Iʼve been avoiding a feeding tube for a while, but I lost five pounds when I was sick with the flu and then pneumonia. Even though five pounds isnʼt a lot of weight, it dropped me down to 115, which is quite a bit lower than my pre-pregnancy weight of 135. Plus, there were times while I was sick when I was hungry but was too worn out to sit up and chew or was coughing so much that eating was impossible. It made me think that it was probably time for a feeding tube even though I was feeling more resigned than anything else.
So we woke up early this past Friday morning to drive down to Emory for my feeding tube procedure. For once we were actually early! We were supposed to arrive by 9:00 and we pulled in at 8:30. I think the reason why we were able to make such good time was because I wasnʼt allowed to eat breakfast. Itʼs amazing how long it takes me to eat. Which is another practical reason to get the procedure.
By the time Jin filled out the paperwork, we only had to wait about 20 more minutes before they took me back to get prepped. Unfortunately, they took me to an open ward so Jin wasnʼt allowed to come with me. Most of the nurses werenʼt able to understand what I was saying which made Jinʼs absence doubly irritating. Because the first nurse lost patience trying to understand me, she ended up attempting to insert an IV into the back of my left hand with a regular sized needle and blew out the vein. It hurt like hell. The next nurse took the time to decipher my speech and used the smallest needle to place the IV in my forearm as I suggested and got it in one try.
I was ready for the procedure around 10:15 and was rolled down the hall to a tiny room. The two nurses and Dr. Cook had to be careful of all my attached wires as they navigated the space. Once I was hooked up to the monitors and had the oxygen flowing up my nose, I double-checked with the doctor that the diameter of the tube he was using would be compatible with a mic-key button. When he responded that it should, I asked him ʽshouldʼ or ʽwillʼ and he changed his phrasing to ʽwillʼ. I hope he’s right, because his first answer didnʼt inspire much confidence.
One of the nurses put a mouthpiece between my teeth while another pushed the drugs that would sedate me enough that I wouldnʼt fight the procedure but would allow me to stay awake. General anesthesia is not given to ALS patients because the doctors worry our weaker respiratory function will fail. Then they put an endoscope in my throat and told me to swallow. I couldnʼt help gagging and coughing as it moved down over the back of my throat. I was told the scope has a camera, a bright light, a grabber, suction, and air. They pumped my stomach full of air to press it against my skin, used the light to locate the stomach from the outside, and poked a hollow needle through the skin into the stomach. Then they put a wire through the needle, which they grabbed with the scope and pulled out my mouth. They used the wire to pull the feeding tube down my throat and out the hole. There was a plastic piece on the tube inside my stomach to keep the tube from coming all the way out and another one on the outside to keep the stomach tight against the skin. Obviously, the procedure wasnʼt pleasant but it was quick. I was back in the open ward by 10:50.
I slept on and off while they tried to find an open room. After they wheeled me over to Jin around 12:15, we were led to a room with two beds, since they still hadnʼt found a private room available. Kyle had come to the hospital at some point while the procedure was being done and came with us to the room. I was glad Jin hadnʼt been waiting all that time by himself, plus heʼd have someone to talk with once I got settled. I knew I wouldnʼt be very good company since the incision in my stomach was beginning to hurt like hell. Moving from the one bed to another made my stomach feel like it was on fire. They gave me Lortab through the feeding tube to relieve some of the pain, but I didnʼt feel as though it was very helpful. When the nurse pushed the medication, I was surprised at how high the tube had been placed. I had pictured it in my mid abdomen, but it was inserted right below the front of my left ribcage.
Shortly after I was settled, they brought in my roommate and her family. Since there were curtains between us, I never saw her, but I heard way too much. It was as though the nurses and doctors had never heard of HIPA. I learned more than I ever wanted to know about the consequences of removing too much of a personʼs digestive tract.
A dietitian came to see us a little while later but didnʼt have too much to say when she learned I would still get the majority of my nutrition by mouth. She did tell us, though, that five bottles of Ensure would meet my daily nutritional needs which is good information to have. Dr. Glass and two others came over from the ALS clinic to check on us around 5:00. I was grateful they stopped in since he found a kink in the tubing that was keeping my stomach from draining. Once that was fixed, my stomachache wasnʼt as painful. The incision was still killing me, though, so Dr. Glass ordered 2 mg of morphine. I wasnʼt impressed with this drug either. As soon as the nurse pushed the morphine, I got a pounding headache and felt nauseous. When my stomach muscles tightened in reaction, I was in more pain than before the morphine had been given.
The pain was actually manageable as long as I could relax and lie still. Since I use my stomach muscles to create volume when I speak, I was using my laptop to communicate. And unfortunately for Jin, laughing hurt so badly it made me cry. I finally wrote him an explanation to tell him that while I realize he uses humor to relieve stress, he was killing me. As soon as I would try to stop from laughing, the pain would make me cry. With every stomach muscle contraction, the pain went a notch higher and wouldnʼt lessen until I could concentrate enough to force the muscles to relax. Jin would try to help, but when he would talk or touch me, that concentration was broken. Iʼm such a mean wife; I basically told him to leave me alone. Jin probably felt like he was being subjected to childbirth all over again..
We were finally moved to a private room a little after 8:00. Since Shelley came to visit and deliver dinner for Jin while we were being moved, she had to wait for a bit so we could tell her where to go. Shelley was entertaining me with her reaction to the nurses; she wanted to find them and make them respond faster to our requests. They were slow, but weʼve learned that itʼs unwise to make a nurse angry. In the hospital, the patient is completely at their mercy. The nurse did finally arrive with the morphine. I had asked to be given the higher dose of 4 mg since I was still in pretty severe pain. I was hoping the headache and nausea that came with my first dose werenʼt related to the drug. Unfortunately, they werenʼt a coincidence, so that was my last try at morphine. I was actually pretty disappointed since Iʼd had high hopes that it would make me pain free. The drug helped a little, but it didnʼt help enough to be worth feeling miserable for 10 minutes after it was administered. I went back to Lortab.
I tried to have Jin go home to get a good nightʼs sleep and see Luke, but he wouldnʼt listen. He wasnʼt impressed with the nurseʼs response time. Poor Luke; he didnʼt see mommy or daddy Saturday morning. Thank goodness Abbie has volunteered to take care of him until Jinʼs mom arrived to take over.
As it was, I ended up being very glad Jin had refused to leave. Getting to the bedside toilet hurt like crazy, but at least we had a system. It would have been a lot more painful if the nurses had attempted to help me on their own. Unfortunately, Jin was exhausted the next day. He said he didnʼt sleep until around 4:00 because he was worried about me. Plus, he was freezing since the nurse didnʼt give him bedding. I guess he didnʼt want to bother her so waited until the tech showed up to check my vitals at 5:00 to ask about sheets and a blanket. I wish Iʼd been paying better attention.
Overall, I felt much better on Saturday. Standing from the bed still hurt, but it didnʼt make me want to cry anymore. I could also move with less pain while lying down and I could talk more easily. The neurologist who came to talk with us that afternoon said the pain should ease off in a few days but wouldnʼt be completely gone for a week or two. Our day nurse, Carolyn, was great and showed Jin how to use and flush the tube. It didnʼt seem too complicated.
We thought Iʼd be able to leave early afternoon, but they wouldnʼt discharge me until Iʼd proven I could tolerate feeding through the tube. Since they wait 24 hours after the procedure before attempting food, the first try should have been around 10:30. The nurse delayed this, though, because I felt nauseous about an hour after she gave me water and Lortab through the tube. Carolyn said it was probably caused by trapped air in my too full belly. I felt better after she opened the tube to release the air. At 1:30 she talked Jin through feeding me half an Ensure, and we went through the process again about three hours later.. Both times I felt a little queasy, but it was pretty mild. I kept quiet since I wanted to go home.
Shelley came by again mid afternoon and went back out to get Jin a late lunch and to pick up some powerade for me. She left around 5:30 when Carolyn told us we could go home. Surprisingly, we were walking out the door an hour later. Wright had stopped by while we were packing up the room so helped make our escape a little more efficient. Since transferring to the over-sized wheelchair/luggage cart already had me feeling a little queasy, the side-to-side wheelchair ride and elevator trip had me fighting back nausea. I thought I was feeling better by the time I was loaded into the truck, but I had to ask Jin to pull over after driving just a few miles. Luckily, I didnʼt get sick and we made it home without incident. I canʼt even imagine how badly that would have hurt.
Jinʼs mom had just finished feeding Luke dinner when we pulled up to the house, so I was able to spend some time with him before I needed to lie down. As usual, Luke didnʼt seem to miss me at all even though I missed him like crazy. I know I should be pleased that heʼs independent and feels secure, but he could miss me a little.J I felt loved later, though, when he brought his favorite doll, Raff, to my bed and gave me goodnight kisses.
Even though Emory hospital was a little sub par, I took home some goodies. The wedge pillow for under my knees and the cushioned booties helped me sleep great last night. Iʼm sure the Vicodin probably helped as well. The incision site still hurts quite a bit, so I’ve been hanging out in bed today. I have my laptop set up next to me, which should keep me from getting bored when Iʼm not napping. I ate an actual dinner last night and breakfast this morning so feel like Iʼm doing pretty well. Plus, Jin has been showing off his new feeding tube skills by supplementing my diet with Ensure. Iʼll hopefully gain the lost weight back quickly.
As usual, this note is longer than I intended! I hope it wasnʼt too graphic for any of you. Prayers for a speedy recovery would be greatly appreciated!