Well, Pax got sick. Really sick, actually. I was positively horrified when I recieved the call from the pediatrician....mostly because she sounded....a little panicked. Paxton was swabbed on Thursday the 30th because he has gone through multiple rounds of antibiotics and still has a bad cough and DISGUSTING nose. And infected ears. This has been going on for 9 weeks. The doctor told me the cultures would sit over the weekend and they would call me with the results on Monday.
The results were bad, probably the worst they couold have been. They found pseudomonas aeruginosa and strep pneumo. A rather lethal pair. Pseudomonas aeruginosas are VERY serious, and are only found in people that are severely immune compromised (think HIV or chemotherapy patients), have severe burns, or have chronic lung disease. Damn. Lung disease it is. The stuff has set up a friggin colony on my baby's lifeline....his NG tube. His link to hydration. It's all through his sinuses, in his ears, throat, and more than likely, his lungs. It's particularly notorious for being antibiotic resistant, so the meds we were giving him had no effect. Might as well have been giving him grape juice. So he needs a round of IV meds...strong ones. Ones that have serious side effects like muscle damage, heart arrythmia (have I mentioned he has a hole in his heart??), blood thinning, and other nasty things. And it's not exactly approved kids. And he has a bad history of blowing veins with IV's, he can't seem to keep a line for more than a day.
Anyway - the NG tube thing kind of became a problem all of a sudden. So Infectious Diseases, Pulmo, his pedi, and Dr. Gorham (not sure what to call her, other than Paxton's main doctor...she oversees everything) all got together and pretty much attacked the pediatric surgery department and demanded he be seen ASAP. We got a next day appointment.
We met the surgeon today, she will place his gastronomy tube (G tube) on Monday morning. He will get a low profile Mickey button, which is nice...no PEG tube to deal with. Those things are mildly appalling. His ENT will also place ear tubes after the stomach surgery is done. Then he will be inpatient until he recovers. Before we go home he has to be able to tolerate pain without morphine, be able to tolerate feedings without vomiting, and we have to know what to do with the button and how to take care of his stoma.
So in a couple of days I will be able to kiss BOTH of my sweet boy's cheeks.
Too bad I am scared to death. I just wish this was all a bad dream. Don't ever take the little things for granted....like feeding your baby a bottle at night.
Wish Paxton luck, and keep him in your prayers.
1 comment:
cass...i wish your precious baby healing...i feel so sorry for him, and you, for having to watch your baby go through something so serious. you are a coragous, strong woman. you are right--we should all count our blessings, the little things, and not complain when our babies want a bottle at night. i can't imagine the pain and fear you have right now. his story literally brought tears to my eyes...please keep us posted on your progress! much love sent your way!!!!
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