Naomi hasnt been able to come off the high flow oxygen since she was put on it Sunday. Weve been able to get her down to 8 liters at 35%, down from 10 liters at 100%, but weve failed at successful weaning below where were at now. We had a scare last night as Naomis sats dropped into the 30s and 40s all of a sudden and she turned completely purple. I gave her blow by O2 at 15 liters on top of her high flow cannula but it took a bit before her sats finally came back up. Hearing someone call for help STAT to your childs room is awful! Naomi hasnt dipped that bad since, thank goodness. As I write this update, Naomi is in IR getting a picc line placed again. Her other picc was removed last Tuesday in preparation for our going home but....since we arent anywhere close to home anymore, she needs a long term iv access point once more. At three today, I will be attending a care conference for Naomi. This will be a gathering of multiple disciplines and physicians involved in Naomis care and basically everyone can weigh in altogether at where we go from here with her care. Naomis sudden need for respiratory support hit us out of the blue and has no obvious explanation. Her team has literally been scratching their heads on this one. As of now, Naomi will be going for a heart cath to help rule out issues with her Glenn procedure that was just done. Although they dont suspect to find anything, we cant know for sure without putting her through such an invasive procedure. In hindsight, its a good thing that little things kept cropping up here and there to keep us inpatient as it would have been worse to get settled in back home only to be flown back for respiratory distress. But, weve been here for five weeks tomorrow and all but maybe six weeks since Naomis birth. I try to keep my head and my spirits up (which is made ten times easier thanks to the outstanding staff here at NCH), but setbacks bring an overwhelming feeling of defeat. They force the questions to start swirling of what if this is the beginning of our downhill and how much more can my precious baby endure. At times I wonder, as Naomis mommy, how much more can I take...and Phil....and Makenna and Bryan, who havent had their mommy home for the past six months? So, if you all would, please continue to say prayers of strength and healing for our little Naomi, but also, please say prayers of comfort and peace for me, Phil and the kids. The amount of stress and the many facets that this type of stress has is simply indescribable. So fat, I think weve done OK, but this journey doesnt seem to be getting any easier or shorter.
Posted on: Thu, 22 Jan 2015 19:52:57 +0000
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