Things were pretty uneventful until yesterday at about 6pm. That's when I saw Charlie's body arch clear off the bed. She was retching something fierce and she puked bile and blood. She had a farrell bag on and it was draining nicely so I don't know how why she threw up. We got her settled down and stopped her feeds and the nurses gave her a bath. She did it again. This time she desatted pretty badly during and afterwards so we turned up her oxygen. She still wasn't doing well so the doc came in. Charlie retched again, just for her. LOL She sent us down for new xrays to check tube placement and her lungs. Tube was fine. Lungs...not so much. She has a new spot on her left lung (previous spot was on her right lung). It takes only seconds for a kid to aspirate and cause damage ya know? She spiked a temp and went tachycardic on us, but with that many antibiotics in her system it didn't get too bad.
This morning her pulm doc said to stop the IV antibiotics and he put her on two less aggressive ones through her tube and one aerosol one (that won't bother her belly). He thinks the antibiotics were just too hard on her. And we restarted her feeds at 15 mls an hour. Later I noticed her right hand (IV is in her right arm) was pretty swollen so I asked the doctor about it and she said we could increase her feeds and stop her fluids but we're going to leave the IV until we know she won't need it anymore. So she's almost at full feeds and doing pretty well. We're hoping to leave tomorrow sometime.
There's a fine line between ignoring illnesses and using so many antibiotics. Obviously too many are bad. And Charlie is sensitive anyway. And her gut doesn't function all that well. It's not easy thinking that the best thing might be to NOT treat her aggressively. But I think we did make a mistake this time and we learned our lesson. She was miserable and we pretty much just made things worse. I mean, who would think treating a respiratory infection could lead to an almost-aspiration pneumonia?
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3 comments:
with the spots on lungs... I just wonder if (or why they didn't) screen her for legionnaires' disease (probably just due to too much studying in this mod... I'm in school now)
Poor little Charlie! I hope she's back to her sparkling self soon. So sorry to hear about her ordeal. The biggest obstacle with our kids is treating them correctly. If you hadn't gone the aggressive route and she had gotten aspiration pnuemonia from having a build up of so may secretions, you would have hit your head against the wall as to why you weren't more aggressive. It's pretty much a lose-lose situation. I understand completely!!!
Kat- her lung problems are fairly typical of her condition. They checked her blood, sputum, everything. It's just that she aspirates constantly that she has these pockets of stuff brewing in her lungs all the time. The new spot is atelectasis, which is like a collapsed portion of her lung. It happened to her right lung too. Because of all her aspiration and airway problems, she can't recover from it very well like a healthy person could. So it's a chronic problem. The spot on her right lung hasn't changed in a year. Anyway, she's diagnosed with chronic lung disease, chronic aspiration, atelectasis, pseudomonas, recurrent pneumonia...you name it, she has it. It's not any separate disease or condition, just secondary to her CP. And they say CP can't kill you. *rolls eyes*
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