Journal Entry

Hi All! It is good to be out of the PICU and at least getting the typical 5 hours of sleep in my own bed. Here's the story... Thursday, Feb 17th, Brenna wasn't feeling great. I didn't think this too unusual so I was rushing her out the door so I could get to my hair appt. After all, having no grays is important, ya know. She proceeded to throw up on me and pass out cold. After which, my sister, Karrene, and I called 911. She hasn't passed out for almost a year now and I was caught off guard. Just like in the past, by the time the EMT's got her out the door, she was giving me all kinds of instructions to not forget her art stuff and the new stuffed animal she just bought, etc., etc. I was groaning about spending another grueling 6 hours in the emergency room. It was a little more than that and they sent us to the 4th floor. Yeah! The big screen TV with internet ready computer, private room--didn't last too long. That night she passed out and they sent us to PICU where we spent the next 8 days! They notified me the phlegm she was coughing up was from a bronchitis brought on by 2 gram-negative (life threatening) bacterias in her bloodstream. HOLY COW! And I was hoping the breathing exercises would take care of the phlegm. I was then grateful we ended up at PCMC. They gave her big time antibiotics and determined her port was harboring the bacteria so we had it removed and pic line put in. Meanwhile, her breath rate at night would go down to 2 breaths per minute so the docs performed 2 sleep studies and put her on a bipap, which she detests and fights every night. On top of that, I had to wash her hair THREE times in the PICU! That goo is so tuff to get out of her hair! THAT'S NOT ALL! On the blessed hour of discharge, (4:30 Friday eve-won't be back until Monday) insurance started giving me and Praxair crap about not paying for the bipap machine. "That will be $1200, please!" Sorry, no pocket change this year! PCMC wouldn't let us go home without one and I didn't want to stay another 2 days in PICU. They ended up agreeing to pay for 2 months and then, if we need it after that, we could discuss a purchase. We pray that the tumor will continue to shrink and give her back her functions and we won't need it. At home this weekend, I have had to give her 2 more weeks of Fortaz and one more week of gentamyacin. Brenna gets totally sick on the Fortaz and it is so hard to watch her cry while I administer pain to her. The docs don't know what to do about it. Hopefully, we will get an answer tomorrow when we visit clinic. What a stressful week! This too shall pass. (Gordon gives me uplifting quotes all the time.)

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