Thursday, March 21, 2013

Chapter 17: Eating

When Kayda came to us she had had major problems with aspiration throughout her young life. She had had a swallowing assessment done when she was about 3 years old and it showed most of the food going down into her lungs or up through her nose. She was also unable to swallow, suck or cough. The decision was made that there would be no oral feeding. As time went on and Kayda started getting stronger and was clearly swallowing and sucking and seemed to be handling her saliva, therapists started suggesting that we should reconsider oral feeding. When the staff on the feeding assessment team had been approached about it they felt that it was a waste of their time to reassess Kayda. During her hospitalizations in October one of the therapists had asked me about this. I said that the only way to get a feeding assessment done for Kayda would be if I made a fuss or pushed the issue. This physio noted how much Kayda liked having things in her mouth and suggested I push the issue and ask again. She had also taught herself how to cough during her illness. I don’t know why I did it, I guess I just wanted to see what happened; one day I put a tiny amount of fruit on a spoon and put it in Kayda’s mouth. She swallowed. She didn’t cough or splutter. I put some more in her mouth. She swallowed again and seemed just fine. I was scared to death. I knew how risky this was. Each day I gave her a little more and she seemed to enjoy it. As I thought over what the purpose of feeding her could be I felt it was only for her enjoyment. I didn’t think she would ever be able to take in enough to make a difference in the amount of tube feedings she received. Well, once again, Kayda proved me wrong. By the end of January she was eating 3 full meals a day and only getting liquids through her tube!!!!! When I phoned the dietician who managed Kayda’s intake in mid December to get some guidelines on when I could start cutting back on formula, she said “I think she should have a feeding assessment.” “Good idea” I said, laughing inwardly. The assessment wasn’t until mid March. By that time she’d been eating orally for over 3 months with no problems whatsoever. She did cough from time to time. She couldn’t handle anything with rice in it no matter how finely I pureed it. I made all of her food except for her meat. As I knew how risky it was to feed Kayda orally, I was the only one who fed her. I went in to school every day at lunch time to feed her. We did have our respite people trained but no one else was allowed to feed her. It was a pet peeve of mine that as long as she was tube fed people were afraid to care for her. Once she started eating orally, they’d say, oh now I’ll feed her. Oh no you won’t was always my inward response. People just don’t realize how easy and safe tube feeding is compared to oral feeding for children like Kayda. The feeding assessment was at the children’s long term facility that Kayda had been in when we first met her. Although it was only an hour from our home, I made arrangements to stay at a house run by Easter Seals in the city. Her appointments started at 7 am and in order to be on time, we’d have had to leave home at 5 because of rush hour and I would have had to get her up around 3 to have her ready for 5. The first day was a series of appointments with various professionals including the dietician, a pediatrician and an OT and speech pathologist. The last two therapists also observed me feeding Kayda. They had asked me to bring foods that she had trouble with as well as those she managed fine. Kayda was cooperative and did cough and choke on the dish that had rice in it. Based on what they saw on that day, both therapists were convinced that Kayda was aspirating on her food. The next morning we went to the Children’s Hospital so that she could have a video fluoroscopy done. We arrived to find the therapists we’d seen the previous day waiting for us. They took Kayda to radiology while I went and registered her. When I came in to the room Kayda was screaming. The minute she heard my voice she settled down. This was the first time that she panicked when I’d left her somewhere. A video fluoroscopy is a fascinating test. The child is sat at a variety of angles that they would normally be fed at, and fed a variety of textures of food that have been mixed with barium. Pictures are then taken of the person swallowing. The radiologist supervising the test that day was the same person who had done the previous assessment on Kayda. As the therapists spoke with him, I heard them telling him that they were sure she was aspirating. I fed her while they watched what was happening on the screen. Much to their amazement (not mine) she wasn’t aspirating and no food was going up her nose. The pictures did show, though that she had a delayed swallow and that food pooled right near the opening to her esophagus. Both of these put her at risk for aspiration. That afternoon, we had a meeting of our cast of thousands at the Long Term Care facility. Three people from the school came as well as her local physio, speech and occupational therapists and her legal guardian and service coordinator. The video from the fluoroscopy was shown. The recommendations were that it was really risky to feed her orally but that as she was enjoying it, it could continue. It was recommended that only someone who knew her well and had been trained to do so feed her. They also said that she did not need to be fed by a nurse with a suction machine handy, which is what the school people had been saying. It was agreed that after I was satisfied with how she was being fed at school, I could stop coming in every day at lunchtime. Incidentally, that was the last long period of time that Kayda ate orally. Various illnesses and other events kept interfering and making it difficult for her to eat. She was still always (when well) given the option to eat orally but wasn’t pushed if she chose not to. That’s the benefit of having the feeding tube. You don’t have to force a child to eat when they don’t feel like it. I was always nervous when I fed her, afraid that she would aspirate, even though she never did. Two days after Kayda’s feeding assessment she and I went to visit a friend and her family in Winnipeg. We had a real nice visit, despite the fact that Kayda was on her sleeping only every 2nd or 3rd night pattern. As we shared a room my sleep was quite interrupted. Laura and I had worked together in a daycare in a small town in BC when we were in our early 20s. She had 3 children at the time we visited her. She’d had almost no exposure to a child with Kayda’s needs. It was the first time in well over 10 years that Laura and I had time to visit. We had timed our visit well as Liz’s children were on their Spring Break the week after. Laura’s youngest child was the same age as Kayda and also a foster child. Her needs were very different though. Near the end of the week A got a cold. She sat across from Kayda at the dinner table. Whenever Kayda has a cold it’s really hard to get her to cough so any cough is met with applause. I kept having to stop myself from saying “good cough A” each time she coughed. On the flight home, I knew something wasn’t right with Kayda. She was breathing really rapidly and just wasn’t herself. We had an hour stopover in Calgary and I almost told the flight attendants we needed to get off there. She relaxed a bit during the time we were on the ground as I was able to let her lie across all of the seats. I did alert the flight attendant that came on in Calgary that she was having a little trouble. She made sure that they took on extra oxygen. It was a very tense flight but we made it home. I knew that night that she was sick but as she was asleep I just left her. By 11 the next morning we were on our way to the hospital via ambulance. She had viral pneumonia and a severe flare up of her asthma. She was in the hospital for a week.

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