Three Little Birds

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

updates

As always, Lydia keeps everyone on their toes and guessing. The weekend of Oct 2&3 was another rough weekend as she didn’t feel well and was fussy most days. We were worried she was going to have to go back on the vent. She ended up developing another abscess in her thoracotomy incision that had to be drained. After they drained it and started packing the wound she started feeling better again. Turns out she is growing pseudomonas in her wound which is a nasty little bug that likes to hang out in hospitals. She’s been on antibiotics, off them briefly and now back on again with a new drug regimen. Hopefully we’ll get this thing fought off once and for all and get her back to fighting shape for yet another surgery round.  This past weekend was much better for her and the nurses report she’s back to the smiling and happy girl we all love.

Last Tuesday she had a cardiac cath done so they could get a more detailed look at her anatomy and measure the pressures in her vessels. For now she is fairly evenly mixed with the right amount of blood going to her lungs and to her body. Her O2 sats are around 80 and she’s not becoming too blue. She has a slightly higher ratio of blood going to her lungs but not significant enough to do any intervention procedures at the moment. They do think she will likely need the bidirectional Glenn procedure done after her esophagus is connected since she’s had such trouble growing or gaining and probably would not be able to be big enough to wait for the Fontan procedure around age 2-3. They’ve cut down the amount of diuretics she’s getting and they’ve been able to wean the flow of her nasal cannula down a bit too so hopefully we’re heading in the right direction to get into better shape.

For more details on right hypoplastic heart see http://www.childrenshospital.org/az/Site508/mainpageS508P0.html

Still no word on when the next esophagus surgery will be. Dr. Jennings wants her to be infection free and doing better. Clay flies into Boston tomorrow and will be there through the weekend. Her other big event for the week is her move to the Pediatric ICU and out of the Neonatal ICU. Since she’s close to a year, they’re giving her the boot. I’m trying not to be too bummed about the move since we’ll have to leave all our nurses we’ve grown to love and have to make new friends again. I still wish our KC NICU nurses would consider a travel assignment in Boston since it’s still going to be awhile before she’s back in MO.

Here’s some Wyatt and Ava pics from the weekend. We went to Benedictine’s Homecoming in Atchison. It was a perfect October MO weekend and it was nice to have some time all together. We lit a candle for Lydia at Mary’s Grotto on the campus and ended up starting a fire in the container holding the lighting sticks. Good thing Clay was windy enough to blow it out and I had my water bottle for back-up. We’re not sure what kind of message to interpret from that one….

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1 Comment

  1. Shelley

    Hope that the transition to the PICU went well. Hopefully the PICU nurses will be as sweet as we were:)

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