For the few days that we have been home we have been giving lots of kisses and hugs and working to ensure Blake is comfortable. Although he has gained so much strength in such a short time and has worked up to walking to the mailbox and back, he still needs support moving around and getting on and off furniture. It is remarkable how much he gets better every day.
We were able to give him a bath and try to get off some of the many strips of sticky tape left on his sensitive skin. When we took his last large bandage off (from where his pic line was) he announced "I am not connected to anything else".
We have follow up appointments with his cardiologist and pediatrician early next week. We look forward to sharing how well Blake has done with the team that has taken such good care of him for 3+ years.
I feel a little like a pharmacist each morning and evening but once he is able to come off the Lasix and we aren't worried about his Potassium it will be much easier. He went into surgery on one medicine that we had hoped he would not come back on (it has long term side effects we don't want to expose Blake to) but unfortunately for now he is. Our goal is to work with the team here to get him off that medicine soon.
We feel blessed and overwhelmed with how smoothly Blake's surgery and recovery went. We now have to focus on getting his body well and helping him (and Aidan and Riley) recover emotionally and ensure he understands (as much as a 3 year old can) everything that he went through. Please pray that our happy boy continues with his Superman strength!
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