Happy Presidents Day all!
We did come home from the hospital on Friday at about 4:30 p.m. That’s an hour and a half early or six hours late, depending on how you look at it.
Our weekend was pleasantly uneventful. Andrew had some headaches for the first day or two after we came home, but has otherwise been happy and energetic. If this is the bottom of this round of chemotherapy, we’ll take it.
Since our update is short, I thought I’d go over the differences between TPN and tube feeding. We have done both, and are currently giving Andrew about 750 extra calories through his nose tube.
You may recall that we were not happy about the tube initially, but we now give it credit for much of Andrew’s good health during the last two rounds of chemotherapy.
TPN is pumped directly into the blood stream like IV fluids, but provides more complete nutrition. When Andrew’s digestive system was not functioning last November, TPN was the best way to keep him from starving.
Andrew was given TPN again after his first round of chemotherapy because he was not feeling well enough to eat anything, and he had sores down his throat. It would have been too painful to insert a nose tube.
IVs are too fragile for TPN, so it is administered through a PICC line like Andrew’s, or some other central line. TPN is custom-made by a pharmacist, and costs about $650 per day, plus the cost of saline, heparin, plastic tubes, PICC line dressing changes and pump rental. Thankfully, our insurance covers all of this and our home health care provider delivers supplies to our home as needed.
When we gave TPN at home, I had to inject a bright yellow liquid multivitamin into the bag just before hooking Andrew up. I used a needle to add an exact quantity of sterile water to the powdered vitamin, then sucked it all back into the needle before injecting it into the TPN bag. It sounds easier than it was. I accidentally sprayed multivitamin all over the kitchen more than once.
The risk of infection from TPN is greater than tube feeding because it goes directly to the blood stream. The bacteria wouldn’t come from the TPN, but from the connection between the TPN tube and the PICC line.
For that reason, we clean the end of the PICC line with alcohol wipes every time we access it. We use a saline flush before and after and a heparin flush to prevent clotting after every use of the PICC line. If Andrew needs to go to the bathroom or anywhere else, the bag and pump go with him.
The nose tube is a more natural way of feeding, since the nutrition goes directly to the stomach and through the digestive system the same way food does.
Cleanliness still matters, as it always does with food safety, but the digestive system knows how to handle most bacteria so we don’t have to worry as much about infection. Alcohol wipes are usually not necessary and we use tap water to flush the line and prevent clots. Andrew can be easily unhooked for a few minutes or a few hours.
The nutrition Andrew gets through his nose tube is called Nutren and it is manufactured by Nestle. It is like a vanilla flavored protein drink. A case of 24 cardboard “cans” lasts us about a week and costs a little under $35.
Our insurance covers all of the plastic bags and equipment rental for tube feeding, but will not pay for the Nutren. This baffles me because it is a lot less expensive and we are using it for exactly the same reason we used TPN after Andrew’s first chemotherapy.
When I tried to discuss this with our insurance case manager, I never felt like I got a satisfying explanation for why our Nutren is not covered. The best I could figure is that few people use TPN, and usually not for very long, while many people use Nutren, sometimes as their only source of nutrition for years. It’s all about the bottom line.
To confirm that the tube is in the right spot before we use it, and not in Andrew’s lungs or another scary place, I use an empty syringe to suction out a little of whatever is in Andrew’s stomach. It’s usually evidence of what he ate most recently, and that’s always a fun treat.
One of the best things about the nose tube is that we can give Andrew all of his yucky oral medications through it.
It’s funny how cancer skews our perspective about what is easy and what is difficult. Compared with TPN, nose tube feeding is far less stressful. I am so happy to attach Andrew to Nutren instead of TPN that I don’t spend much time thinking about how much more complicated having a nose tube is compared with having a healthy kid who just eats and drinks like the rest of us.
Just a few more weeks…