Feeding Tube Blues

This is an experiment in new technology for me. Roger took the digital camera to Calgary, where he is on a business trip. Left cameraless and wanting to post new pictures, I plugged in the webcam which comes with the laptop in the transplant room. These pictures are the result - not the best resolution and a little blurry, but they do the trick.

At least you can see that Benjamin is happy and won't stay still for anything. And he has a feeding tube. One of the first things they did Thursday morning post-transplant was put in the tube. A very common and totally expected side effect of the conditioning is mucositis - basically cold sores all the way from your mouth to your gut and possibly further. We escaped the worst of this with his first treatment, but got it bad now. The frustrating thing is that Ben hasn't lost his appetite - it's simply too painful to swallow even his own saliva. So his meals are now Pediasure Plus four times daily, as well as 12 hours continuous at a slow rate overnight to ensure he maintains his caloric intake. We were on a morphine pump, but that was removed today. And although Ben refuses to allow anybody to suction his mouth, he is quite adept at doing it himself. The feeding tube has an added bonus as it makes it possible for Benjamin to take his oral meds, but it is not without problems. There is always the risk that Ben pulls it out or throws it up, both of which happened on Sunday. While normally it is a simple procedure to insert a feeding tube, the worse the mucositis is, the more painful it is to insert the feeding tube.

Other than that, however, Benjamin has weathered his first week post-transplant remarkably well. Friday was his lowest point, and except for some up-chucking on Sunday with the tube, he's done great. As expected Ben has required several transfusions of blood and platelets. But his energy levels are just going up and up. I don't know what they are giving him, but I want some! I even called the doctor on it yesterday. He promised us fatigue and instead we get a Tasmanian devil attached to a Christmas tree IV pole with up to 6 separate lines and a feeding tube. You control that! You can see a bit of the X-mas tree behind Ben in the 2nd picture. He hasn't been this connected since his ICU days (exactly one year ago, by the way). And every pump on the tree except the one for his feeding tube has a line running into his Broviac. Which is a story unto itself.

Faithful readers might recall the problems we had with Broviac #2, which culminated in an emergency New Year's Eve trip to the operating room. Well this one, Broviac #4, is starting down the same path of destruction. The outer lining of the tubing has once again disconnected from the casing covering the split of the two lumens. A call has already been put in for the surgeons to come in and make an assessment. Since Benjamin is still awaiting engraftment of the donor stem cells and is very open to any infections (he's even given himself E coli), much greater care must be taken with the decisions made on #4 than the brush-offs we got with #2. Last time the issue was pushed aside for 2 months until there was no choice anymore. We'll see what happens this time. Maybe I should contact the manufacturer directly and ask them what they suggest for a recurring problem with one of their products: PRODUCT RECALL!

Anyways, time to change Ben's diaper, make up my bed, and get some shut-eye. After all, Ben doesn't care a hoot how much sleep I've gotten when he's up and ready to go at 6:30 AM.