PICU - day 8 Happy Valentine's Day!

Happy Valentines Day!

Thank you to each of you who sent Valentine well wishes to Emylie. I am happy to report her box is full of so much love it is bursting at the seems. I know there is still more on the way too. Thank you for caring about our little girl. Thank you for the prayers.

Today has been a nice day for Emylie. Her temperature is down. Her oxygen requirement is down to 37-40%. Her PEEP setting was dropped from 15 to 14 this morning and then 14 to 13. And so far so good. Her chest xray this morning came with notes that said the atelactasis (lung collapse) was a little worse. Her blood gases have been in good places. Her potassium and chloride levels are low, so they are adding the chloride to her feeding and potassium through her PIC line. She is still sedated and paralyzed (i.e. medically induced coma). She is on antibiotics for the pneumonia. She has a small wound a little bit larger than the size of a pencil eraser from her IV. They took the IV out of her hand this morning and now Wound Care is following the sore. :( Her little lips are cracked and bleeding despite the attempts to keep them moist. Wound Care will be called in the morning to come take a look at her lips. This morning with her trach cares the respiratory therapist noticed a little granulation tissue on the top side of her trach stoma!!! Seriously! She is also bleeding a little around her trach stoma. They say that it can be from the larger trach or from the irritation the cuffed trach may be causing. I know it is necessary but I am still disappointed because her trach stoma has always looked so good. Hopefully it wont cause her trouble later. I feel blessed that she is a live, so we will take care of that as it comes. Can't change that it happened...but we can do our best to get her better.

The nurse just told me that her blood gas looks awesome. The nurse practitioner agrees and wants to leave things as they are for the night, get a chest xray in the morning and see what that brings. Oh and her potassium should be 3-3.5 and last reading was 3.2.

After 7pm shift change the night nurse asked if I would help give Emylie a bath. I was in charge of washing her hair. I was completely happy to help yet it hurt my heart and was a little frightening. I am afraid of moving her around to much in fear that her trach might come out. Even though it has a cuff and the ties are on I think I have post traumatic stress from the time her trach went in the wrong place and she went into respiratory and cardiac arrest. So as I am washing her hair my anxiety increased for fear that the trach would come out when she was already in this extremely fragile state and thinking of what that would potentially mean for her. There is my little side note. The nurse was very kind and acknowledged my fear, got a couple extra helping hands for when we changed her bedding and all was well. She looks beautiful and is sleeping peacefully of coarse.

We had a couple visitors today, Kimberly Farley (one of Emylie's wish granters) who brought some valentines for each of the girls and an egg carton to sleep on... and my sweet cousin Curt and his family brought some yummy brownies and darling Valentines. Also, Emylie received a cheery monkey and bright balloon from her therapists and school teachers - thanks to all of you!

I cannot even begin to express how much everything everyone of you have done means to us. Your kind acts and words give us strength. I know our prayers are being heard and answered. I feel like today we made progress. I pray she will continue to take little steps forward each day.

As I understand things today...it is likely she will be here for a couple more weeks at least. For example...the PEEP setting is at 13 and I have been told that they can only go down one number every 12 hours and we need to get Emylie down to 6. That is just one of the factors. Her complete care is a balancing act of so many details. I am in awe over it all and sometimes overwhelmed with it all. For now I am going to enjoy the nice day we had...