Journal entry by Courtney Revering —
Wow, I cant believe its been almost two month since I last posted about our sweet girl, sorry about that.
Well, looking back at the last post we are now in a way better spot. She is able to stay awake more and interact. She likes to talk with her eyebrows when your talking with her; which is adorable. She has also been able to smile a little which is great to see! Working hard at her occupational therapy.
She did have some small set backs with a blood infection and pneumonia, but this time we found the bacteria that wasnt making her feel so well. The antibiotics work well and had her feeling like herself in about week.
Update on all the things she has been working hard on the last couple of months...
1. Ventilator... We are currently are doing well. The pulmonary team thinks we can transition to the home vent called "the trilogy" by early as next week; which is huge for Addi. Then she will be able to get comfortable with the home vent settings.
2. Sedation... Its a slow and steady process. We are currently still on 3 different pain medications, dilaudid, percedex and versed. All in due time she won't need them anymore.
3.Feedings.... We are up to 34ml/hr continuously through her NJ. Goal is to get the continous feeds to 36 or 37ml/hr depending on her weight. Surgery talked about switching her feeds to NG it would be going to her stomach instead of her large intestine. We first need to know if she can handle it in her stomach. The team has clamped the NG previously and it was to gravity. As of right now she is doing ok with it being clamped. She has been vomiting a minimal amount; not concerning to the doctors.
Most recent update as of today 7/27, she was started on antibiotics again for a postive trach culture. Addi needed increased oxygen and yellow secretions were noticed in her trach over the weekend.
Thank you again for the continued love and support.
Love,
The Revering's
Well, looking back at the last post we are now in a way better spot. She is able to stay awake more and interact. She likes to talk with her eyebrows when your talking with her; which is adorable. She has also been able to smile a little which is great to see! Working hard at her occupational therapy.
She did have some small set backs with a blood infection and pneumonia, but this time we found the bacteria that wasnt making her feel so well. The antibiotics work well and had her feeling like herself in about week.
Update on all the things she has been working hard on the last couple of months...
1. Ventilator... We are currently are doing well. The pulmonary team thinks we can transition to the home vent called "the trilogy" by early as next week; which is huge for Addi. Then she will be able to get comfortable with the home vent settings.
2. Sedation... Its a slow and steady process. We are currently still on 3 different pain medications, dilaudid, percedex and versed. All in due time she won't need them anymore.
3.Feedings.... We are up to 34ml/hr continuously through her NJ. Goal is to get the continous feeds to 36 or 37ml/hr depending on her weight. Surgery talked about switching her feeds to NG it would be going to her stomach instead of her large intestine. We first need to know if she can handle it in her stomach. The team has clamped the NG previously and it was to gravity. As of right now she is doing ok with it being clamped. She has been vomiting a minimal amount; not concerning to the doctors.
Most recent update as of today 7/27, she was started on antibiotics again for a postive trach culture. Addi needed increased oxygen and yellow secretions were noticed in her trach over the weekend.
Thank you again for the continued love and support.
Love,
The Revering's
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