Ethan had a so-so breakfast feed this morning. My suspicion that his mouth is sore from all the nuk brush food reintroductions was confirmed again when the feeders had to call the nurse into the feeding room because they found blood specs on the nuk brush.
It was not a big deal, it is standard protocol to call the nurse if any blood is seen in the feeding room. Ethan recovered and also had an ok speech therapy session.
Lunch and dinner feeds were awesome!
Ethan had an awesome breakfast feed and we spent some time out in the therapy garden before the lunch feed. The plan was to introduce pureed chicken nuggets at lunch, but Ethan had a rough time transitioning into the feeding room (ie. had to be dragged in screaming) so they delayed chicken nugget introduction til dinner.
After lunch, Ethan and I headed over to a courtyard at the Johns Hopkins Medical School where the 81st annual Turtle Derby was being held. This is a fun event where sponsored turtles race and JHMS students perform between the races. There was a clown, some hip-hop dancing, singing, and a cookout. The fun event benefits the Child Life departments at JHH and KKI. We loved it, the weather was gorgeous and it was a lot of fun to watch the turtle derby.
When they have turtle races at SMOY fest in Cincinnati, the turtle run in lanes. Here they put all the turtles in a pen in the middle of a big bullseye. The starter raises the pen and the first turtle to run out of the target wins. It was neat to think we were able to be part of such an historic event.
I was worried about chicken nuggets because that was the only food introduced on our first KKI stay that Ethan completely rejected. My worries were unfounded-Ethan did AWESOME at dinner! He fought the chicken nuggets a little bit, but recovered nicely and swallowed the bites, yay!
As we were getting ready to leave KKI for the night, I noticed the skin around Ethan's g-tube was bright red. A nurse and a doctor were called and another g-tube infection was confirmed. This is his third infection at the site in the past 9 weeks. This is a very unusual occurrence so the doctor prescribed an antibiotic and said he wanted to look into this further on Monday.
We are on weekend feeds still so we spent the day at KKI today too. It's kind of lonely on the weekends. There are only a few inpatient feeding kids and Ethan is the only day treatment feeding kid who is on weekend feeds. We spent a lot of time alone in the playroom and Ethan got antsy.
A special thank you goes out to the security guard who got on the horn and had another guard unlock the 801 building to let us into the therapy garden to play. It was a gorgeous afternoon and Ethan had fun playing in the fountains and running around on the lawn! All three feeds were awesome today. Ethan does so well on the weekends!
His tubey infection looked a little worse on Saturday night, I can't wait to find out what is causing it to become infected.
The g-tube looks about the same as last night except that a skin tag looking thing appears to be growing right at the incision. All meals are going well and Ethan is taking the chicken nugget puree just fine. The skin tag looking thing turned into boils which started to seep by lunchtime. Yuck.
I took Ethan back to Ronald McDonald House to give him another antibiotic dose. What great timing! Volunteers were setting up an 'Everybody's Birthday Party' for the kids. Ethan was naughty, but was able to pull it together to play Pin the Nose on Ronald and he won a deck of crazy 8 cards. Fun!
We went back to KKI for the dinner feed and he did a great job! I think we've rounded a bend. He is no longer fighting food like he used to.
Ethan slept in a bit this morning and was very warm so I added Tylenol to his morning tubies. I think we had 9 syringes to administer today. Ethan does well with the tubey and syringes, but he's cranky this morning from the infection, and he's in protection mode. He's been walking around with one hand cupped over his tube site since Sunday afternoon.
Breakfast went well, no spits or spoon refusals! Speech Therapy was 50/50 today. Ethan did well with his oral exercises, he does two rounds of nuk brushing inside his cheeks, 50 chews on each side with the chewy tube and 10-20 seconds of tug-o-war on each side using a rectangle chewy held between his back teeth.
He did not do so well with the pretzels and Teddy Grahams. His ST wanted him to dip the teddy and pretzels in the peanut butter then kiss, lick and bite them. Ethan wanted nothing to do with this. He threw a teddy into the peanut butter and wouldn't touch the teddy or the pretzels to his mouth. He basically sat with a hand clamped over his mouth for the remainder of the ST session.
He also had School before lunch. His tutor reported that he worked on ABCs and Numbers with his speech device, but was distracted by the Weeble playhouse. He apparently thinks it's hilarious when the Weebles fall over. You know, Weebles wobble, but they don't fall down!
Broccoli and Cheese puree was introduced at lunch today. Ethan did awesome! Yeah! We now have 6 new pureed foods: creamed spinach, pizza, spaghetti & meatballs, chicken nuggets, carrots, and broccoli & cheese!
I met with the nurses and Dr. Levy about Ethan's tube infection today. We aren't happy with the speed with which the antibiotics are working so Ethan got a new prescription and some new skin cleanser. The thought is that there is an infection in a cavity under the skin that is not being wiped out by our previous antibiotics so the infection is reappearing every few weeks. We should expect to be on antibiotics for a while this time to wipe it out completely. The redness and swelling are down, but the place where the boils were looks very sore still and Ethan is still protecting the area.
Ethan started packing food again during his dinner feed. His cheeks got bigger and bigger until he spit the whole mess out. It took the feeder at least 5 large spoonfuls to get it all back into his mouth, but Ethan swallowed and continued with his feed. Whew!
We miss you all and will see you soon!