October 13 ... an historical day in our life. It's our one year anniversary of being on TPN. I know I mention it often but never really showed any of the process. So here goes.
Weekly, we get a bunch of supplies. These are just some of the supplies. Including gloves, alcohol, tubing, medicines, needles, syringes, etc.
I know everyone handles their supplies differently but I like to spread them all out and then organize them into two piles. Disconnect and Connect. You see, every day, when he is hooked up to TPN there are certain supplies that I need. It varies per day because some days he gets lipids (fats) and other days he does not. Some days he is on Ethanol lock therapy and others he is not. Because the necessary supplies vary a bit, I like to think it through all at once and not miss anything.
Below is a scene of one week of supplies (minus the TPN itself and the vitamins which are stored in the refrigerator).
I put the Connect items into larger bags labeled by the day "Sun", "Mon". Then the smaller bags are the Disconnect supplies also labeled by day. Then I put them in a bucket so I can just grab and go for the day. (Been a lifesaver on more than one occassion when I was running late!) This particular week, they accidentally sent two weeks of supplies so I have two buckets.
Every day Manny is connected for 20 hours. When it's time to disconnect him, I turn off the machine. I disconnect the tubing from him. Wipe with alcohol (at least 20 seconds) and then on Sunday, Monday, Wednesday and Friday I will put in 10 ccs of saline flush followed by 3 ccs of heparin. Clamp. Swab cap. On Tuesday, Thursday and Saturday, it's basically the same but I flush with 20 ccs of saline and then administer the .3 of ethanol.
Then he is tether free for 4 hours. I try to time this for about 10am-2pm. Why then? Those are the main hours when we're out and about shopping, doctor visits, etc. And it's just easier on me and him to not be connected if we can avoid it.
The TPN bag needs to be set out for about 2 hours before connecting to him. Why? It's cold and it goes straight into the veins. It can cause temperature issues.
When it's time to reconnect, I get out the supplies, the vitamins and the TPN bag. Then I put 5ccs of water from a syringe via a needle into the vitamins. Reconstitute. Withdraw and put into the TPN via a different needle. TPN is clear ... looks like water. The vitamins are a distinct yellow and it colors the bag that usual color you see when you see TPN. (Except on Monday, Wednesday and Friday when we get Lipids and then the bag is white like milk.)
Then it's time for tubing and I connect it to Manny. To do that, I do alcohol, syringe of 10 ccs of saline and then connect. Except for Ethanol days when I withdraw the ethanol along with about 1/2 cc of blood to make sure I got it all. Then flush with 20 ccs. Then connect.
During the day, we put it in a black backpack. When I carry Manny around, it's on my shoulder. When he's in his high chair or wheelchair, it's with him. You've probably seen it in a million pictures of him.
At night, we hang the bag on an IV pole. It works better that way. Also, the pump needs to be plugged in so we do that at night and it runs by battery by day.
So there you have it! TPN supplies. After doing for a year, it's a no brainer. I could probably do it in my sleep. But I tell you, the first few dozen times, you FREAK OUT doing it. Afterall, I'm about to connect "food" directly into my kid's veins, the one right above his heart! In the hospital, I'm not allowed to touch it. In fact, two nurses have to certify the whole process and sign off on it. And here, I'm doing it all alone. But by now, I trust ME more than I trust anyone else.
Another part of TPN is weekly blood draws. Our home health nurse, Melody comes by to do it. She also takes his vitals.
And the last part of TPN is the dressing changes. This happens about once a week. I'll have to take pictures of that whole process some time. Pretty fascinating too I think. I also do the dressing changes.
Now you're all officially certified in TPN supplies! Ha.