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.



Berkeley had her visit to PCMC yesterday. She saw the ENT. Her ears are still full of fluid. In one month they will check again, and if they are still full, they want to insert tubes to prevent speech delays. They also did a nasal biopsy so they can rule out PCD. The results will take a couple weeks. The doctor was quite certain the children do not have it. They also did a follow up chest x-ray to be certain all the pneumonia had resolved. It had. So why the oxygen? Her pediatricians latest diagnosis is that she has chronic pulmonary lung disease. In a nut shell, it means her lungs were damaged in the first couple weeks of life, now we are waiting for them to heal. It takes months to years.

I am not certain about this diagnosis. This is something which happens to extremely premature, low birth-weight babies, usually intubated for extended periods. I just don't think Berkeley fits the bill.

The ENT meanwhile, had no other possible explanations of the coughing, at least none that fit my perception of the childrens symptoms. I asked him how to tell if the cough is caused by dripping from the sinuses or is coming from the lungs. He said there is no way. That was frustrating. I'm not sure how to put this behind me until I know their lungs are safe. Most likely they are, but I don't have that peaceful certainty yet. The ENT did recommend the children see the Immunologist. Ellery has already been screened for immunodeficiencies, but he felt further investigation may be helpful. So I guess we will try that route as well.

Maybe the pulmonologist will have some more answers.


Anonymous said...

I am so sorry about little Berkeley's lungs. My brother had a baby boy in December who got holes in his lungs from the stress of delivery (they think). He was in the hospital for almost 2 months and then came home with oxygen for another monthin a half. I think with her being in your home and you being so healthy she will be off her oxygen soon. Good Luck

Brittney said...

So many twists and turns! I hope you find some answers soon, and if not, at least some comfort and peace of mind. :)