Clothes, Supplies and TPN

These onesies (side snap bodysuits) can be had at Walmart for a song and a dance (3 for $8). While in a beach town in New Hampshire, the shopping was quite limited, and so we found ourselves at the big W. This is the only product in the entire superstore that I am in favor of, however it is amazing. Since Bo's line is on his right side, and the shirt does not cross over on the inside, we can draw the line out mid-torso, instead of having to have it come out of a leg hole (by the diaper line) of a regular onesie. With the regular onesies, if he has a blow out over night, the big pool of pee and poo can easily contaminate his line, as the transition points, while threaded, are not hermetically sealed from the environment. The only down side is that they only come in short sleeves, and winter in Michigan gets quite frigid, so now he's in layers.

The top pump is the Curlin 4000, which Critical Care Systems offers. Our friends in Maine, 2 of the 4 oldest living MID affected people in the US, helped to design this. We will get ours next week, and hope it is better than what we have. The next pump is the CADD Prizm. It was provided by our second home infusion company, Apria. This pump is very loud and has a virtually useless alarm system, not to mention an inane user interface. It was obviously designed to be "user friendly" but this just means that you can't control anything on it. The rechargeable battery is as big as the pump itself, hardly convenient, if you ask me. Also, it is attached via a cord, so suddenly you have three pieces of equipment to worry about instead of just two: bag, pump, battery. If you don't want the huge battery pack, then you use a new 9 volt battery every day. Since there is no battery alarm, you have to pitch the battery at the end of the day. What a waste. Also, the tube locking mechanism requires either a key or a penny. So after you've done all these procedures to get vitamins into the TPN bag and attache the tubing to the bag, you go grab a filthy piece of currency, or better, a key that is covered in sticky adhesive because it's taped to the pump (there's no clever attachment other than this).

The last pump pictured is the first we ever used. The Abbott Gemstar is super quiet, has a very sophisticated alarm system, and the tubing locking mechanism is much better designed, not requiring a key of any sort, just a firm click to assure it's locked in (and it won't work if it's not locked in). As far as we know, only HomeMed, the home infusion company of the University of Michigan offers this pump. The rechargeable battery is about a third the size of the pump and attached firmly to the bottom of the pump, essentially making the apparatus appear an inch and a half longer. If you want to minimize size and weight, 2 AA batteries will operate the pump and they last 2-3 days. There's an alarm that warns you when the batteries are almost drained.

We currently have a huge hospital pump (from Apria) to infuse the Omegaven, but Critical Care says a second Curlin is all we need. YAY! I hope that's true. We tried to switch back to HomeMed, but since the UM refused to pursue the Omegaven protocol for us, the home infusion company wouldn't support our use of Omegaven, either. While we were happy to switch our medical care to DeVos Children's Hospital in Grand Rapids, MI, we really liked the service from HomeMed. The pharmacists, service, pumps, and supplies were really excellent. Shame.