Saturday, September 25th, 2021
Today is Juju's birthday and Notre Dame football! 🥳🎈🎉 ☘️🏈👏!
Mom went to pick up James' antibiotic and refills at CVS. It turns out that several of his medications (like almost all of them) have some type of issue where they cannot be filled. A few examples are 1) His lansoprazole (Prevacid) needs to come from a compounding pharmacy which CVS is not. 2) His sodium chloride can only be picked up from a Hospital Pharmacy. 3) His calcium carbonate is only carried at select pharmacies. 4) His multivitamin, melatonin, and Mylicon (gas drops) can be purchased over the counter however the dosage and strength is different and would require James getting twice as much quantity and his belly. So we are trying to get these approved to go through insurance instead of out-of-pocket.
So not only do we have to contact four different doctors (pediatrician, pulmonology, gi, endocrinology) to refill James' 11 medications, we now have to go to four different pharmacies to pick them up (Publix Pharmacy at the hospital, local Publix near our home, local CVS near home, and the CVS that carries calcium near the hospital)! Not exaggerating.
In the evening we needed to give James some Tylenol due to him teething and not feeling well with his infection. We will find out on Monday what exactly came back in the sputum culture.
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| James laid down with Mom on the blow up air mattress. |
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| James loves his moonjax. #1 teething toy on Amazon. |
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| James taking a selfie 🤳 |
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| James passed out as soon as we finished Trach care. He didn't even make it to his bed. And the Tylenol helped. |
P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️
P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭
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