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.



I have to say I am quite fed up with Berkeley's doctor. I have tried to reach out to him and be friendly but he seems to be deeply resentful of me and my child. He continues to make vague promises of talking to pulmonologists and making referrals. He told me he thought her congestion was clearing up, when it is completely obvious to every nurse and caretaker she is full of gunk. This was after he didn't pick her up, just listened to her lying there sleeping. Sleeping is never the problem for my kids. Their noses don't run and they don't cough at night.

He keeps pushing Berkeley so hard and her oxygen needs increase and she becomes so exhausted she can hardly open her eyes, let alone get a full feeding. He tells the nurses that we better not be here when he comes back in 3 days. He wants her off oxygen when she gets home. I don't see how that is possible since this morning she de-sated in less than a minute and started to get dusky when they tried her on room air.

I want to get home too!!! I want my baby home! But I also want her home when she isn't going to wither away, or have brain damage from not enough oxygen.

It honestly feels like he is having some sort of power struggle with me. I feel like it is really working against the kind of care that Berkeley is recieving. I will continue to try to be kind and friendly and respectful to him. I also have tried to build his ego, and let him know I am baffled about the eating situation. I need his expertise etc. But I can't tell him I baffled about her secretions.

I called our ENT and set up a consult about Ellery and Berkeley. She is out of town at continuing education classes. But she had just called her nurse, excited. She thought maybe she had run across another possible explanation for my children's symptoms. My call was timely. When she returns we will meet with her. I am anxious to hear her ideas. She is one doctor who is thinking at least about her patients, and trying to figure out things she doesn't understand. I appreciate it so much.

We are starting a 24 demand trial. She doesn't have any minimums, she just can't lose weight. She is 5 lbs 13 oz. If we make it, they will remove her NG tube tomorrow morning and then we will have a 24 request period with no test weights. Finally we will have a rooming in night, on the home oxygen equipment and monitors. If all goes well we could be home Saturday morning, or maybe we could combine the 24 request and rooming in and come home Friday.

I came in this morning and Berkeley's nose was all bloody, the nurse last night seemed to do quite a number on her. We have had some absolutely fabulous nurses in Nursery B, it makes such a difference. But then we have some which unfortunately seem almost incompetent. Of course I am very fussy, it is my baby. I want to be caring for her 24 hours a day!

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