Ethan slept a little later today and wanted to take a bath before we left so we skipped his breakfast drink at RMH. When we got to KKI, Ethan wanted to walk around the feeding floor pulling a wagon. We did about 10 laps before it was time for his breakfast feed.
Ethan has trouble with the breakfast feed every day. I have no idea why. He had trouble with the sweet potatoes and the creamed spinach, so he had his eyes and arms blocked repeatedly during these two foods. The pudding and yogurt went well.
During the breakfast feed, Erica the OT came into the feeding observation room to give me an update on OT progress. (There is a feeding observation room where I can watch Ethan and the feeders through a one way mirror without Ethan knowing anyone is there.) Erica reported that Ethan cut a piece of real pizza with a knife and put small pieces into his mouth and chewed a few times before taking the pizza out of his mouth and putting it back on the tray. This is huge! Yay!
Speech Therapy went great. Ethan ate a banana, 3 types of pretzels and drank water from a cutout cup. He ate small stick pretzels, dipping stick pretzels and square pretzels. He also used his Vantage Lite speech device to make requests during the session. He is finally showing interest in using the speech device so his therapists will start using the device in all sessions (except feeding) starting next week. I thought for sure Ethan and the ST heard me when I exclaimed 'No Way!' in the observation room when Ethan ate the dipping stick and square pretzels!
The feeders decided to phase out the bubble reward at lunch. This makes the meal go much faster. He took 48 bites alternating the preferred foods with 4 bites of creamed spinach: yogurt, creamed spinach, sweet potatoes, creamed spinach, chocolate pudding, creamed spinach. He did great with everything. After lunch, Ethan had a HUMUNGO meltdown in the playroom. There are strict behavior rules while the kids play in the playroom. This reinforces good behavior and lets the kids know the KKI staff is in charge. One rule is that a child plays with one toy and must put the toy away before moving onto the next. Normally, Ethan is great with cleanup. Today, however, was different. He got out the train set with its zillion pieces, played with it and moved on to another toy. When he was prompted to clean up the train, he freaked. He screamed, kicked and fought the staff's attempts to hand over hand cleanup for about 15 minutes. It was ugly.
He had to be dragged in to school with Ms. Rachel.
Pizza puree was introduced at dinner. Just to remind you, Ethan generally eats a few pureed foods, some crunchy, easily dissolvable crackers, and banana. He gets to play with real pizza in OT, but has never successfully eaten it. So the introduction of new foods in the feeding room are all purees.
He did great with pudding, spit his first bite of pizza so he had to go through the eye covering, reintroduction of the spat pizza using a nuk brush in the side of his mouth. He gagged, but swallowed the second bite. Yay. He did great with sweet potatoes, has some trouble with the next round of pizza puree and spinach puree. It was hard to watch because he started falling apart and screaming "No more" and "right there" while pointing to the door. He finally took one more 'easy' bite of pizza puree. During this feed, we had the most staff involved so far-five. We had a person to block arms, one for eyes, a feeder and two data takers. We ended the day with Ethan fairly solid on spinach puree and with a few bites of pizza puree under his belt. He gags on these foods, but is able to swallow them. That means the feeding protocol is working!
We had a good morning, walked many laps of the second floor with the wagon and Ethan had nothing to eat or drink before his breakfast feed. During the breakfast feed, a visiting ST and OT observed his feed with me so I had to field some questions and didn't pay as close attention to the feed. He started out his feed spitting pudding, his most preferred food, he went on to spit sweet potatoes, spinach, and pizza and then seemed to settle down. Yogurt went great.
Ethan reportedly did well in school and speech therapy.
We had our second parent training session this morning where we discussed Triggers for Problem Behaviors. It was very informative, but I can't see easily putting some of the ideas into practice in real life. Keeping an ABC chart of antecedents, behavior and consequence seems like it would be a little tough to do on the fly as Ethan has behavior issues. I'd always be charting things after the fact. We'll see though.
Lunch went very well. The feeders decided to keep the Thomas video on during the entire meal, even if Ethan spits. Previously they turned the video off each time he spit. The feeders alternated preferred foods with 2 bites of pizza. Pureed cream of spinach is now treated as a regular food. He spit the first two introductions of pizza, but did great with the last two pizza introductions.
Ethan cutup and put toast pieces into his mouth in OT, but he wasn't a big fan. He freaked a bit with all the crumbs in his mouth, but he swallowed some crumbs!
We had an appointment in the GI clinic to replace his gtube today. Gtube to gtube replacement is a quick and easy procedure which can be done in office. The staff was nervous about Ethan because he is highly defensive about his gtube area and he is one heck of a strong fighter. I guess he is defensive because of the two bouts of cellulitis and because he has to constantly push his current gtube back in because it is very heavy and pulls itself out several times per day. We decided we would try to replace it in office, but if Ethan fought too much he would have to have the procedure under sedation. All went well in the office and his gtube was swapped with a surface level button, or mickey. This device looks like the valve on a beach ball and I attach a tube to it for feeding. He did awesome and the nurse rewarded him with a Candy Land game which he proudly carried around the rest of the afternoon.
Ethan did a great job at dinner! He was a little distracted because he saw extra Thomas DVD cases behind the dvd player and wanted the feeders to change the DVD during his meal...this was not part of the protocol, so the feeders just ignored him. The persistent little bugger kept trying to 'tell' them throughout the entire meal with pointing and 'right there's. They fed him foods in turn this meal instead of introducing pizza between the other foods. He did great on pudding, coughed and gagged on pizza, but did swallow it, tried to distract the feeders by taking his arm out of his shirt sleeve during spinach, but he swallowed it, and he did great with yogurt. Yay!
Our evening was planned to be laundry night, but fate has a way of throwing a wrench in our plans lately. I sorted my laundry in the morning, so I thought I would be able to put my laundry right into the three washers and dryers in the RMH laundry room when we got back to RMH from KKI.
There were electricians finishing up work in the hallway between our room and the laundry room when we got home. I grabbed my laundry and put in three loads of sheets we'd need for sleeping tonight. So far, so good, the laundry was started and I made a mental note to come back in 40 minutes to change the loads. Within a few minutes the fire alarms started going off and the elevator broke. Shoot. It looked like something the electricians did might have caused issues. The firemen responded and we evacuated. No fire was found, so we were ok to go back up to our rooms. Unfortunately for my laundry plans, two of the three washers had blown a circuit and my sheets were not done, just simmering in a pot of dirty washer water. lovely. They reset the circuit and the washers restarted, but never finished. The washers kept blowing a circuit and the fire alarms kept going off and the firemen kept responding. When the fire alarm drama was over, I ended up pulling the items out of the vats of water and washing them in the one remaining washer. I started my laundry at 4:30 and finally finished and got the beds made by 8pm. In the meantime I got Ethan ready for bed, administered his new medicine through his new gtube, and when the beds were made, I put him in bed. Within minutes the insanity started. No, not the fire alarms this time...
Ethan started couging, then gurgling, then moaning, then puking all over the clean sheets. Did I mention it took me from 4:30 to 8pm to wash them? My first thought was that he had a reaction to his new medicine and he just upchucked his dose along with his purees from his dinner feed. During the course of the night, and more loads of laundry, Ethan puked every hour from 8pm to 5am. I was freaking out because I wasn't sure whether he was having a reaction to the meds or had a bug. Each time he threw up he screamed loudly like he was in pain and fought to get away so the catch bucket didn't really work. The elevator was still out of order and I was trying to figure out how I would get 60 pound Ethan and his stroller down 3 flights of stairs and down the block to the car in the middle of the night in a scary neighborhood to get him to the JHH emergency room. (Yeah, I wasn't thinking straight...lack of sleep, you know....ambulance anyone?) He finally settled down around 5am, so I took a nap and we didn't go to the emergency room after all.
At 8am I called over to KKI to get advice from one of his nurses. Both of Ethan's nurses were off for the day, so I left a message for his feeders that he wouldn't be in today. I explained the situation to his feeder when she called me back and she referred me to the backup nurse. Ethan is scheduled for full days at KKI on Saturday and Sunday this weekend, but Ethan has to be symptom free to return to KKI.
The nurse and the doctor decided it couldn't be the new med, so I just needed to give him Tylenol and Pedialyte. I administered Pedialyte each hour through his new gtube while Ethan lounged in bed. He perked up a little bit, but he refused food and drinks by mouth until I managed to get a banana into him around 6pm. Said banana made a return engagement by 7:30 so it looks like we will miss KKI on Saturday. The verdict is still out on Sunday. I'm starting to wonder if it is more than a coincidence that he has not been able to keep any solid food down since he got his new gtube. I hope it's just a bug.