Gavin is doing much better compared to last week post extubation. His o2 stats are great with 2 L of oxygen assistance which is very little, but his seizure episodes have been more apparent and he continues to be very agitated. He is currently on methadone and Ativan to help with the withdrawal spells and to slowly wean off from sedation. It is very tough being in the PICU, let alone being far away from home, but the medical team here @ Children’s has been amazing. Last night, our good friends, Joan and Wela picked us up from the hospital to have dinner @ their home in Virginia which was indeed a great break from the hospital environment. Gavin still had a 1:1 nurse so we knew he would be fine as we stepped away for a little bit. We will find out more today as to how much longer we will be here. If Gavin will be medically transported, he will have to go straight to the hospital upon arriving back to San Diego until it is completely safe to discharge him and bring him home. Although, Gavin did not finish the TSD natural history study with the NIH which we had originally traveled here for, the NIH team has collected enough data for now and will use what they have. I’m sure this unexpected trip to the PICU will be of useful info for their studies and if Gavin’s condition is great, we may come back to the NIH in the fall or spring to continue the studies. For now, we just need to focus on getting home. Thank you so much for taking the time to read Gavin’s updates and following his progress. Thank you for all your prayers for Gavin and praise God for leading the way. I’ll be posting more updates later this afternoon. Take care and thank you again!!!

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