Three Little Birds

Story of 3 little birds and one who soared above us all.

week in review

rough weekend but Lydia remained stable with a full new course of antibiotics and being on the oscillator vent.

Monday: craptacular meeting with some doc that met Lydia for the first time and just started in July wanting all our thoughts about every life making decision about Lydia’s care. No straight answers were given and we asked that he step off her case and have one of our preferred CICU attendings (Satish) be in charge of Lydia’s care who has known her since she has been in the CICU.

Tuesday: hard good-bye for Clay from Boston but two very happy babies excited to see their Dada. Wyatt had been starting to constantly hit the computer asking for Dada as we’ve been trying to skype as much as possible and I think he was beginning to think Clay lived in the computer.

Wed: very small changes, our moods at home definitely reflect progress or lack thereof

Thurs:Nice roller coaster day starts with resident calling us that Lydia’s heart rate is lower than normal and her blood pressure is higher than normal and while her neuro exam is seemingly normal even though she remains paralyzed, it could be a sign of a brain bleed so they are going to do a head CT. Head CT then cancelled since they can’t do it at bedside with the oscillator as planned. Then Satish calls later to say she’s made a lot of progress this week in reduction of vent settings and they think the heart rate is more of a sedation issue and he is not concerned it is a brain bleed so CT will remain on hold. whew, that first call surely made a few gray hairs pop out

Friday: she has been back to the regular vent since 1:00 and so far so good as I cautiously exhale a very small sigh of relief. Still on pretty high pressure settings but making progress. We all feel this is likely an infectious issue but cultures remain negative and we’re not sure from what. My suspicions still lie on an esophagus leak or some problem from her last thoracotomy surgery but until we can do a CT next week, we’re all still guessing. We have infectious disease involved in her case and making sure every possible bug is covered.

We’re hoping for a calm weekend and to enjoy some family time with W&A before Clay will head back to Boston on Sunday.

Thanks for the continued love, support and prayers to get our girl back to KC.

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1 Comment

  1. Jerre & Ken Watkins

    Clay and Amanda, We have been out of touch, gone for a week, and in hospital with my mother who suffered a heart attack– but doing well currently. We will be moving her from independent living to assisted living in a couple of weeks– rather traumatic for her. Lots of issues and conerns since she is not eligible for surgery. We are experiencing some of your feeling of “walking on eggs”. We are glad to hear that Lydia’s condition is still holding. Also enjoyed your humorous account of home. Our love and prayers are with you all.

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