Things are going OK. There is definitely residual pain, but the worst pain is what they experience during the infusion and he made it through that great. Since then he has been resting and every 2 1/2 to 3 hours he starts getting restless and grunting in his sleep again and is ready for more pain meds. So I can imagine how it might be if we only had outpatient meds. His breathing has remained fine ( we just have the oxygen blowing in his direction) and his heart rate has not yet been below the 140s, but it has been trending downward throughout the night; there was a time when it wasn't below the 160s so we are getting there. He did start to get hives and have a little swelling around 8 pm or so. Perfectly normal reaction. Overall we are doing really good. It still isn't easy, but it could have been worse. For now, Clayton and his roommate go back and forth grunting and moaning as they need more medicine, but these sweet little boys are doing so good. The things these kids can handle are amazing; they really are champions.
Keeping in mind I am trying to be respectful of our roommate, I will say he had a very different reaction. He experienced anaphylactic shock and they cut his treatment short. I won't go into detail other than to say that I think the team of nurses and doctors did an outstanding job of handling things. Everyone is trying to decide how they will move forward. Even though he too is on his first round of 3f8, that little boy has had a much longer go of it than Clayton (he was diagnosed in 2010) and I hope everyone is able to find the decision that is right for him. These kids need health and happinesses and peace in their lives.
Hoping the rest of the night continues to get more and more peaceful...
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