (paraphrased)


  1. I love the hugging picture! They are beautiful as always. Can't wait for us all to have a playdate.

  2. Thank you so much for the updates! Let me know if you want any Kindergarten activities to do with Mireya. I have lots of websites that have tons of things that you can do at home. Your family is so cute!

  3. Great pictures! Lotta love between them! Bless her heart....we can't even fathom all she is going through! Anne

  4. Venus, the strength and smiles Mireya shows in these pictures is a true testament of how God is looking out for her. I pray for continued strength for all of you and for the complete and total healing of Mireya. I love the pics. Absolutely beautiful!!! Lizette

  5. Love the pics of the 3 amigos, and the staff there sounds so kind and loving. Carrie