Let's see... where to begin. We brought Noah home from the hospital on Tuesday the 13th. We were excitedly apprehensive. We still had no clues about what caused the clotting, and he was not really feeling any better than when we took him in on the 2nd.
A few days before we left the hospital his headaches started up again and got much worse the first day we got home. Dr. Bhonsack, the doctor everyone said was super smart, was not aware that we had been sent home and called as soon as he found out to see how we were doing. I told him that Noahs headaches were getting worse and he suggested that we should take him to the ER at Primary's if they got any worse. The concern was that if the original clot in his brain had caused the initial headaches, then maybe he was having more clotting in his brain with the presence of more headaches. (I'm typing fast so let me know if I'm losing anyone.) Of course, this was very concerning to me, so the next day when his headaches became worse and his face started swelling more, I took him back to the hospital. They kept us overnight and did a CT angio of his brain as well as an MRI. They found no evidence of new clots so they felt comfortable letting us take Noah back home.
At this point, all of the test results are in and the verdict is...... well, there is no clear verdict. However, they did get a positive test result. One of the initial tests they ran is called a venom viper test. This test is for ANTIPHOSPHOLIPID SYNDROME. This test result came back slightly abnormal(not really abnormal, just a hint of abnormal). Since they didn't find much else to hang their hats on, they ran some further tests to consider the possibility of ANTIPHOSPHOLIPID SYNDROME. Several secondary tests were run. Of these, one test result WAS positive. Sounds great right. Well not really. The one positive test result has a disclaimer. If this lab test, HEXAGONAL PHOSPHOLIPID NEUTRALIZATION, is done on a blood sample of a pt who is within the therapeutic range for heparin (which Noah was on the day the test was drawn), then the possibility of a FALSE POSITIVE is GREAT. (According to the literature the doctor gave me.)
So what does this mean for Noah. It means the Rheumatologists decided to start treating him with immunosuppressant drugs (steroids for now). Although I believe they are treating him for the wrong thing, the drugs really seem to be working well. This is probably because his body was having some kind of ACUTE INFLAMMATORY RESPONSE and corticosteroids are an anti-inflammatory.
I know this probably all sounds like a bunch of rambling. I just need to get it all off my chest, and this is my way to process it. I do have a new theory.... not sure I should say or not, but really, what the heck. My new theory is....no, I'm not going to say. But I am going to ask the doctor about it on Tuesday.
Long story short. WE ARE HAPPY TO BE HOME AND ECSTATIC THAT NOAH IS FEELING A BIT MORE LIKE HIS HAPPY CHEERFUL SELF.
6 comments:
YAYYYY!!!
Wouldn't it be cool if you solved the mystery? Then we could call you House!
Your verifier says urged. Hmmmm
Do you happen to feel a sense of urgedness at all? If so, then your verifier is on to you.
I'm so happy you're home and Noah is showing signs of progress.
Wow! What a lot of info to process! I hate those tests that might be or might not be positive. Soooo...since it's Tuesday, did you ask him? Did they think your theory might be right? Or, do they have any new info? We are so glad he's home and doing better, and we hope it keeps going that way. Blood cots are so scary! Keep me poted.
I am so glad he is feeling better and hope he continues to improve! And as your friend, and fellow nursing alum, I am dying to know your theory is and what the doctor said about it :)
I saw the Rheumatologist yesterday and talked to him about the possibility of the Antiphospholipid syndrome test being a false positive. He said he was not aware that they had taken the blood sample after Noah was on Heparin. So he agreed with me that the test was no good. So he is now suspicious of that diagnosis too. My theory was that Noah had Strep that went untreated (we no from the labs that has strep antibodies), which then turned into a Kidney infection which caused the clotting process (he had protein and blood and white blood cells in his urine), which then turned into Rheumatic Fever (Causing the fevers, nausea, vomiting, rapid and irregular heart rate and generalized acute inflammatory response). So I asked the doctor about my theory .... and he did not really agree. He didn't think Rheumatic Fever. He said he's seen alot of that and Noah didn't look like he had it. Well, there goes my theory. Oh well. Whatcha gonna do? We are looking into a specialist in either Denver or St. Louis, but I think we may just wait and see how the treatment works for a little bit.
I'm glad you're home and that the treatments are providing some relief. Noah is so lucky to have a mom who is a nurse!!!
Thanks Heather. We're glad to have you back in the ward. :)
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