Home from Denver a week ago last Saturday, spot shows up on Brooke's leg Wednesday morning (wasn't there Tuesday night), admitted to the hospital in Clovis Thursday, transported via ambulance to Presby. in Albuquerque Friday and finally back home late Wednesday night. This was a NASTY infection! It went from a silver dollar size to covering her entire thigh in a matter of half a day! And that's with three doses of an antibiotic in her system! Long story short...she's on high powered antibiotics and so far so good. Please pray that these meds continue to clear up what's left of this infection and that her body is able to fight anything else that might show up. This is the challenge moving foward!
We no longer have the doctor/hospital issues we were having...I moved our insurance over to Presby. as of 7-1 and started fresh with their hospital and their doctors. I pretty much "got rid of" everything we have known for the past 20 years, with the exception of our Immunologist. Our pediatric Cardiologist is at Presby. and since we weren't getting anywhere at our old stomping grounds...I decided it was time to go where Brooke would be treated. A mom's got to do what a mom's got to do! Here's what I'm talking about: Our original cardiology appt. wasn't until next week! That's 8 weeks after a mass was found in Brooke's heart. This mass was found from a test ordered by a doctor there that has somehow fallen off the face of the earth! Haven't seen or heard from her since we saw her in early March. Our Immunologist plead with the Cardiologist to get her in last week when he learned she was in the hospital with an infection - and they wouldn't do it. That sealed the deal for me. If you don't care - I'll find doctors who do. The care we got at Presby. in Albq. was great. No complaints whatsoever. This is a prayer answered!
We did get some much needed answers finally. The mass in the heart is a blood clot that is attached to the right atrial wall. Good in that it is attached and not freely moving. It moves with the heart. Our Cardiologist feels it may have been there for a while and could've been caused from insertion of the second port 9+ years ago. A nick. Treatment? We're on Coumadin...no change there. As long as this tubing remains in her leg, she'll be on Coumadin. While a blood clot isn't great news ever, especially in the heart, it beats the two alternatives! An infection of the blood has been ruled out, which was also good news. The blood cultures didn't grow anything which told the doctors that the heart isn't infected and that the broken off tubing in her leg isn't the cause of these problems as was originally the thought. The recurring skin infections is pseudomonas, which is a bacteria on the skin that we all have. Because of Brooke's neutropenia - she isn't able to fight it. This is going to be a challenge from now on! We saw a Cardiovascular surgeon who said he could remove the tubing but since it's not the source of the infections, he wouldn't recommed it. Not with all of Brooke's other issues. The Infectious Disease doctors had her on daily shots of Neupogen for three days which brought her neutrophil levels normal. Yay. Once they stopped the shot for a day, the levels plummeted. So it was a lesson in what works and what doesn't. We learned that the daily shots she has been getting in Clovis aren't doing a thing. Like the Immunologist in Denver said, her body makes neutrophils but they are being destroyed, or held hostage by the spleen. Basically, two of Brooke's issues could be fixed IF...she weren't Brooke. If the spleen was removed, the Neutropenia would go away. If the tubing were removed from her leg, the blood clots would go away. But...neither is an option for Brooke because of all of her medical issues.
Mike took Brooke to see her Hematologist Friday and he is consulting with the ID doctor in Albq. for a course of treatment moving forward. They are looking at possibly giving her Neulasta (a longer acting form of Neupogen) twice a month. (You don't even want to know the cost of this shot! And I thought Neupogen was ridiculious!!) We've got to try to figure out a way to keep her body ahead of the infections. Please continue to pray for Brooke's body to heal. For additional methods of treating her problems. For strength, for guidance and for comfort.
Thank you all for the prayers!!!
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