November 15: just reflection

On days where there seems to be little in the matter of medical things...you may find my postings to be  a bit more reflective. I'm finding that this writing can be therapeutic, though wearing my emotions on my sleeve is a bold step for me, and I don't or won't always do this. I am absolutely encouraged and humbled by the big stack of cards from complete strangers in Boise/Weiser. 

Yesterday I was annoyed by the pessimism of doctors. I realize this is their job, but I was just sick of hearing it. I am not so naive as to believe that I will undoubtedly get to take my baby home. I realize the extent of injury to her organs has yet to reveal itself. I also know that Ava has overcome insurmountable odds, and I will say it again, that I have no business to presume to know what God will do with her life..or mine..or anyone's for that matter. In the meantime ALL I can do is be thankful for another day with my baby, because at this point, I know she's in there somewhere. I totally forgot where I was going with this, but hey at 2am I'm just proud to sit my rear down to type. 

Vent settings were adjusted today. I'd like to say "weaned" but, really - by the end of the day they were pretty much in the same spot as the beginning. A new attending doctor came on and had slightly different priorities compared to the last. Yesterday there was some pus coming out of a sore on Ava's belly. Under the microscope it showed gram negative bacterial rods but as of yet, nothing has grown in the culture. To be a little safer they started a broader antibiotic that covers a few more gram negative rod type bacteria. An ultrasound was done today to see if the sore had an infectious tract reaching into her abdomen. The results said "maybe" so that was super helpful. I didn't hear anything more of it this evening. The goal tonight is to pull more fluid off her body and to wean the vasopressin heart med. She was taken off the vecuronium paralytic this morning and by the afternoon she was moving all limbs and head and opening her eyes. I was torn. It is so nice to see all the movement but she was obviously uncomfortable. I think she hates the ventilator. Heck, I do too, but it can deliver stronger breathes with more pressure in a gentle way. "Gentle" is relative. This evening they added a third drug for sedation. I sure like it when she opens her eyes to look at me, but there is some obvious distress so I'd rather her be drugged up and comfortable. 

We had a care conference today. The doctors gave us a review of systems and were careful to stay positive rather than tell me all the bad things that could happen. I'm sure social services gave them a heads up about my concerns for this conference. Plus, they invited our chaplain friend from rainbow kids and another nurse from another team to help us feel protected I believe. Our big concerns right now are...ok, everything is a big concern. We are concerned about the pressures that the right hearrt are working against. We are concerned about the liver. Ava is very yellow, the bilirubin is high. We don't know how much of the liver was damaged and how much, if any, survived and can function again. We don't know about the health of the kidneys. I guess this is a slightly lesser concern in the immediate future because dialysis can take over for the kidneys for a long time..3 weeks to life I'm told. We don't know about the small and large intestines. They really need to work. They can't regenerate themselves like the liver and no machine can take over for them. Infectious disease still has no idea how this event started. They do not think it started with a UTI. They are still leaning toward the atypical HUS condition. In a perfect lovely world with perfect steady improvements over some unknown length of time there is the potential of back-transfer to EIRMC to complete recovery. I'm not sure we'll even be in this boat but social services is checking with our insurance to see if it could ever happen. 

The Bible verse for today, that has been stuck in my head since yeterday, is my favorite.

Do Not Worry

²⁵ “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?²⁶ Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? ²⁷ Can any one of you by worrying add a single hour to your life^[a]?

.....28-33...... ³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:25-27,34

on other fronts: I am in denial that Ivy is no longer a newborn. case in point:

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