Thursday, January 15, 2015

The gold

So, this is the gold at our house. Every eight hours, we go through the routine of giving Little Dorrit her Ceprotin and it goes something like this:
  • Remove the Ceprotin from the refrigerator 30 minutes to an hour before using to let it come to room temperature.
  • Prepare your space by cleaning with Clorox wipes and washing your hands. Set out all your materials including: 1 vial of Ceprotin powder, 1 vial of sterile water, 1 empty syringe, 1 red syringe cap, 1 filter needle, 1 transfer needle, 2-3 alcohol preps, 2 prefilled syringes of saline, 1 prefilled syringe of heparin. (Thankfully, everything but the prefilled syringes come in a sort of single use kit already packaged for us).
  • Pop caps off Ceprotin and sterile water vials and scrub tops with alcohol preps for 30 seconds. Let dry for 30 seconds.
  • Uncap the transfer needle (pink) and pierce the cap of the sterile water vial. Pull off other end of transfer needle cap. Invert sterile water vial and pierce the vial containing Ceprotin powder with transfer needle. The water is sucked into the Ceprotin vial.
  • Gently swirl the water with the powder until the powder is dissolved. Because the Ceprotin is a human product, you cannot shake the vial to dissolve the powder or the proteins could be damaged.
  • Twist off cap to filter needle and attach needle base to empty syringe. Pull off the other end of the filter needle revealing the sharp needle.
  • Pull back on the syringe. Pierce the now reconstituted Ceprotin in liquid form and fill the syringe to 4 ml. This can actually be a little tricky because the vials we are working with are little vacuums and will suck in air from the syringe even as you are trying to pull out the liquid. Obviously, we are still amateurs at this and will hopefully figure out our own set of best practices.
  • Remove filter needle and remove bubbles from the now filled syringe. Cap with red syringe cap.
  • Remove bubbles from two saline syringes and one heparin syringe.
So, that is just preparing her medication. After that, we administer it:
  • Scrub the Broviac cap for 30 seconds with alcohol prep. Let dry for 30 seconds.
  • Uncap syringe containing saline and twist onto Broviac. Slowly push in 5 ml.
  • Uncap Ceprotin syringe and twist on. Push in 1 ml per minute over four minutes for a total of 4 ml.
  • Administer 5 ml more of saline and .5 ml of heparin.
And that is what we do every 8 hours. It takes about an hour from start to finish although at least 30 minutes of that time is waiting for the vials to come to room temperature. The rest takes about 20-25 minutes. We've found it is easiest to give Little Dorrit her Ceprotin when she is asleep, if possible. Besides giving her Ceprotin every 8 hours, she also gets a pain medication three times a day in case she is feeling any ghost pains in her three toes that are in the process of self-amputating. And she also gets 1 ml of vitamin D each day. 

In between all of the medication, she gets fed every 3 hours. If she is awake, we try to give her a bottle and she's been doing great taking a bottle although she gets tuckered out after drinking about 1 ounce and she is supposed to have 3 ounces at every feeding. Whatever she doesn't take through a bottle we give her through her G-button. For her feedings, we are using breast milk during the day and at night when she is on a continuous feed, she gets formula. I am still pumping but not sure how much longer I will continue to do that. We are adjusting to Little Dorrit's schedule but at some point I will need to go back to work so we will need to make more adjustments at that time.

I know this was a super long and probably rather boring post since much of it reads like an instruction manual but I just wanted to give everyone a picture of how she is doing and what we are doing every day. Yesterday, we saw her local pediatrician for the first time and her Protein C levels are doing well. So, yay, us! And yay for staying out of the hospital for more than a week!


Jani said...

Wow, look at you guys go! Amazing that you can do all that while she is sleeping. I'm just so thrilled for you guys.

Thankful Day said...

Want to come see her but am waiting for a go ahead from y'all. I know it's been a complicated adjustment. Give her and brother smooches from grandma!!

Amber T said...

Wow...what a detailed and painstaking process. Thank goodness LD has two parents who are so intelligent, responsible, and willing to do all the work she needs. I know that Heavenly Father sees your diligence, your service, your frustrations, your fears, your tiredness, your love.

Crystal reser said...

praying for her to be completely healed and for y'all to keep your strength ..

Mary said...

Oh, wow!! You are amazing!! What a lucky baby to have such wonderful parents!! Keeping you in our prayers!!

Melissa Drumeller said...

I loved reading all the details! Have you guys thought about being on Medical Mysteries? They would love your story! Maybe they even pay :)