Ready, GO!

"I'm done, I'm done!' Liz cried over and over again this afternoon as we worked to get the tape off her face so that her NG tube could be pulled. She is amazing and though she may verbalize how she doesn't want to do something, she always is so brave and goes along with whatever we ask of her or put her through. It took hours to convince her that she had no choice but to have the tube removed, and though she was terrified, it got done. In fact, she pulled it out of her tummy, throat and nose herself!!!
17 days into this admit, and ten years into medical issues, she finally reached her limit of tolerating it all, and cried as she refused to let anyone touch her for hours after.
My momma heart.

I agree with her. I feel done, too. I also look done; three people who know me well said I am looking pretty bad at this point. A sweet friend (who did not offend me at all, and can speak openly with me, as she is a hospital mom too) said
 "oh wow! What happened to you between Monday and today?!"
I guess I have proven that day 15-17 of a hospital stay is when I am officially over it.

I have had hardly any sleep in the past three weeks and literally not more than three hours in the last two days (Liz's IV beeped EVERY 5 minutes the last two nights). Still, I had to pull myself together for today because we had a full day of education and meeting with doctors. I don't drink coffee, but today I wished I did!

Walter was here all day to receive the PICC line and TPN training with me. I have been around this medical stuff for a decade and feel comfortable with much of it, but I will openly admit how overwhelming it is to take in all of the education and know that I will be giving Liz the TPN and dealing with her PICC all on my own (a home health nurse will come only once a week to draw labs and do a dressing change). I know that after I do the whole process, I will become much more comfortable with it all, but right now I am super nervous. It is a little crazy if you think about it.... I am not a nurse and I am being trained in a matter of a couple days before being sent home to give meds and TPN to my child, through a PICC line that feeds into a major vein that leads to her heart. Ready, go!!
Yikes!
Speaking of yikes.... every person who has a PICC is at risk for infection. Liz is not unique in this. Liz is unique though, in that she is a patient who has recurring CDifficile along with a suppressed immune system. If one gets an infection in their PICC line, an antibiotic must be used....if Liz needs an antibiotic, she will develop CDiff. This, especially, is why a PICC was a last resort for Elizabeth's care plan. The Team has decided to use an Ethanol lock, which is a treatment intended to prevent infection of her line. Liz is the first patient at this hospital to use ethanol prophylactic for a PICC. Ethanol is basically alcohol, and I will instill it into the priming space of her line, where it will sit during the hours her TPN is not running. by having the ethanol dwell in this part of the line, bacteria will be less likely to grow. Each night, before I give her TPN, I will aspirate (remove) the Ethanol. Hopefully, using it will greatly reduce Liz's infection risk.

Liz's line is flushed with saline before and after TPN.



After I attached the filter.




There it is. TPN= Total Parenteral Nutrition and Lipids.
 Liz gets her TPN and lipids at night. I start it at 11:00pm and it runs for eight hours.




She does not lay like this all throught the night. Liz is dancer, even in sleep, and she thrashes those pretty arms
around all night.



Eeekkk! Here we go....my first time hooking up the TPN to the PICC line.

There is much more to explain about the while process, but I am too tired to write about it tonight.
Please keep praying for Elizabeth. Tomorrow we are hoping for weight gain and better labs.