OCH: Week Three

WOW! Our third week at Our Children's House is over! We're in our final week!!! We have a Care Conference on Wednesday, August 29. They should give us our definite discharge date, but it should be Monday, September 3 unless something major happens. If anything, I'm hoping to get out a day or so early so we can have a few days at home to get settled. Crossing our fingers....

Monday, August 20, 2012 - I'm sitting in on all of Eli's feeds today, then I'll start feeding him tomorrow! Eli threw up again today after his 1:30 feeding. Just applesauce this time, no avocado. Adam surprised me by showing up a day early, so he was the one to get thrown up on this time! It was also great timing because he was able to help me and Eli get settled into our new room.

Tuesday, August 21, 2012 - We are all set for Eli's scope tomorrow. We have to be at Cook Children's in Ft. Worth at 6:00 AM!!!! It's going to be an early morning! I'm staying at Baylor Plaza Hotel tonight so hopefully I can get some rest. I also Skyped with Mom and Ryan a few days ago. Ryan told me about some dehydrated apple chips. I told Eli's SLP about them. She was able to buy some and introduced them today. Eli had a really hard time with them, but it's a start!

Wednesday, August 22, 2012 - We went to Cook Children's this morning for Eli's scope. The Eosinophilic Esophagitis is clear, but he has a yeast infection in his esophagus from the medication used to clear up the EE. So we're weaning off that medication and starting a new medication for the next 21 days to clear up the infection. Biopsies should be back in the next few days. Adam also got to feed Eli this afternoon and was very excited!! We talked to Christine with Dietary and Nutrition. Eli is getting about 800 calories during the day so they are cutting his nighttime tube feeds in half, stopping them after 5 hours and only doing 250 cc's. They think they will have him weaned from tube feeds before we leave OCH. Since this is Adam's last night in town, I'm staying at the hotel again and hoping to get LOTS of rest!

Thursday, August 23, 2012 - Adam has fed Eli ALL his feeds today! I'm so proud of how well Eli is doing and it has been such a huge help having Adam here the past few days. I was able to rest well the past 2 nights and am finally feeling better. I will start feeding Eli tomorrow. I'm anxious to also see if they've found any new foods for him.

Friday, August 24, 2012 - I got to feed Eli during his Feeding Therapy today for the first time! He's doing really well. I'm hoping they can find something for him to eat at breakfast other than just applesauce. During Speech Therapy today, Eli ate an apple chip! Dr. Oshutokun's office called today (the GI doctor from Cook Children's). They got the biopsies back and Eli's EE is RESOLVED!! However, there's significant erosion in his esophagus from the EE. So he's doubling the Prevacid dose. He also said that we can begin to re-introduce 1 new food every two weeks. He said to start with the lowest allergen reaction first. He also wants to re-scope in about 2 months. He's scheduled for an appointment on October 16 and scope and biopsies on October 17. Mom, Grandma and Pop came into town today for the weekend, I'm so excited to have them here.

Saturday, August 25, 2012 - Eli threw up during breakfast today. They are going to put him on Carafate to see if that will help.

Sunday, August 26, 2012 - Before Eli's last fe3ed today, he had a little breakdown. He started crying and said that he didn't want to go take his bites; he just wanted to go home. All I could do was hold him, cry with him and tell him that I wanted to go home too. I'm really frustrated that they haven't introduced any new foods in about 10+ days. This Momma's putting her foot down in the morning. We only have one week left and we need more progress!!

Things are starting to wrap up! I should be learning how to prepare food at the end of the week! So proud of Eli and the progress he has made! He is one tough, amazing little guy!! Please continue to send prayers our way as we go through our final week at Our Children's House and prepare to return home!!