Tuesday, June 18, 2013
tuesday 6/18/2013
No changes. It was decided not to do the thoracentesis. As long as Ava's CRP lab value (which is an indication of inflammation) keeps decreasing, Nothing will be done about the pocket of fluid at the base of the right lung lobe. The pocket could be fluid or infection or a hematoma (blood collection). It is a direct result of the perforation last Thursday. If for some reason the CRP lab value increases, they may consider making an incision and extracting the infection. The esophagram/swallow study is scheduled for Thursday. It no contrast dye leaks out, then the leak is considered healed and she can have the painful chest tube removed and restart her feedings through the NG tube AND be allowed to have her pacifier back..which she really wants! Her vancomycin and Gentamycin antibiotic doses were both increased significantly to reach therapeutic levels today, so i am hoping to see more marked improvement by tomorrow and the next day. Her little feet are SO bruised from all the blood they've taken in the last few days. She just tucks her legs up as high as she can. I'm still not allowed to hold her which I might fight harder here soon if she shows improvement tomorrow. She is getting morphine every 3 hours and versed as needed which is very frequent.
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Hi Amber, Shaun, and family,
ReplyDeleteI just wanted to say I started following your story recently after a friend (Belladonia Mortensen, not sure if you know her) posted about it on fb. I was drawn to your story because we also had a baby born last year with a syndrome, and had to spend almost 3 months with her in the hospital. We live in Eagle, ID and she was at Seattle Children's all that time, from day 1. So, when I read your stuff, I can certainly relate to a lot of the terminology, especially anything related to oxygen/breathing/ventilator. Of course during our time in the NICU we met many other families going through similar things, and I learned even more about all kinds of medical procedures I never thought I'd have to learn about.
Anyway, i don't want to make this about us, at all...you are now in the most epic journey of your life. But, it is our shared experiences that draw us together. Our girl has/had a heart defect called obstructed TAPVR, where her pulmonary veins were not connected to her heart. We birthed her at home and had no idea she had any problems. She was not expected to survive, but she did, and she is now a happy, relatively healthy 14 month old. Her syndrome is called 22q Deletion, or DiGeorge, among other names. She also has inner and outer ear defects, hearing loss, immunodeficiency, a g-tube, and she had a stroke at 12 days old, so some muscle tone loss on one side as well.
During our time in the hospital, I did appreciate (most of the time, and depending on the day, and what they said!) hearing from other folks who'd been through something similar. I feel for you as you navigate all this, while also raising your other two children. Our little babe also has a big sister, who was 4 at the time of our hospital stay, and I'll say, it was quite draining trying to care for them both!
Anyway, I know it's always helpful to know who is out there reading your blog, following along, and sending good energy your way, so just letting you know we are here! If you need a listening ear, I can do that too.
Best wishes to you and yours,
Kristin, Isaac, Lea, and Eowyn Hasselblad (kwoodchuck@gmail.com)
(http://www.caringbridge.org/visit/eowynhasselblad)
Thank you for sharing. It makes a difference knowing that others have made it through the tough times. I hope your daughter is doing well now and we truly appreciate your story. With the stuff we have had to go through lately we are running on empty, as you are probably very aware of, but we still carry hope and are in constant prayer. We appreciate you following Ava's journey even though your walk is still a difficult one.
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