Elise with dad today.
So I have learned that this is going to be up and down. Yesterday more pissed me off than anything, and I didn't know who or what to be pissed at for doing this to my daughter. I'm learning to deal with her oxygen saturation dropping as her sedation is being weaned. She'll occassionally wake up and get agitated and try to cry (can't make sounds with an ET tube in) while lowering her oxygen saturation. There was some net improvement today. She began the weaning of her inhaled Flolan, and it will be completely removed by tomorrow morning, all going well. She had another ultrasound of her kidneys and adrenals that showed the adrenal hemorrhage and hydonephrosis has resolved. This means her adrenal function and release of hormones should support weaning of hydrocortisone, a process that will take six days. It also means that she is urinating normally and no urine is backing up into the kidneys. Her sedation was further weaned today, versed from 0.4 to 0.3. Tomorrow, fentanyl will be taken down a notch if tolerated. She required Lasix again today to further diurese her to improve her pulmonary edema. The more fluid we can get off her lungs, the better we can improve her lung compliance. She is tolerated higher rates of breast milk, now receiving 8 cc/hr. This will allow her TPN and intralipid to be reduced. She has gone everywhere from 40-100% on her oxygen delivered by the ventilator. She was able to tolerate a little occupational therapy, where they stretched and massaged her. She seemed to enjoy it as her back and bottom get sore from laying down. I've tried to use some of my osteopathic training to gently make her more comfortable as well. We'll just see what side of the wave we fall on tomorrow! Love you all,
Jason
2 comments:
Hello Jason,
Thanks for the report. This is a little more pediatric rotation than you probably expected.
I have an hour of prayer tonight from 0300 tom 0400, and will have Elise as my principal intention for that time. I think a lot of us are wearing our Rosaries out. I am sure your father and other family are doing the equivalent.
We love you. Uncle Frank & Kris
Hang in there. The ups and downs have to be tough. Looking at the big picture, it seems that she is making progress .... although sometimes it's two steps forward and one step back. But that's still progress! Please know that we are thinking about you all the time. Elise is so lucky to have such wonderful parents who care so deeply for her.
Love,
Auntie Christy (and Shad and Connor too!)
P.S. I think at least one of my previous posts never made it to this blog so I'll repeat part of it.... Connor has been asking "Where Baby Eweese at?" He can't wait to meet his new baby cousin!
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