We have had a change in plans, unfortunately. Raul was admitted to the BMT unit Wednesday due to a high fever. It was 103.3 when he woke up, and when we got
to the unit it was 103.8 even though I had given him motrin earlier. He
is not happy to be in the hospital, but felt pretty crummy the first day so spent most of the day napping. He was not able to get his central line Wednesday due to the fever, and they wanted him to wait 48 hours from his last fever, but today (Friday) he will be getting either a PICC of his Hickman line as peripheral IVs are just not holding up (he went through 3 in under 24 hours). He only had one fever yesterday, and it was after his bandage change, so it was most likely related to that.
We may switch to a GJ tube when he goes back to the OR next time to help with his nausea and gagging. While here we decreased his formula a lot, so the gagging has improved. Raul has also been drinking a lot by mouth, including powerade and strawberry milk (and even eating some yogurt again, though that has been making him spit up more). We have gotten to meet several other EB moms, which has been nice!
We may switch to a GJ tube when he goes back to the OR next time to help with his nausea and gagging. While here we decreased his formula a lot, so the gagging has improved. Raul has also been drinking a lot by mouth, including powerade and strawberry milk (and even eating some yogurt again, though that has been making him spit up more). We have gotten to meet several other EB moms, which has been nice!
Sending hugs to the handsome guy who makes me smile! You are always in my prayers! <3
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