Ethan continued to be sick over night last night and was very limp looking in the morning. I called Mark to tell him I was taking Ethan over to the Emergency Room at Johns Hopkins just to make sure it wasn't a problem with his new tube or the new medications.
The JHH Children's ER moved into a gorgeous new building this week. It's funny, because they were constructing this new building when we were here 3 years ago. Even then, the exterior of the building looked essentially complete, I guess the interior and landscaping took that long to finish. This building looks like it is about the size of the entire Cincinnati Children's Hospital main campus. One of the moms here said it cost something like 3 billion dollars to build. That seems like an incredible amount, but the building is awesome.
We checked in and Ethan immediately had blood drawn, stomach x-rays taken and IV fluids started. The stomach x-rays looked good, so the problem wasn't his new tube. After his first bolus of fluids he had a urine test which showed he was dehydrated, so he got a second bolus of IV fluids. We had to wait a while for the IV fluids to work and for the blood results. The ER doc looked up the combination of meds and said they shouldn't have caused him to be sick. When the blood work finally came back the glucose was 35, which is extremely low. We gave Ethan some strawberry milk and Pedialyte and retested and his result was 65, so there may have been a problem with the original test. His bilirubins were high so those had to be retested too. We were at the ER all day, but it was actually a nice calm day. We sat and watched movies and Ethan perked up after all the fluids. It was so nice to just sit and relax and see him improve.
I kept an eye on Facebook a little more than usual too. My niece, Sarah, was married to Lamar today. Ethan and I were sad we couldn't make it back to Ohio for the wedding, but we really enjoyed seeing the pictures Aunt Shielah, Micah, and dad posted.
Ethan was scheduled to go to KKI on Saturday and Sunday for feeding therapy. We obviously missed Saturday, but since Ethan woke up Sunday morning and started jumping on the bed, I thought it would be good to get him back into the feeding routine. We got dressed and headed to KKI, but they had sent the feeders home when Ethan ended up in the ER, so no feeding sessions today.
This worked out extremely well. Ethan loves Thomas the Tank Engine. Actually, he completely is obsessed with Thomas the Tank Engine. We had reservations for 'A Day Out With Thomas' on Friday evening, but had to cancel because Ethan was sick. I looked online and saw that Thomas was still at the B&O Railroad Museum, a few miles away, so we headed over. I kept him in his stroller for most of the time, and we only spent about an hour there, but Ethan got to see Thomas, see Sir Topham Hatt, and got to pick out a train set. We spent the rest of the day hanging out in our room at RMH playing with the train set and just relaxing. Nice!
As expected, I had a hard time getting Ethan to eat much on Sunday so I had to give him more Pedialyte through his tube.
Ethan slept well last night and was easy to get ready this morning-until it was time to go, that is. He did NOT want to leave RMH-I made him. He did NOT want to get into the car - I made him. He did NOT want to get out of the car-I made him. He did NOT want to weigh in-I couldn't make him-he's way too floppy and wiggly to make him stay on the scale!
He had to be dragged into the breakfast feeding crying. He also cried and spit the majority of bites at breakfast: sweet potatoes, pizza puree, creamed spinach puree. He did great with vanilla yogurt, though.
This breakfast was the first time I felt like maybe I should just take Ethan back home and continue to spoon feed him his 10 pureed foods. Knowing how rough his weekend was, it was very, very hard to watch him fighting the breakfast food.
Our morning was busy. He had school, then Speech Therapy, a visit to the Therapy Garden with the playroom group, then it was time for lunch. He is slowly warming up.
He is refusing most foods in all therapies. Ethan is having such a rough day today that I promised I would take him out for spaghetti tonight. Spaghetti noodles are one of Ethan's favorite foods. No sauce, just tossed in a little olive oil. Spaghetti noodles are the only noodle Ethan will eat, he won't touch macaroni noodles, rotini, or any other noodle. Ethan was very excited to hear he would get spaghetti and kept nodding and saying 'Yes'.
He did a little better at lunch. The feeders halved his meals until he's back to his old self. This means he only has to take 24 bites instead of 48. He fussed and spit quite a bit of his lunch, but it was better, and less heartbreaking than breakfast.
Ethan didn't drink anything today so I gave him Pediasure and strawberry milk through his tube. Mark and I fought getting the tube for so long, but now that it is in it has been a godsend. It really takes a weight off my mind to know that I can give him fluids through the tube.
Ethan had OT this afternoon with a different therapist and I did not get feedback on his session. I wish OT had an observation room!
Dinner was another fight, so while he fought, I searched online for a family friendly restaurant in the Little Italy section of Baltimore. Amicci's came up as one of the best family friendly restaurants in the area. OK, we have a plan for some fun and relaxation tonight! Hoo Ha!
I gave Ethan another tube feed before we left for the restaurant and off we went. Little Italy is just a few miles away from KKI so it was a quick trip. Little Italy is fairly close to Fells Point and, like the rest of Baltimore City, it has a lot of rowhouses on narrow streets. Most of the parking is on-street, so we drove around the block and found a spot. This suburban mom really, really, really needs to learn how to parallel park!
Amicci's was clean and neat and we put in our now-standard order to pay up front and have to-go boxes delivered right away incase we had to make a quick getaway. The nice waitress confirmed they had spaghetti, confirmed they would toss it with just a little olive oil and brought me a Coors NA. Despite the no alcohol, I was glad to have my first 'beer' here. The service was quick and it seemed like only a few minutes before our food was served. The waitress delivered a steaming bowl of shrimp penne for me and a steaming bowl of-wth? Wide fettucini noodles? They were so wide they looked like egg noodles. Ethan started to whimper and sign spaghetti. I questioned why this wasn't spaghetti, and the waitress said 'Oh, we don't have spaghetti here.' WTH? I ordered spaghetti AND reconfirmed they had spaghetti. I had already paid for our dinner, so I said, 'Ethan, we will have to go somewhere else for spaghetti', and quickly scooped my meal into a doggie bag before the meltdown started. And start it did. Ethan didn't understand why he didn't get his spaghetti and started to scream. I made a quick getaway while dragging a screaming Ethan behind me. Dang, I should have ordered a real beer.
Ethan held tight to the railings on the front porch of Amicci's, but I was able to pry his fingers off the rail and get him to the car while he screamed the whole time. Fun- not. What the heck kind of Family Friendly Italian restaurant in Little Italy doesn't serve spaghetti? And why would the waitress say they have it, let me order it and then bring something totally different? We ended up going to the supermarket and buying spaghetti and making it back at the Ronald McDonald House. Bummer, but Ethan ate a big bowl, so the end result was good. My pasta was cold, but it was still tasty.
Feeds were a little bit better today. Ethan had OT and school while the moms attended parent training. The KKI pediatric feeding disorder program is extremely good and attracts families from all over the United States and world. Without divulging any private info, I can tell you that there are families from the Philippines, South Africa, Haiti (I think or perhaps Jamaica) as well as from Maryland. In the past 3 weeks, families from New Jersey, Upstate New York and Arizona graduated from the feeding program. So there is quite a bit of diversity here.
During today's parent training, which discussed Escape behaviors, one of the moms started talking about how tough it is to be a special needs mom because the parents of typical kids just don't get it. She's having trouble with a neighbor who keeps reporting them because her child is loud at night. Wow, within a couple of minutes we were all tearing up. No matter what our background, special needs moms can relate. It was a nice bonding session across cultures. Special needs parents are amazing.
Take care, we'll see you all when we get home!