First of all, I apologize for the lengthy update but we have had quite a couple of days. We landed at 10:30 am yesterday morning and went straight to Paleys office. He has been traveling and they are remodeling his wing at St Marys Hospital (yes, wing because he is in such high demand) of the hospital so it was a ZOO. We patiently and hungrily waited (they told us not to eat or drink after 4 am EST because they were more than likely taking her straight to the ER) for more almost 3 hours to see Dr. Paley. Mackenzie was sent twice to X-Rays and the images (more than 1400, WTH??) from the Stanford MRI took forever to upload. Around 3pm he met with us and WOW!!!!! After a lengthy exam and review of all images, Paley decided that she needs a metal rod inserted in her arm and some grafting from her hip to fill some holes(???) in the bone. He said that because of the infection and heavy doses of antibiotics the images are basically worthless because there is so much going on. Any further testing would more than likely give us false negatives and the only true way to determine if/where the infection is still present is to take her off all antibiotics and closely monitor her before moving forward with any surgical intervention. He said if the infection is in fact still present, she will become more ill and have increasing pain. Soooooooo, surgery to insert a rod and graft the arm to repair the damage from the infection will be scheduled 6-8 weeks out unless it gets so bad that she can not tolerate it. We both left his office on the verge of tears. She is determined to return to school for 2nd semester and this may make it very difficult. Even more disappointing to Mackenzie is the fact that in 6 weeks she gets her drivers license. Dr. Paley explained to us that it is in her best interest to try and be patient. He can not fix the damage to her arm if an infection is still lingering and continues to cause damage. I booked us into a hotel for the night and bought tickets to return home at 7am this morning. Around 6pm last night, the infectious disease Dr called to find out how Mackenzie is doing and how the appointment went. I knew that telling them that Paley took her off all medications was not going to go over well and boy was I right. Both Lucille Packard and St Marys infectious disease teams disagree with his decision. We were ticketed to leave Florida at 7am this morning and they asked that we change our flight and meet with them at 8am. I changed the flight to 5pm. We spent our morning with the St Marys infectious disease team and I left there with a lot to think about and will be researching the hell out of this. Although they do not like Paleys plan, th3y agree that they do not work on diseased limbs and that he is the expert in the field. Ultimately, I must weigh both opinions and determine the best course of treatment. Unfortunately, there is no easy fix for any of this nor any tests that can give us information about the status of her infection because she has never and any of the textbook symptoms ie, bad bloodwork, fever, vomiting, redness or swelling. As our luck would have it, we arrived to the airport to find out our plane had mechanical issues and we get to spend the night at a hotel in the Dallas airport. As you can imagine, all she wants is to go home and forget about all of this. ME TOO!!! LOL..... maybe someday our story can be a bad lifetime movie and we can make lots of $$$$$ Love to all of you!
Posted on: Wed, 08 Oct 2014 03:11:02 +0000
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