Journal entry by Kelly Mccain —
As I write this I'm teary eyed in a good way, and holding Evelyn while she sleeps.
Well today Evelyn came home!!! Today we passed out cupcakes to all kiddos, and parents, as well as all staff on the floor in celebration of Evelyns birthday on Wednesday.
Being home is going to look a little different for awhile. She has 2 Broviac IV antibiotics. One takes a half hour to go through and the other takes an hour. We have to give these 3 times a day starting at 530 A.M. and last one at 9:30P.M. On top of that, she has her regular medications, and tube feedings every 3 hours during the day. We have weekly physical therapy and occupational therapy. She also has weekly infectious disease appt follow-ups. She has a surgical follow up, cardiologist appt, and a 2 year check up with vaccines. Once her IV antibiotics are done (in 4 weeks is the hopes) she will have to have a minor surgery to take out her Broviac.
Tonight consisted of writing a new medication schedule, playing with Evelyn, and ordering Taco Bell, because who has time to cook after an eventful day! We will be taking it hour by hour with our new schedule. Though it's very overwhelming, I wouldn't want it any other way. We have her home and are so grateful for that. From the bottom of our heart, we thank you all for the continued prayers, and well wishes. We still have a fight ahead of us, future surgeries, but are relieved to have her home in our arms.
Well today Evelyn came home!!! Today we passed out cupcakes to all kiddos, and parents, as well as all staff on the floor in celebration of Evelyns birthday on Wednesday.
Being home is going to look a little different for awhile. She has 2 Broviac IV antibiotics. One takes a half hour to go through and the other takes an hour. We have to give these 3 times a day starting at 530 A.M. and last one at 9:30P.M. On top of that, she has her regular medications, and tube feedings every 3 hours during the day. We have weekly physical therapy and occupational therapy. She also has weekly infectious disease appt follow-ups. She has a surgical follow up, cardiologist appt, and a 2 year check up with vaccines. Once her IV antibiotics are done (in 4 weeks is the hopes) she will have to have a minor surgery to take out her Broviac.
Tonight consisted of writing a new medication schedule, playing with Evelyn, and ordering Taco Bell, because who has time to cook after an eventful day! We will be taking it hour by hour with our new schedule. Though it's very overwhelming, I wouldn't want it any other way. We have her home and are so grateful for that. From the bottom of our heart, we thank you all for the continued prayers, and well wishes. We still have a fight ahead of us, future surgeries, but are relieved to have her home in our arms.
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