There's Always Something

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There's Always Something

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boxingI've learned that when I do not agree with a diagnosis to get a second opinion. I've learned to make the doctors who delivered that diagnosis to be their own second opinion and if it was based on the test then I make them retake the test.

In the last month I've had to do that twice with Marc. In October when he was in the hospital because of seizures they said they'd found an infection in his blood. Apparently, the same infection that was in his brain. It was a diagnosis that I was adamant about being wrong. I was devastated. I made them retake the test because I just knew it was a false positive. Luckily, I was right. Unnecessary medication avoided.

This time they're saying Marc has a parasite called Strongyloides Stercoralis. They claim to have found it from a fluid culture of his left frontal abscess.

What?

I understand that Marc is a medical anomaly. I have to hear this every time they talk about him and every time I meet a new doctor being introduced to his case. I get to watch 20 medical students pile into his room most visits and stare at us like we're monkeys in a zoo. It's quite exhausting really. I get to explain his condition multiple times a day. But this, I did not agree with.

I made them recheck the sample and take another sample. It made no sense because he had a brain biopsy prior to this surgery and there was nothing but the infection that was found and they barely found traces of that. That was just in April. He hasn't left the house to do anything and this parasite is only found in third world countries and in really filthy surroundings and are usually found in sick pets and rural areas.

Ahh! Did I tell you the very angering story of our roommate situation? I believe I did. Filthy beyond belief.

I created a clean room in our master bedroom and only after his last hospital stay which was prompted by a seizure he had from being exposed to cat dander and other molds from moving the roommates couch from the living room to the garage. Is it possible he inhaled the parasite then or it entered through his skin and found its way into his brain? They never did a surgery on the last visit just took nasal cultures which tested positive for staph which is why he has the IV antibiotics.

I became furious. IF he has it... and that is a very strong IF because we are still waiting on the results from the second round of tests, then we know exactly where it came from.

It will prolong Marc's stay in the hospital, it will require that I get my own testing that I cannot afford because I have no medical insurance so that I can pay for his insurance, and it could possibly cause more harm than good to his recovery.

Regardless, I am exhausting all of my resources especially financially to get the house cleaned before Marc gets home and even still I will have more that needs to go into making the house safe once I get him home.

It's a never ending battle and it is exhausting beyond belief. My heart hurts for Marc that he has to keep going through all this, I am angry because the roommate and his mother acted very flippant when I brought this to their attention, and I'm disappointed in myself because I completely thought better than to put ourselves in this situation and I listened to what I felt were lies from the roommate and allowed others to talk me into making this move that I am now regretting.

I can't change what's been done but I can definitely find a way to correct it. There is always something that keeps getting in our way. I'm just trying to take each blessing as it is given to me. Right now Marc is alive and on his way to getting better and that is my biggest blessing.

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carlaschuchman

Casandra, I am surprised to come across your blog that you are dealing with infection as well. My husband/boyfriend of 24 years have been battling one, now two, I think, infections for over a year now. 8 IVS a day, feeding through a tube because the infection ate a hole through his esophagus, they did surgery and this latest abcess, infection may or may not have been caused by them allowing him to begin eating, all soup like substances, because nothing can be seen on the scans. They really don't know if they will know where this other infection/abcess is from or how it got there. They like to talk about more surgeries, but Smokey, my loves name, is tired and I don't think he wants or could handle another. A surgery that could be as long as 14-20 hrs. He is very tired, as I am, but as long as he wants to fight, I fight with him. I can see the wear on him. He was getting better we thought! We was looking good and we really thought we were turning a corner....then...\r\n\r\nAnd I know how you feel about feeling like a monkey and all the students coming in. We are in SC and go to MUSC. They are a very good hospital, and I am pleased with most everything, however it seems this last visit they got everything they could, wrong. It has taken almost 2 weeks to straighten out a mess that never should have happened.\r\n\r\nI pray that yours is on his way to recovery and things will go no where but up from here.

EllysGdaughter

Oh, Casandra, My heart hurts for you. We work so hard not to have regrets and it is hard to see at this point what all these trials mean in your situation! I am sorry that not everyone knows how to respond to the truth, your advocating has brought truth to light without alienating Marc's doctors! \r\n\r\nYou are strong and whatever Marc needs, you will make sure he will have! You are taking one day at a time and not rushing towards a conclusion right now. Keep on, keeping on. Listen to your Father and His Spirit to guide you, you are His child not grandchild but Daughter!\r\nI am looking forward to meeting you and Marc in the near future!