The main reason I decided to make our blog public again, was for other families that might going through the same thing we are. I would have loved to find a blog like this when we were just starting out. I was hungry for some real life info!
Because of Ruby's disease, she does not digest food properly. Her body cannot break down fat, or absorb vitamins, etc. So, she was put on TPN, which means Total Parenteral Nutrition. It goes through her PICC line that is in her arm. It goes directly into her blood stream, bypassing the digestive system. Right now she is on it for 16 hours a day. And, to hook her up, and disconnect takes some time...here is what it entails:
2 or 3 hours before needing to hook her up, take bag out of fridge so it will be at room temperature. If we forget then the only way to heat it up is to use body heat. If we were to hook her up with it being cold, it would make her cold!
Then I have to add vitamins to the bag. Wash hands, and then get everything set up. This is the set up for the vitamins. Wash hands again.
Remove caps, and alcohol swap the top. We were taught hold the swab like this so we don't touch the top.
Then draw back 4mLs, push the air into the bottle, and then draw 4 mLs of the first vitamin. Then next, draw back 1 mL, push into bottle, and draw 1mL.
Now all the vitamins are in the syringe.
Now I have to clean the port that I will be injecting the vitamins into. Since I do not have 8 arms, I couldn't take a picture of this part. I have to swap the top with 5 alcohol swap sticks, 6 iodine swab sticks, and then one more alcohol stick. (If I touch the top, or anything else touches it, I have to start over.)
Once the top is sterilized, then I inject the vitamins into the bag of TPN.
Again, no 8 arms, so this is the tubing that I connect and prime with TPN. I have to squeeze the bag super hard (my hands usually cramps up), until all the tubing and air filter are full of TPN, and there is NO air. Air is very bad to have in the line. So this takes awhile to make sure everything is perfect.
Then I stick the end inside of a package of alcohol and it is all ready to be hooked up to Ruby.
Then the Hook Up:
Wash hands, and get 6 more alcohol and 6 more iodine out. Saline flush also has to be prepared. Wash hands again.
Clean her PICC with the 6 and 6.
Remove all the air from the saline syringe.
Flush
Without touching the end of her PICC with anything and carefully removing the cap of the TPN with out touching it, connect the two. If anything happens to touch them, I have to start all the way back to the beginning.
all hooked up and ready to roll!
Then I have to program the pump. Things for her program know:
Amount to be infused: 332mL, container size: 377
taper up: 1 hour, taper down: 1 hour. total time: 16 hours, KVO rate: 5
Then I connect the cassette to the pump, push start and we are done!
UNLESS: there is air in the line. Then we start over. And we cry.
This is the mess from a very uneventful hood up. Usually it is double, or triple the amount of trash at the end.
So, now you know why I am pretty busy around dinner time. While you are chopping carrots, I am sterilizing my heart out!
There ya go, all you ever cared to know about TPN.
p.s. When we came home her with her on the antibiotics, I had to go into her line 5 times a day. And had to go through most of this process that many times. So glad when that was done!
Because of Ruby's disease, she does not digest food properly. Her body cannot break down fat, or absorb vitamins, etc. So, she was put on TPN, which means Total Parenteral Nutrition. It goes through her PICC line that is in her arm. It goes directly into her blood stream, bypassing the digestive system. Right now she is on it for 16 hours a day. And, to hook her up, and disconnect takes some time...here is what it entails:
2 or 3 hours before needing to hook her up, take bag out of fridge so it will be at room temperature. If we forget then the only way to heat it up is to use body heat. If we were to hook her up with it being cold, it would make her cold!
Then I have to add vitamins to the bag. Wash hands, and then get everything set up. This is the set up for the vitamins. Wash hands again.
Remove caps, and alcohol swap the top. We were taught hold the swab like this so we don't touch the top.
Then draw back 4mLs, push the air into the bottle, and then draw 4 mLs of the first vitamin. Then next, draw back 1 mL, push into bottle, and draw 1mL.
Now all the vitamins are in the syringe.
Now I have to clean the port that I will be injecting the vitamins into. Since I do not have 8 arms, I couldn't take a picture of this part. I have to swap the top with 5 alcohol swap sticks, 6 iodine swab sticks, and then one more alcohol stick. (If I touch the top, or anything else touches it, I have to start over.)
Once the top is sterilized, then I inject the vitamins into the bag of TPN.
Again, no 8 arms, so this is the tubing that I connect and prime with TPN. I have to squeeze the bag super hard (my hands usually cramps up), until all the tubing and air filter are full of TPN, and there is NO air. Air is very bad to have in the line. So this takes awhile to make sure everything is perfect.
Then I stick the end inside of a package of alcohol and it is all ready to be hooked up to Ruby.
Then the Hook Up:
Wash hands, and get 6 more alcohol and 6 more iodine out. Saline flush also has to be prepared. Wash hands again.
Clean her PICC with the 6 and 6.
Remove all the air from the saline syringe.
Flush
Without touching the end of her PICC with anything and carefully removing the cap of the TPN with out touching it, connect the two. If anything happens to touch them, I have to start all the way back to the beginning.
all hooked up and ready to roll!
Then I have to program the pump. Things for her program know:Amount to be infused: 332mL, container size: 377
taper up: 1 hour, taper down: 1 hour. total time: 16 hours, KVO rate: 5
Then I connect the cassette to the pump, push start and we are done!UNLESS: there is air in the line. Then we start over. And we cry.
This is the mess from a very uneventful hood up. Usually it is double, or triple the amount of trash at the end.
So, now you know why I am pretty busy around dinner time. While you are chopping carrots, I am sterilizing my heart out!
There ya go, all you ever cared to know about TPN.
p.s. When we came home her with her on the antibiotics, I had to go into her line 5 times a day. And had to go through most of this process that many times. So glad when that was done!
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11 comments:
I have ran the hospital at home many times with four little people clinging to my legs in the process. Big HUGS! I know the HELL!
But I still preferred it to the PICU.
Thinking of you constantly!
Nurse Ani to the rescue. Sounds like you're doing a great job. Ruby's in my prayers.
Most of us did not realize all the work that having Ruby at home requires of you. This is incredible! I am so very proud of you, Ani. Prayers are continuing for our sweet little Ruby and those who love her.
You are so awesome! I feel overwhelmed with doing stupid stuff like laundry and you do a much bigger & much more important job of taking good care of Ruby AND you still get out of the house to do fun stuff with your kids. You are such a superstar!!
You are awesome! I know this is so difficult but you are handling it so well! It is so nice to see you home too :) i love the play by play as well - I know this way is much better than having to tell everyone the process individually over and over again!
Oh geez Ani. How do you remember all of that? I am glad you post this stuff although I am sure you are sick of thinking about it. Also I just love how Ruby adores you. I think maybe you were besties up in heaven.:)
holy cow! this is fascinating to me! i can't believe all of that! i had no idea what kind of things you have to do! and obviously, i still don't, but this gave me a glimpse of it. you are a hero!
oh, and i wouldn't be making dinner either :)
Now that is a task. My question is, what does Kate do during this whole time? I can just imagine Kyle coming up and pulling on my leg and getting in the way while trying to do such an important, precise thing and me going crazy!
hi ani, I found your blog through your friend brynn d.
I'm so overwhelmed and inspired by your post, you are an amazing mom. I can't stop crying, partly because you are so strong to care for your daughters the way you do and also cause I feel encouraged after reading your post knowing that motherhood is amazing but also extremely difficult and I'm not alone-even if my kids challenges are different.
thanks for posting so honestly and sharing with all of us!
I got tears in my eyes reading this Ani. I will never complain about nursing the twins again. My heart literally HURTS for you and sweet Ruby.
Wow, you are an incredible woman.
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