Nebraska Medicine Evaluation for Second Listing

Hello everyone,

Sebastian, Rocky and Brittney had a great week in Omaha.

Sunday; left at 12 from Love Field, checked into hotel, took a nap,a large two story Library was across the street so he got books and a library card, ate dinner, bath, bed.

Monday- Lab work, chest x-ray, open MRI venous Doppler study (proved to be the most difficult because he had to lay still and it was a large, arm-like object slowly going over him), transplant coordinator and GI doctor evaluation. Nap, bath, dinner, bed.

Tuesday-Lab work, abdominal Doppler sonogram, echocardiogram, nutritionist consult, child life assessment, and educational child life assessment. Library visit, dinner, bath, bed.

Wednesday- Nebraska Medical was amazing and granted our request to NOT do a lower GI(last time this resulted in a ten day hospital stay) the team moved the other two appointments of the day to Thursday so we had a free day! Zoo from 9am-4pm : )

Rocky was able to arrive that evening for the remainder of Sebastian's evaluation and to be there to meet with the doctors

Thursday- Psychologist appointment, financial consult, social work consult, pharmacy consult, labs. Rocky took Sebastian to the Durham Museum, which was a formerly a train depot. Upon returning back to hotel, Rocky noticed a large outdoor amphitheater across the block filling with patrons to watch Jazz on the Green. After mom explored a few neighborhoods, she dropped off Sebastian’s meds and stayed to watch. Rocky’s room was facing the music so he just cracked open his window. FUN!

Friday- Upper GI, we anticipated this to be the most difficult but Sebastian surprised us both- he didn’t cry or freak out, he didn’t like drinking the contrast much but he rolled around and he finished in under 45min! So proud of him! Then, the final appointment was with Dr. Mercer, head of surgery. Rocky and Brittney are excited to be listed at this center. The formal listing will happen once all information is gathered and the proper PELD score can be listed.

Thank you all for the support, we will keep you updated as the listing is approved!


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