Hi Everyone, Happy Monday!
It was a busy weekend. Julie has been in the hospital since last Thursday night. She started the IV antibiotic that night and she had a unit of blood. All of her bloodwork was looking good and she was feeling better on Saturday morning and so I left for a couple hours on Saturday to go home and let the dog out, and stopped by my cousin's house. When I got back to the hospital one of the doctors switched her antibiotic. The reason was they were preparing her to go home. Well that was nice that they thought she could go home soon but the new antibiotic made her have digestion issues and that ended up as a major set back. Especially because that was the same antibiotic that she had trouble with a couple weeks ago and the doctor said, let's not do that again, let's try the IV and then some other doctor comes in and changes the plan and gives her the antibiotic that makes her feel worse. Come on people! Talk to each other! Document things in her chart so there are no more setbacks or mistakes! We do believe that there is an infection inside her tumor because the last CT scan showed inflammation in that area but every test that they have done for infection has been negative and so no one can find an infection any where in her body but her white blood cell count gets high and she does get fevers. We've been told if the infection is isolated to inside the tumor there is no way to know that.
I called the Pulmonologist this morning that was the admitting physician on Thursday and asked him if he could check in on Julie and order some bloodwork again. His nurse told me that he is not allowed to do that. Once she is admitted she is under the hospital care team and he no longer gets an update or opinion on her care plan. So, the doctors today think she is good enough to be sent home which sounds great and we would all love for Julie to come home BUT if you've been keeping up with things our major point of concern is her Hemoglobin. According to the online chart, they tested her hemoglobin on Saturday and it was 8.5, the nurse came in and told us it was 8.6, I just read a report from the Dr. yesterday that says it's an 8.8, yet there are no tests that I can see in her chart that says 8.8! Why does everyone have a different number? Who's chart are they reading?! For reference, anything 7 or below would qualify for a blood transfusion.
My advice to everyone is to think about who your caretaker, POA, etc. is going to be and select someone that is tech savvy, resourceful and really ready to advocate on your behalf, because you need to stay on top of these online medical charts and cross check what these doctors are doing or it could cost you your life. I am currently managing THREE (3) MyChart accounts just to keep up with all the tests that she is getting done and double check what these doctors tell us actually match up with the test results. I've had multiple experiences where someone tells me something and I say that wasn't in her chart and then they look at her chart and I'M RIGHT! What the heck is that about? These doctors have years of schooling and experience and have so many patients and things happening they don't get information correct and it's ok? Not ok in my book, so I keep fighting, I keep asking questions, I keep challenging these people and keep getting other opinions!
I spent the "free" time I had the last 2 days printing off her medical records from the last 8 months and I'm sending them to a new Dr. that I found in New Jersey to get yet ANOTHER opinion. It may be another month before I get this doctor's opinion on anything so we will be patient and keep praying the good Lord gives Julie another day, another month, more years...
Please keep praying with us and for anyone who is fighting any illness, and for these doctors, I think they need some prayers too.
Love and prayers to all.
Joe and Julie
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