A hematologist (blood doctor) consulted with Evie's main doctor to discuss whether steroids might be a safe to help out her lungs once she is off antibiotics. Steroids could also help reduce liver/spleen inflammation, but they can mask other infections and weaken her body's immune response. The docs won't make a decision until her lung infection has cleared.
Lastly, Evie's infectious disease doctor presented Evie's case at a weekly hospital conference. The goal was to get insight from the broad array of doctors in attendance. The doctors discussed another antiviral medication for Evie, but they decided the side effects on the skeleton are way to risky to try that medicine. Even though this conference didn't result in any epiphanies for Evie's treatment, I was thrilled that Evie's case is getting attention from so many good brains!
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| Holding Evie. . . trying to be patient. . . . |
Occupational Therapy
On Thursday I invited an occupational therapist to come help me work with Evie during her care time. It was amazing what we accomplished in just 15 minutes! Brenda showed me how to reposition Evie's hips so that she could practice kicking a little bit. She also showed me how to gently help Evie round her back a little. We used rolled blankets and swaddling to help Evie rest in good alignment too.
Evie got overwhelmed quickly, and brenda showed me how to read her cues. . . But before she got overwhelmed, she found her hand and watched it as it moved around near her face. She also followed me as I moved around her crib and spoke softly to her. She is more alert every day!
Wow you are an amazing mom!
ReplyDeleteSuch great moments (I remember being there so focused on my baby's levels of creatinine and sodium) holding my baby's first hat as he was whisked away to a Children's hospital!(trying to be patient was the hardest part) bringing our baby home weighing less than 5 lbs thinking back I even thought he looked good (to me he did) our baby is 23 now and I still marvel at what he's been through (9 surgeries in total) it wasn't easy but people like your mom who embraced Nathan for who he was made it all worth while. It hasn't been an easy road but to me he's one very special guy and baby Evie will bring so much richness to your lives I wish I could be there to hold her and tell you what amazing parents you both are (plus hugs for big sister Valerie) xxoo Carole
just loving her little hand poking out of the blanket!
ReplyDeleteIt's excruciating to wait. One of these days she'll start picking up the pace. Take care of yourself. Rest. Even give yourself permission to take a day off from the hospital without feeling guilty if you need it. What do you and your family need? How can people help?
ReplyDeleteThanks Rebekah and Carole! I have taken your advice and decided to rest more. . . I let myself sleep during the day and reached out to my parents to help me with cooking this week.
ReplyDeleteI think of you so often!
ReplyDeleteHow are you all doing how is baby Evie?
Carole