We invite you to share in our family's journey. Our oldest Daughter is a pure delight and also happens to have CHARGE Syndrome and has been through numerous medical procedures. She has two little sisters who adore her and bring endless amounts of energy and joy to our family. These are our stories.
8/25/09
Maya at Mary Bridge
PICTURES OF MAYA SUCTIONING HERSELF AT MARY BRIDGE HOSPITAL
At Children's Hospital, Maya was diagnosed with a terrible case of pnuemonia...her left lung was all cloudy a "white out"...no clear air in it. She seemed to get more comfortable over a few days and spent from Sunday-Thursday at the hospital and was then discharged. Thursday and Friday morning she seemed happy to be home and chilled out much of the time on her bed in her room, while her sisters played nearby. Friday at 5 PM she started having a cough attack that lasted non stop until 9:45, when the nurse on call made me promise her I would call 911...I did. Maya was admitted to Mary Bridge hospital in Tacoma where her x-ray showed no improvement from her initial X-ray at Childrens...her pnuemonia was still just as bad. Another X-ray and CT scan later showed that her left lung had collapsed as a result of mucus plugging up her bronchi and not allowing air into her lung. A procedure on Sunday scoped her airway (she was intubated) and sucked up an exuberant amount of mucus from her bronchi. 4 IVs, many episodes of suctioning, 4-5 differnt types of antibiotics, routine nebulizer treatments, and routine CPT and 1/2 hours time periods wearing a vibrating vest, Maya continues to be at Mary Bridge where her status has gone unchanged, not worse, but not better either. In the past 24 hours Maya has begun to cough up large amounts of goobers (a good sign actually) and we all hope and pray that the X-ray tomorrow morning will show improvement...Drs. today noted air was heard moving in and out of her left lung...a good sign of improvement.
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1 comment:
Oh my gosh, Marty! I am so sorry to hear Maya is so sick. Are you guys home now? I hope so as your post was a week or so ago.
I wanted to let you know about a family I met through our blogs. Their daughter, Moriah, has CHARGE and has been between Stanford and LA children's hospitals for the last 10 months. I wanted to give you their blog address in case you were interested in commenting/contacting Victoria (the mom).
Love, Jesse
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