Ethan and I are completing our second week in the intensive feeding program at the Kennedy Krieger Institute (KKI) in Baltimore, MD. KKI is part of the Johns Hopkins Medical Center (JHH) and our building is right next door to the iconic JHH building whose dome is used as part of the JHH logo.
Kennedy Krieger is a hospital for special needs kids. Our KKI building houses intensive behavior therapy for kids with severe feeding disorders-like Ethan, an intensive behavior therapy program for autistic kids, and a spinal cord injury rehabilitation center. KKI, like JHH, is growing like crazy. In the four years Ethan has been followed by KKI, they have built 2 new buildings in this complex and are in the process of building a third.
Ethan has a severe feeding disorder. He also has a significant medical history with airway reconstruction taking up most of his first three years. When his airway was corrected we found he would no longer accept foods. He went through several years of feeding therapy and was finally admitted to KKI in 2009. At that time, he was down to one food and one drink. He left the program with 8 new pureed foods and a recommendation that he have surgery to reimplant an artery which was wrapped around his esophagus. Within two years of the heart surgery, Ethan has doubled his weight, but will not accept any new foods. We came to KKI this time to expand his menu and to get him to feed himself.
There are lots of people in wheelchairs who come and go in the KKI and JHH buildings. This scenario was highlighted today when we had an all building fire drill. If there is ever a fire here, I hope it is small, smokeless, and quickly contained. We had to walk down the steps with the kids in the feeding program. Small kids do steps fairly slowly. Then the kids with ventilators and suction have to be transferred into stair chairs. Stair chairs are wheelchairs with caterpillar tracks that run up the back. A helper holds onto the front and another onto the back of the chair and the chair goes down the steps at an angle, riding smoothly on the caterpillar tracks. All the kids were calm and did a great job with the evacuation. It was quite the production with the strobe lights and intercom voice, but no one panicked.
The following are highlights from previous days in the program. Ethan is slowly calming down and is only partially fighting the feeder on his preferred foods. We are scheduled to start new foods on Monday-that's when the real fun will begin.
Ethan and I drove to Baltimore on Sunday, April 15th. Thankfully, Ethan is a calm car rider. We met Mark, Emma, Evan and Ray in Pennsylvania for lunch on the way. It was good for the kids to see each other.
Ethan and I rented an apartment in Fells Point, a nice historic district in Baltimore, while we waited for a spot in Ronald McDonald House. The rental was great. It was nice and clean, had secure, off street parking, was only a block or so from the waterfront, a park, and the main square. We spent a nice first week there, going to the hospital during the day and taking long walks and playing in Thames Street park in the evening.
On the Friday before we left, Friday the 13th, Ethan had his PEG replaced with a gtube. The site looked great until Sunday night. I crossed my fingers because I had seen his gtube site look red and sore before. By Monday morning, and our first check in at Kennedy Krieger, Ethan's tube site was inflamed and he was walking like a little old man. The dreaded Cellulitis was back.
Our schedule at Kennedy Krieger is pretty full. We check into the triage station first thing every day to have vitals checked. They monitor weight very closely here and check to make sure each child is well before they start their day.
Because Ethan's tube was so inflamed, we had to get an antibiotic. Ethan was also dehydrated because his feeding was off since the new tube was installed so I had to give his a rare gravity feed through the new tube.
We had to report all current health info to multiple staff members, do a quick tour, and get our schedule for the day. We also met with the nutritionist, the social worker, and had two scheduled feeds the first day.
Ethan remembers Kennedy Krieger from his last stay so he was NOT Happy to be here. He frequently dropped to the floor, refused to walk, and told me to 'Get out' and 'Go away'.
Our first feed in the feeding room was lunch. He took zero bites, even though the food presented was his normal food. He was mad and threw the tray off the table, fought every attempted bite, screamed and fought to get control of the dvd player. Same thing at dinner. I was the feeder at these meals so KKI staff could get a good idea of his feeding style.
My phone died during the day so Ethan and I spent the evening at an AT&T Wireless store in Nottingham, MD, a Baltimore suburb. We received great service from Charles. He set me up with a new phone and spent three hours loading all my contacts and pictures from my old phone. He even spent an hour after the store closed so he could finish loading my data. I've never received that kind of service in Cincinnati, but then I've never walked into the AT&T Wireless store in Cincinnati sobbing.
On Tuesday, Ethan's tube was even more inflamed. He had a goose egg growing under the tube's entry site. Triage nurses wanted him to see another doctor. While we were waiting between appointments, Ethan was playing quietly on the floor when he looked up at me with a strange expression and he pointed to his tube. When I looked at his tube, there was a half inch wide trail of bright, bright red blood coming from his site and flowing down onto his pants. My first thought was 'Oh no, his tube fell out. Why didn't anyone tell me it bleeds when the tube comes out?'. On closer inspection, the tube was still in, but I couldn't figure out why it was bleeding. One of the nurses helped clean up the blood and made an appointment to see a GI doc in clinic. There was some discussion of the blood being due to cellulits, a possible pull on the tube, or Ethan's skin was having a reaction to the plastic in the gtube. Plans were made to replace the gtube, but we have to wait til the infection goes away. We received two more prescriptions, one to combat the possible allergic reaction to the tube and the other to combat possible additional infection from the anti allergy lotion.
Ethan is still able to eat when we leave KKI at night so Ethan ate like a piggy when we got back to the apartment. We walked around Fells Point. It is a beautiful neighborhood and the weather was awesome!
We heard from Ronald McDonald House today. We get to move in on Saturday!
Ethan's tube looked scary horrible on Tuesday night. It was oozing pus and blood all day and he couldn't stand to have it touched. Every time I had to administer the antibiotic via tube or apply the lotion was a screamfest. I thought we would end up in urgent care in the middle of the night.
The tube looked much better in the morning! Whew! I'm not sure whether the anti allergy or the antibiotics were doing the trick, but I'm glad his infection is improving.
Ethan refused all bites from the feeder at breakfast and lunch.
Ethan was sent to see another doctor about his tube. It is not quite as sore, but tissue is coming up out of the gtube site. We discussed swapping out the tube in a few days. The big question is whether Ethan needs to be sedated for the procedure. We decided we will try to do it in office when the time comes and if we have no luck to then we'll try sedation.
Ethan was also referred for a consult with a KKI Down Syndrome specialist to review Ethan's meds to see if there is something else we can try to improve behavior and feeding.
I had to give Ethan another gravity feed today. He knows he can push out his stomach and stuff will come out, into the tube and up into the syringe. He loves this new game. Me, not so much.
The feeder changed the protocol to give Ethan only empty spoons at dinner. She wanted to see if Ethan understood what he was supposed to do. He did, Ethan ate every empty bite.
Ethan ate like a pig again at the apartment, but threw it up right away. lovely.
Breakfast was an 'empty spoon' meal. Ethan took all empty bites. At lunch, Ethan was allowed to make choices about what to eat. He chose nothing.
Ethan had OT and Speech therapy today. I only observe these sessions on occasion.
I had a meeting with Dr. Gulotta, the head of the feeding program/Ethan's case manager and Jennie, Ethan's main feeder. We swapped ideas about how to get Ethan more comfortable/compliant in the feeding room. I suggested we use a choice board with pictures. We've had good success using a choice board and picture schedule in previous therapies so Ethan is very familiar with the concept. We also discussed the fact that Ethan is a tough cookie who has had 9 years of experience in rejecting food and not much experience in relinquishing control. So...I need to be prepared for slow progress.
The feeders employed the choice board at dinner and it went well. Ethan actually took 3 bites of his preferred foods at this meal.
The feeders used the choice board at all meals. The first round is where Ethan eats 10 bites from an empty spoon. He took most of these with no trouble. The second round is where three of Ethan's preferred foods are on the board, he chooses the food, then has to take a bite. He chose crackers, and took 2 bites, then he chose pudding and took a bite. He would not choose the sweet potatoes or take a bite.
We went to Privateer Day in Fells Point. This appears to be a festival dedicated to adults dressing up like pirates and drinking mass quantities of alcohol. We only stayed for the kiddie part of the day.
We moved to Ronald McDonald House in the afternoon. We will miss Fells Point, but it will be nice to be more settled. RMH is very nice, and there are 4 of us who were also at RMH last time we stayed for 2 months. It's kind of like a small family reunion.
One thing about Fells Point is that everyone jogs here. Everyone. We probably saw 30 runners in the first block of walking. Ethan obviously thinks this is cool because he now wants to run everywhere. 'Won, Won', he says and runs. Fast. I'm having a hard time keeping up with him. This new jogging phase could be a problem!
We ran errands, hung out at RMH, and I filled out a zillion pages of paperwork for tomorrow's appointment with Dr. George Capone, a Down Syndrome specialist at KKI. Ethan ate like a champ all weekend. KKI feeders made us enough of his preferred pureed food for the weekend so it was very easy for me. Yay!
Ethan was in a bad mood at breakfast. He took all empty bites, but no real food.
He had a good session in speech therapy and actually drank water from a cutout cup and only coughed up once. It was great to see. He had a meltdown when the ST put veggie puff crumbs in his mouth, tho.
Our big event of the day was a two hour appointment with the KKI Down Syndrome specialist. He reviewed Ethan's history and targeted an evaluation of Ethan's current medication list and a review to see if Ethan is on the autism spectrum.
Ethan has very limited communication and lots of physical quirks that look like autism so there has always been a question in the back of my mind on whether autism is part of the Ethan equation. Dr. Capone pulls information from multiple areas to try to find places of improvement. He is going to request records from Cincinnati Children's Hospital so he can looks for links in Ethan's Down Syndrome, Sleep Patterns, Behavior and Eating. He's trying to see the big picture of Ethan.
Ethan was given a prescription for Resperidon, a drug that should help Ethan focus and hopefully eliminate some of the hand flapping, inappropriate vocalizations and inward focus. It may also increase Ethan's appetite, a bonus for the feeding program.
Ethan had OT, Behavior Therapy (I usually forget to mention this, but he has this twice a day in the playroom) and he ate his bites at lunch and dinner.
Our day started out rough. Ethan escaped from our room at 6:30am while I was in the bathroom. I found him playing at the train table two floors down and I received my first ding from the RMH mom for not attending to my child...and for not having shoes on as I ran down the steps.
Ethan is not too happy about being back in the feeding program. This comes out in behaviors. After being dragged back to our room, he fought me getting dressed, he went all limp at triage and refused to stand up so he had to weigh in by sitting on the scale. My favorite behavior today has to be the snot blowing. Ethan comes up to me like he needs a hug, I hug him and he blows a snotfest into my neck or on my shirt. Oh yeah, fun times!
At breakfast he fake cried, continued to act limp, but warmed up and took most of his empty bites. He spit the real food. Ethan loves Thomas the Tank Engine dvds so his reward is watching a dvd. When he spits or refuses a bite he loses his reward. The feeder turned the player off and darned if the little booger didn't reach around the feeder and turn the dvd back on while she was attempting to feed him the next bite. They now employ a 'blocker' in the feeding room to keep his arms in check.
At lunch he fought the empty bites so the feeder then used a nuk brush in the side of his mouth in lieu of the spoon. Ethan hates this. The feeder upped the number of real food bites to 12 and he did ok with the real food at lunch.
I had to drag Ethan kicking and screaming into OT. (Is this day over yet?) The OT reported that he calmed down and did 'ok' in the session.
Ethan must have been tired at the dinner feed. He appeared to be limp and bored, but was fairly compliant. He took all 10 empty bites and 12 bites of real food. Real food is still his preferred food, pudding, vanilla yogurt and sweet potatoes. No new foods yet.
Ethan woke up at 5am (yawn). Gotta love the east coast early sunrise. He fought tooth and nail getting in the car because he didn't want to go to KKI. His fighting must've worn him out because he fell asleep on the drive to KKI.
He had to be dragged into the feeding room for breakfast. He went limp and refused to walk so they maneuvered him under the armpits and half carried half dragged him into the room. He took all 10 empty spoons and ate 4 bites of pudding, but it was a no go on the sweet potatoes and yogurt. Spit, Spit, Spit.
He took everything at lunch, and we spent at least an hour outside in the therapy garden. It was gorgeous outside so we watched the cranes at the building site next door and walked in the labyrinth.
He ate everything at dinner too, even when they upped the bites of his real food to 18 bites. Dr. Gulotta observed this feed and told me the plan is to continue to up the bites of real food through this week and we'll start of new foods next week.