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.


Berkeleys Bedroom

Lots of good news. Berkeley finally had a great feeding. She drank 35 ml this morning. (They weigh her before and after the feeding.) Last night was 5 ml and this afternoon 12 ml. She should be getting 50 ml at each feeding. After she does that twice a day, we get to move up to trying feeding 4 times a day. In the picture below, of her little "bedroom" you can see the syringe sitting on her bed, full of my breast milk. It is pumped into her through her NG tube.

She is hidden under all those blankets in there. They keep them quite snuggled in. With all the frequent suctioning she seems to be doing much better. Today they decreased her flow down to .5 liter again and her oxygen demands remained stable between 24 and 30%. This was all great news. She still retracts on and off, but the suctioning seems to ease her effort of breathing.

It seems all the nurses, doctors, respiratory therapists and occupational therapists and quite intrigued by her, and PCD. The occupational therapist last night confided with me, how she wished doctors would listen more to parents. She said I was teaching all these doctors and nurses a thing or two. She felt they would be able to identify other children suffering from the same condition in the future.

Suspicious Chart Note

My nurse then admitted, the neonatologist who had Berkeley transferred to UVRMC, put a note on her chart to "Ignore the parents. They are self diagnosing." This was also the same doctor who assured me she had pneumonia and her secretions would be gone by now. (I understand we had to treat for pneumonia no matter what. If we didn't and were wrong it could have been disasterous. I was just concerned they were missing the underlying problem.)

The neonatologist who is a geneticist is certain PCD is the proper diagnosis. Now there is a thick packet sitting in Berkeley's bedroom for all to read up on, and every time the doctors or practioners call to update me, they ask if there is anything else I recommend.

I understand there are crazy's out there trying to tell doctors what to do. And admittedly I suffer from that syndrome myself. However, I am also an extremely careful researcher, and I would never try to make my children appear to be sicker than they are. The last thing I want to do is improperly label or treat them.

But when it was clear to me, the path the doctors were using to help Berkeley was ineffective I had to continue to speak out, for the sake of my child. If I am not her advocate who is?

We still have no timeline for when she can come home. But hopefully she continues to progress forward. Her cough is getting so strong and productive. You can hear it echo through the NICU. It is quite impressive. And little Berkeley gets all sorts of cheers when she coughs. They are all so proud. It means she is starting to manually clear all the junk that has been clouding up her lungs.


Jessica said...

Yes!! Oh I squealed when I just read this- day by day getting stronger..... the doctors are listening..... Feeding better..... go Berkeley!

Brittney said...

Yay! So many little triumphs! I hope this coming week brings lots more!

Miller time said...

You are such a great mom ! don't be afraid to teach the doctors a thing or two. Its that motherly instinct that is going to help Berkley.
I hope that we will be able to come down and see you guys while were here, even if we can't go visit Little Berkley. I'm dyeing to hold her though. We are still keeping berkley in our thoughts and prayers. We love you guys:)