This morning we planned to go out to the horse races with Mark's Uncle Jim and Aunt Shirley so Ethan needed a bath. Our room in the Ronald McDonald House is similar to a hotel room, but the bathroom is rather small. The floor space is only about 2 feet by 3 feet with the toilet facing the sink with the door between them and the bathtub directly across from the door. Think powder room with a tub. I filled the bathtub, stripped Ethan down and sat him on the potty. He's at the stage where he wants his privacy, so I stepped out of the bathroom...all of two steps away.
As quick as a wink, Ethan hopped off the potty, pulled the door shut and locked it! Then he hopped in the full tub. Man, that kid moves fast! I asked Ethan to open the door (repeatedly) and I knocked to see if he would answer. No luck, so I grabbed a Q-tip from the desk, broke it in half and tried to pop the lock, but because the doorknob is commercial grade, it had a different lock mechanism and the Q-tip wouldn't work. I tried a butter knife, but couldn't get that to work either. I could hear Ethan in the tub, and I thought he would be fine, so I ran to the kitchen to ask if anyone knew how to get the door unlocked from the outside, they didn't, so I grabbed a few kitchen utensils and ran back and tried those too. No luck. I still heard Ethan splashing in the tub and I asked him again, to open the door...no luck. I was getting really worried by this time so I ran down to the first floor and asked the house mom. She said no one had ever done that before, so she didn't know to open it, but she grabbed her key ring and came up. She tried every key while I re-tried the butter knife. The combination of the two seemed to work and the door finally popped open. Whew!
I thanked the house mom, who said that had never happened at the RMH before, (I can't believe that), and finished Ethan's bath. Mr. Swimmy loves his bath! When I helped him out of the tub to the mat, he said 'Uh Oh' and peed all over the bathmat. I guess Ethan was done with the bath, thank you very much!
The horse race outing with Jim and Shirley was very nice. It was held at Shawan Downs, outside of Baltimore. Shawan Downs is a beautiful, large farm on situated on a country hillside. It was a gorgeous day and the kids were adorable on their miniature ponies in their jockey silks. Jim and Shirley's granddaughter, Sophie, who is 6, came in 3rd in her race.
Ethan had a rough night last night. Shortly after going to bed he sat up and did his 're-swallowing' thing. Sometimes Ethan wakes up in the middle of the night, sits up in bed and it sounds like he is swallowing over and over and over again. We can also hear his stomach gurgling when this happens. We think this is acid reflux and he takes an antacid daily. During this episode, Ethan signed for a drink. We're not allowed to have any food or drinks in our rooms at RMH, so I filled an empty sippy cup with water and gave it to him. He drank the whole thing! This is significant because he doesn't usually drink water, only pink or chocolate milk. His KKI Speech Therapist has been working on water, but usually only an ounce a session. The sippy cup probably had 6-8 ounces and he drank it all, yay! Ethan tossed and turned the rest of the night, not so yay.
By Monday morning, he was crabby and didn't want to go to KKI. He didn't want to step in the scale in triage, and he didn't want to go into the feeding room.
Breakfast was a fiasco. Ethan fought and spit on every bite of the meal. He screamed those dreadful primal screams and they used a blocker to block his arms during the meal.
At 10:30, we went out to the Therapy Garden and had fun kicking a ball and playing for about an hour.
Ethan drank water and ate a tiny stick pretzel (a preferred food) in Speech Therapy. He licked and 'kissed' a square pretzel, but wouldn't take a bite. All in all it was a good ST session. In case you're wondering why he licked and kissed a pretzel, those are the steps to getting him to take a bite. He has to touch the food, pick it up, kiss it, lick it then stick it in his mouth and take a bite. Apparently he's ready to date the square pretzel, but not make a commitment.
Lunch went great, I think he was hungry and worn out from the breakfast fight.
At noon we had an all team meeting where each area (Behavior Psychology, Nursing, Nutrition, Feeding, OT, and ST) presented their status on Ethan. It was decided that Ethan will now start Breakfast 15 minutes later each day so he can have more time to relax before we begin our day. We will also need to come in this weekend for feedings so we'll be at the hospital all day for at least 12 days in a row. He will be introduced to a new food on Tuesday. It will be creamed spinach, which is close in taste to the spinach souffle he takes now. I also need to get more fluids in him, because he's low.
My assignment is to think of ways to get Ethan to do what we want him to do instead of thinking of why he does what he does. This is going to be a mindset change for me because I'm always trying to figure out why he does what he does. Dang, I wish he could talk. We also need to challenge him more. Ethan is capable of doing way more than he currently does. True that!
I gave him fluids via tube after the meeting. He got 6ounces and threw up 2 ounces. Oh well, at least we were on the plus side.
Dinner was awesome. He took all bites and proactively said 'Ah' after bites! Saying 'Ah' is part of the process, he takes a bite, swallows, then the feeder says 'Good Job taking your bite. Show me' and Ethan has to say 'Ah' and open his mouth to show her that he swallowed.
Our morning routine was so calm! We had a great night's sleep, great cooperation in getting ready and to KKI, he weighed in great, he played in the playroom great, but when the feeders came to get him for breakfast, the whole picture changed.
Ethan had to be dragged in to the feeding room for breakfast, he screamed, fought and spit the entire meal and he even slapped the feeder in the face when the blocker missed his swing by a millisecond. These were not new foods, they were his preferred foods. I have no idea what set him off and neither does the feeding team.
Ethan started school at KKI today and I started parent training. We discussed the 'Whys of Behavior' in parent training.
Lunch included a few changes. The protocol changed to include facial blocking when Ethan spits. There are two blockers behind him now, one to block hits and keep him from injuring himself during the meal, and the new blocker, who will cover Ethan's eyes for 30 seconds each time he spits. A NEW FOOD was introduced as well! Finally! Ethan will have to eat 2 bites of creamed spinach after each round of his preferred foods. I think total bites for the meal is 48. Dr. Gulotta came in to observe the meal and Ethan did WAY, WAY BETTER than I expected. He took a total of 2 and a half bites of the creamed spinach and we could tell he was working to swallow them. He gagged a bit and spit at first, but he looked like he was trying. I guess that facial blocking worked. I was soooo excited!
Ethan had OT after lunch and he did not want to go, he wanted to continue to pull a wagon around the hallway. We did about 10 laps of the second floor hallway before we went down for OT, but I guess Ethan wasn't done yet.
The plan for dinner is to increase the number of bites of spinach to 3 between each of his preferred foods. The total number of bites will remain at 48. Ethan ate 9 more bites of the creamed spinach. He gagged a few times, but got it down! Yay! That's a total of 11.5 bites of a new food on the first day, an Ethan O'Brien record!
We also found out today that Ethan will be swapped from his bulky g-tube to a button on Thursday afternoon in the GI clinic.
We had a showdown when we got back to the Ronald McDonald House. Ethan was mad that I put him in his stroller to cross the street after he refused to hold my hand. When we got to the RMH ramp, he grabbed onto the railing and tipped his stroller. He held tight for about 15 minutes and hollered at me before we were able to go into the house. People are so nice here, I had at least 3 different people stop to ask if they could help while Ethan was having his little fit outside. Sweet.
The rest of the night has been calm, Ethan drank 2 drinks tonight and I gave him a water gravity feed through the tube. He should be getting a minimum of 40 ounces of fluids per day and he's only been getting 30 on a good day, so we have to fill in with tube feeds til he recovers his drinking.
Take care, I hope everyone stayed safe through the tornado warning in Cincy tonight. I kept an eye on your weather for you...! Miss you all!