On Thursday, I had an emergency. My PEG feeding tube came out and my aide found herself holding it in her hand. I knew it wasn't a life-threatening occurrence, but she was rather freaked out. Since I had an empty stomach, no sickening liquid came pouring out, and I put the balloon back inside my belly and put surgical tape around it so it would stay in, and off we went to the Emergency Room of Forest Hills Hospital aka North Shore/Long Island Jewish Hospital. For twenty five years that I have been in Rego Park, this hospital has seen me throuh two sprained ankles, a slashed thumb and a broken toe pre-ALS, and a shattered wrist and subsequent surgery, as well as an injured foot post-ALS. And most recently [I believe about 2 years ago], a horrendous experience when the tip of my PE tube came off. At that time, it seemed nobody had ever seen a PEG tube before, and the attending doctor tried to pull it out, nearly killing me with pain. I ended up going to Beth Israel Hospital, where my ALS team was at the time, and getting a new tip put on in about 2 minutes by a nurse in the GI Department.
So, I really didn't want to go to that local hospital, and called the doctor who did my PEG replacement last September, who was less than helpful. He told me to "just go to any emergency room. I was not optimistic when I entered the ER, but they took me quickly and the attending doctor looked at my PE tube and said "Okay, we'll have to change this" and sent a nurse up to the GI department to get a tube. He seemed rather surprised that I didn't have an extra one, and told me I should call my doctor and get two extra tubes to carry with me next time. Anyway, the tube has a balloon on the end which, when inflated, holds in the tube. Occasionally, the balloon deflates and so the tube cannot stay in place anymore. In four years that I had the last tube, this never happened. But I was told it could happen and that it wasn't life-threatening and had to be fixed as soon as possible. Then, they x-rayed the site to make sure the tube was placed properly. Within three hours of arriving at the ER, we were on our way home.
I had been invited to attend a meeting of the consumer board of Concepts of Independence, the NYC agency that administers the CD-PAP [Consumer Directed Personal Assistant Program] through which my aides are paid. This is a wonderful program by which I hire my own home health aides and we are not bound through the rules of an agency. Early in my home care, I had terrible experiences with the Visiting Nurse Services, who would send different aides who didn't know me or my disease and I had some difficult days and nights. I also had a nurse who would come to visit and yell at me because I wasn't "getting better" and finally told me one day "we are having trouble finding aides to come to work with you, because they say the case is too hard". Anyway, I was excited about being invited to this meeting, but I will have to postpone until the next time they meet.
My wheelchair is fixed and it is wonderful. However, the MDA Cornell ALS Clinic wants to get me a whole new wheelchair, which usually is not approved before five years. But they feel that with the progression of my disease, this wheelchair no longer meets my needs. I'm not sure it ever completely did. I also got a new bi-pap/ventilator combination called a Trilogy. I went for my quarterly ALS clinic appointment a couple of weeks ago, and thanked Dr. Wu for speaking to my primary care doctor to get my blood pressure medication changed from Azor to Benicar HCT with a diuretic. Now my feet look like feet again. I can even wear regular shoes sometimes. The shoes for my new braces are a problem, however. The podiatrist ordered shoes but they are too small, and he says I have to get custom-made shoes. These are going to be very expensive, and not covered by insurance. So I have to make payments on my credit cards until I have about $350 of credit to use. I'm happy to say I can pay the bills with no problem, but I have so little left over that I am lucky to be able to buy groceries, let alone custom-made shoes. Forget theater or baseball games this summer; that won't be a remote possibility. I'll have very little pleasure or fun for a long while, but the shoes are a lot more important.
