Day 13

 On Friday, we had a bit of a set back. Standing in his “room,” witnessing his vitals spiral downwards and not being able to do anything about it was almost as gut wrenching as the Wednesday that we were admitted. As his mom, not being able to do anything for him is a nightmare in itself. All of the staff were extremely reassuring in telling me that Carson was simply letting us know that he was not quite ready to do things on his own. As a result, he was put back up to the highest settings on the ECMO, stopped receiving breast milk, began the paralytic, epinephrine and cardiovascular meds again. All of this being in Carsons best interest. The plan is to very slowly progress this time around to ensure that we do not push his body over the edge. Hearing this was very devastating. All I kept thinking was, ‘I was that much further from being able to hold my baby.’ I have to constantly remind myself that Carson is in the best hands possible and is getting the appropriate care he needs. 

 Today, he seems to be showing small signs of improvement. While his chest X-ray still shows no signs of air in either lung, his numbers are slowly increasing. We began his feeds again, and have been able to come off of the epinephrine and paralytic. Again, we are moving much slower this time so there won’t be many updates over the next few days. 

 Since being admitted, the PICU staff has become our family and for that, I will be forever grateful. Each and every care team member that has come in contact with Carson has adopted him as their own and continue with every day that passes to demonstrate the love they have for these children. With that being said, please don’t stop the prayers. We are still in desperate need for any and all positive vibes 💙