It's funny how one word can rule your life - right now it is Kawasaki... I am checking constantly for fevers, dealing with peeling lips, waiting for the peeling to start on the hands and feet, figuring out how to crush up baby aspirin and put it in liquid, dealing with spit up from the stomach pain and the aspirin, figuring out how to get some, any nutrition into my baby who doesn't want food... This is my life right now.
And I am tired, so very tired. I'm finding myself a bit discouraged right now. I think it is from being sick myself and being so exhausted. Apparently it happens sometimes when you are coming down off a long adrenaline high, which I definitely am.
I think really the baby is doing pretty well. He hasn't had a fever yet, a couple of close calls, but no fever. He doesn't fight me on his medicine. He is quite tired as well and a bit fussy because of it. I think he is actually very hungry. He hasn't eaten much since Wednesday. I am giving him Kid's Boost to get nutrients into him, and he is drinking milk of course. He has eaten a couple bananas and some grapes. So I saw that as a victory!
We have a follow up appointment with our family doctor on Thursday and then the visit with the rheumatologist early next Tuesday morning and then the echocardiogram and cardiologist visit afterwards. I'm thankful that we have somewhere like Nemours to take him to during this time. I am absolutely certain that they will take immensely good care of him and will tell us what to expect in the days ahead.
I have kept him home away from people since we got home from the hospital. We don't want to mask symptoms by adding another illness. I am a bit concerned because he is on the aspirin for him to get anything else because then he could get Reyes syndrome from the aspirin which could cause brain and liver damage.
It feels like a lot to worry about. I know that God is in control of our son. And I am thankful for that. I will be glad to know that our baby is healthy and that this is over. And I will be glad to feel caught up on sleep and well myself. I am currently a few days into antibiotics myself.
We still have another few weeks to wait until we find out his permanent status. I wish it was sooner, but I have trust God in all of that too.
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