t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


Baffled Again

This little angel continues to baffle both myself and the doctors. She lasted about long enough to snap this photo on her room air test yesterday. At the doctors office she was looking great for about 10 minutes, so her doctor ordered a pulse oxymeter for us to monitor her at home for 12 hours. I was ultra confident she would breeze through, no problems. She was on her way to desat after only a half and hour. I wondered if maybe it was a fluke. We put her back on her oxygen for an hour and then I tried again. The same thing happened. I even tried once more during the night with the same results.

I kept the monitor on through the night to find her optimum oxygen level, since it has just been guess work since we left the hospital a month ago. She is comfy on 1/8 of a liter (between 90-96%), but nothing less.

(You and I would have an oxygen saturation in the high nineties to one hundred percent. Low nineties is okay, under ninety is troublesome for prolonged periods.)

I know her lungs are mature, so I just wonder what is going on. She is a plump 8 lbs 6 oz, in the 25 percentile for weight, 50th percentile for height at 21 inches. So why is it that she can't seem to get enough oxygen to those lungs?

Post Note (9 pm): Berkeley's home nurse visited today. One of the perks of having such a rough start is the monthly visits of an RN. The visits check growth and development. I love the free access to a nurse! I was discussing the oxygen situation. She had some insight for me. She said it is an extremely drastic change to go from 1/4 liter to room air. She found that very unusual. It is difficult for the baby to adjust to such a change so quickly. She felt like that could have been the major factor in her difficulties. Her recommendation was to keep the monitor as long as possible and to slowly wean down her dose. Sure enough, after being on 1/8 liter for 24 hours she began having much higher saturations. She is currently on 1/16 liter and is stable so far. This was a very comforting developing. Sometimes I think nurses know a lot more than doctors.

1 comment:

Brittney said...

Wow, that's great news! I'm glad your nurse was so helpful. And that last picture is precious!