Lydia’s rough week (and ours too)
It was another rough week for Lydia as she is still recovering from surgery and battling a lung infection as well as the sepsis from her bowel perforation. She ended up getting pretty sick again last week requiring additional ventilator support, blood and platelet transfusions and making sure everyone is paying close attention to her. Per the recommendations of the infectious disease docs, she is now on 4 high powered abx (for those in the medical field: gent, ampicillin, cipro and bactrim) and an antifungal (fluconozole) to battle all the bugs she’s gotten. She likely ended up with the lung infection just due to her being sick and immunocompromised and being intubated for so long. She is slowly starting to get a bit better and she was looking at us for awhile yesterday before dozing back off. She once again is pretty swollen all over and looks like our little sugar sack with a barely visible chin. Fortunately, her most recent echo still shows her heart to remain stable. When this will start to change, we we’re not sure, but know she will start to decline before needing surgery.
Her other issue at the moment is her jaundice and elevated liver enzymes. Her direct bilirubin has now climbed to 14.9 (normal under 0.3) so her liver is under stress due to the IV nutrition she has been receiving. We keep hoping she will soon be able to go back to feeds into her stomach, but it will likely still be a few more weeks before she will be able to tolerate them. The plan for now is to change her lipids to Omegaven which is an omega-3 based lipid solution made from fish oil rather than the omega-6 plant based lipids she currently is on and which is mainly used for IV fats but can be hard on the liver. Omegaven has been widely used in Europe with good success in reversing liver damage to babies on IV nutrition, but is not yet FDA approved in the US yet. The docs have FDA approval to use it on her, but we are still waiting to hear if we can get insurance to help cover it. Since it is considered “experimental”, insurance doesn’t tend to cover it and at $350/day it’s just a bit out of our daily budget range. I’m pretty sure I could get some freshly caught Alaskan salmon flown in daily for that. We’re still hopeful that we can get it covered before having a “Fish oil for Lydia’s liver” benefit.
Please keep her on your prayer list as she still has a long ways to go before coming home. She needs to be pretty healthy before she’ll be able to tolerate her corrective surgeries and we pray she can just hang out and grow in February without any more road blocks.
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