It's been a week since I updated the blog. Sorry about that, but we have been so busy!
All three meals today were awesome, Ethan was introduced to two new foods, Eggs & Cheese and Peas, and he did great! We are transitioning me into the feeder role. To do this, I need to be in the room observing for a few meals, so Ethan gets used to me there again, then I need to have a good grasp of the feeding protocol so I can start feeding him. I received the written protocol to study and had mock training in the afternoon where I got to use the protocol on a KKI feeder. All went well. I was in the feeding room as observer for the lunch and dinner meals.
Ethan started the day crabby and we couldn't get him on the scale for weigh
-in. He was so furious at the world that he had to be taken into an empty treatment room to scream it out. Ethan's feeder had to take him back to triage when Ethan regained control of himself and was able to get Ethan's weight before breakfast. It's funny how he is so stubborn for us and then will cooperate fully when a therapist steps in.
Ethan was introduced to another new food at breakfast, French Toast. He packed some bites and spit a bit, but recovered nicely. The foods with breading are a little tougher for Ethan because they thicken up and get lumpy quickly. Ethan does not like lumps in his food! I observed the breakfast meal in the room with the feeding team.
Then I met with Dr. Gulotta, Ethan's case manager. We are getting down to the wire and need to discuss what the rest of the stay will look like. We'll get a discharge date this Friday. Our discharge date should move forward from June 11 because we are on 7 day feeds instead of 5 days. I mentioned that we are going to work with a doctor in Cincinnati who was trained at KKI. Dr. Gulotta actually knows her and will call her about Ethan's case. Cool!
Dr. G wants Ethan to work on behaviors in the following order:
I was surprised by this list since we've been working on feeding for over 9 years now and as a top priority for about 6 years, since Ethan's airway was fixed. The logic in this order seems to be that Ethan is getting to the point in his life where he needs to be more self sufficient. If he is finally potty trained and can communicate, he will feel more in control and will fight less on all tasks, not just on feeding. OK, that makes sense. As a bonus, our life will be easier if Ethan is independently potty trained too.
I questioned the relatively low priority of self feeding since that was one of our goals when we came to the feeding program and we haven't addressed that goal yet. We are all very nervous about making drastic changes to the protocol because it is working so well now. Dr. G will think about how he can incorporate that goal without rocking the boat too drastically.
Lunch and Dinner feeds went well and I fed him in both meals. I was very nervous in the feeding chair, but Ethan did awesome and it turned out to be very easy to feed him. This new feeding protocol rocks!
At bedtime, I noticed Ethan's g-tube looked very sore. It wasn't swollen, but it was very red and looked like an open wound around the g-tube.
Tubey was very crusty this morning with bright red blood colored crusts. I cleaned it up thoroughly with the Hibacleans wash and Nurse Lynn took a culture to try to figure out what the infection is.
Ethan did awesome at breakfast and I was the feeder. I should remain the feeder until Mark gets here and has his training.
We started Ethan's self feed at lunch. I offered him one spoon of a preferred food. The spoon was placed on a plate in front of him and we repeated this for 5 bites then I fed him the remainder of the foods. Ethan did OK, but wasn't too keen on this change in protocol.
Ethan had school and Speech today. He ate 3 shapes of pretzels in ST, made popcorn and kissed, licked, and put popcorn in his mouth, but did not swallow. The Speech Therapist informed me that we will have parent ST training next week in preparation for discharge. She also wants us to focus on involving Ethan in food preparation because she thinks that will help Ethan accept foods more easily.
At dinner, we changed up the protocol for introducing self-feed. This time I fed him his foods then presented him with a bowl with 1oz of a preferred food and he had to spoon feed himself, no matter how many bites it takes. This worked out well.
Tubey looked pretty good this morning with hardly any drainage.
At breakfast, we did the same protocol as dinner last night. This time, Ethan threw the bowl of self-feed bowl and fussed. We gave him a replacement bowl and he was able to successfully complete the meal.
Ethan had to be dragged into school today so Ms. Rachel only got about 10 minutes of good school work time today. He also had to be dragged into the potty, so it looks like someone is cranky today.
Nurse Mindy checked Ethan's tubey and it looks pretty good. A small granuloma has developed at the 9:00 position of the tube site. We will have to keep an eye on this, if it gets too big it could impact the tube and will need steroids at that time-hopefully not, though. We can't give steroids now because they will interfere with his antibiotics and we HAVE to get rid of this dang infection.
Ethan did great at lunch and dinner feeds!
We are still on 7 day feedings so we were at the hospital again this weekend. Ethan did great on all feeds. Yeah! He is doing so much better this time in the program!
Dad is on his way to Baltimore via Altoona and Philly. He stopped in Altoona to allow Grandma Ray a visit with her cousin who was admitted permanently to a nursing home last weekend. We also found out that her cousin's husband, who had been nursing her full-time for the past few years, had a massive stroke on Thursday and was sent to Pittsburgh and is in the ICU. Please pray for their family. They only have one son and he has to be under extreme stress to have both his parents in rough shape and at facilities in two different cities.
Ethan's feeding issues seem trite compared to other's struggles. My brother had surgery on Friday, my nephew is having surgery next week and several of my friends have family members with serious medical issues right now. Wow, this has been a rough week for many.
Breakfast went great and Dad arrived right before lunch. Ethan was so funny. I talked to Mark when he was a couple of minutes away. I said 'Ethan, Dad will be here in a few minutes!'. Ethan ran over, sat in my lap and pretended to be asleep. Every few seconds he would peek at the door then close his eyes again until Mark arrived. It was so cute. He was excited to see Daddy!
Lunch went great and we received a call from Uncle Jim to say he had Orioles tickets for us. He reserved a parking spot up front and we ran to the game between the lunch and dinner feeds. It was hot and fun, thanks Uncle Jim!
Dinner went great too, Ethan is doing soooo well!
We went back to Fells Point in the evening and showed Dad our old apartment, walked on the waterfront, went to Bond Street Social for a tapas dinner, took Ethan to Thames Street Park for old times sake, and capped the evening off with a trip to Rita's for some frozen custard. Yum!
We also went out to fill the car with gas. While we were waiting at a light, a young man raced by on a dirt bike. He was flying up the street (in the inner city, pothole infested streets, mind you) doing a wheelie. He was doing a wheelie for blocks on end-it was gravity-defying crazy. I said to Mark "It's funny, I usually see about a dozen dirt bike riders together. They are scary because they run through red lights, drive between cars in the lanes and weave in and out of traffic at high speeds. I've seen them several times since we've been here." As if on cue, the rest of the gang drove by. It will be amazing if any of them reach their next birthday. No helmets, no concern for safety-Yikes.
The dirt bike riders can't hold a candle to the pedestrians here, though. The Baltimore City pedestrians, and it's a large percentage of pedestrians, not just a select few, have no use for cross walks, traffic lights or even sidewalks for that matter. I've had people walk in front of my car as I'm racing down a 6 lane road, walk out from behind cars as I'm driving down the street, cross in front of me even though my light is green, it's nuts. And it happens many times a day, not just once. My commute is only 2.5 miles each way and it happens several times per day, so you can imagine the scope of the issue. People in motorized wheelchairs even roll right out in front of cars! Baltimore pedestrians are completely wacked.
Some of the feeding moms and I were exchanging notes on the subject of local pedestrians one day recently. We all noticed the same thing and left the conversation shaking our heads in disbelief. That night, I was reading the local newspaper in the RMH living room and there was an article about the pedestrian problem. Apparently something like 30% of traffic accidents in Baltimore City involve pedestrians. Thirty percent seems low compared to what I see on my commute!
It's Memorial Day in the hospital! All three of Ethan's meals went great. Mark had his first mock feeding training, and we spent a ton of time walking around the Johns Hopkins Medical Center showing dad our favorite haunts, checking out the great artwork in the new Children's Center, and comparing all the changes since the last time he was here. KKI hosted a Memorial Day grill-out on the patio at the Johns Hopkins Medical School building, so we even had our Memorial Day party!
Ethan will be discharged on June 4th so we have less than one week left in the program! All our weekend days bought us a discharge a week earlier than planned, yay!
Nurse Lynn gave us the results of Ethan's g-tube culture. He tested positive for miscellaneous respiratory infection. This doesn't make sense so the test probably picked up some germs from his skin rather than from the g-tube drainage. Weird, because he doesn't even have a cold. Back to square one on answers to the repeated g-tube infections. We are concerned about the infections because it is very rare to have even one g-tube infection and Ethan has had three infections in nine weeks.
Ethan had a rough start today when he melted down in the playroom and had to be dragged into the feeding room for breakfast. Not a stellar start, but he recovered well. It shows the protocol is working when he can come into the room in a crabby mood and still have a great feed.
Mark was supposed to have a second mock feeding training this morning, but Ethan had a clinic appointment with the Down Syndrome specialist. Ethan will have to increase one of his new meds and Dr. Capone gave us some good information on Ethan's next steps. We also agreed to have Ethan's data included in Dr. Capone's research.
One cool thing about this appointment was that we were allowed to play in the playroom with Mr. Kris. Mr. Kris is a fun playroom supervisor who we went to see nearly everyday last time Ethan was in the feeding program. The rules changed and now Mr. Kris' playroom is only for kids with clinic appointments so we haven't seen much of Mr. Kris this visit. (Shannon, if you read this, they redid the 801 playroom already. The playroom bathroom is now Miss Cindy's office and there is a glass door between the playroom and the wii room. It totally changes the look of the play area, but makes it more functional for the staff.)
Lunch and dinner feeds went great too. Dad was the feeder and he did an awesome job!
Thanks friends, see you all in about a week!