I am late getting this post out today because I didn't sleep last night and I'm trying to get enough coffee in me so I can function today. Omigosh, what a day Thomas and I had yesterday!
First of all, I know some of you are wondering what kinds of wounds Thomas has exactly. I will reassure you that they were not self-inflicted but they are personal and I want to preserve Thomas' dignity by not getting into the details about them.
As for the surgeon's appointment yesterday, be glad I didn't post here last night. I was SO FURIOUS and my blood pressure was sky high and I couldn't see past my anger to form a coherent thought let alone a readable post. I have NEVER, in my life, had the experience that I had yesterday with a medical professional. I must first wonder,
"Is this the kind of care and personal treatment that Medicaid gets you? Are we, all of us on Medicaid, pariahs because our loved ones have this illness and people just don't think we deserve something better when it comes to medical care?"
So, the surgeon walked in, literally looked me up and down with a critical, condescending look and immediately passed judgment on me and then proceeded to treat me like crap for the rest of the appointment. I had to swallow a whole hell of a lot of anger and remember I was there for Thomas so any judgment passed on me and the anger I felt about it needed to be set aside in order to be effective for Thomas.
The surgeon first looked at Thomas' chart and said,
"I see you've been dealing with Dr. Baker."
Doctor Baker? Who the hell is Dr. Baker??? I knew then that we were not off to a good start. They hadn't even gotten Thomas' chart right.
Then he went on to examine Thomas and tell me that Thomas looked great. Hmm...great. Really? He has open wounds with 1 in deep cavities that I also discovered yesterday when I was packing them with gauze that inside the wounds, there are tunnels up UNDERNEATH what appears to be healthy skin. So this "medical professional's" opinion left a lot to be desired. He then whipped out 6 inch long q-tips, soaked them in hydrogen peroxide, and jammed them into the wounds. Hydrogen peroxide has been proven to be a medically incorrect way to treat wounds like this because it compromises and even damages healthy tissue. I asked him about packing the wounds and he said I didn't need to do that anymore and that just taking a shower once a day will keep them clean and healthy. Take me seriously here, no shower will accomplish what he's talking about. It just won't. However, according to the surgeon, the wounds are to be left wide open for 6-8 weeks to heal. There's not a snowball's chance in hell that I'm going to leave open, gaping, cavity wounds to be victim to bacteria.
So then I asked him for a referral for wound care and he turns to me with his now famous condescending look and says to me,
"You look like you can handle this just fine. You've done it up to this point, just keep doing it for 6 to 8 weeks."
I was stunned into silence. What was I supposed to say? I told him that it had been difficult for me up to this point to do this by myself and he told me that it really just wasn't that big of a deal. SERIOUSLY??? Needless to say, he wouldn't give me a referral so I could get Thomas proper wound care.
Then he informs us that Thomas will definitely need surgery but that he won't do it until the existing wounds heal. So let me get this straight. We're going to heal up the wounds so that we can make BIGGER, MORE INVASIVE wounds that'll require months of recovery??
Then...THEN came the icing on this disastrous cake. The "medical professional" tells us the extent and nature of the surgery and then tells us that it has a 25% success rate.
Really? So why exactly are we doing this surgery? With that kind of success rate he said that Thomas will probably have to have more surgery in the future.
I am completely speechless.
Then he sent us on our way and we went out to the car and I just sat there in stunned silence and anger and tried to get my thoughts together enough so that I could even drive. At that point I had no clue what do to, where to go, or what to think. I was filled with such rage!
Today is, fortunately, a new day. I am still filled with anger but I am now a mother and advocate on a mission. Starting at 9am I am making calls to get referrals for wound care and I'm going to figure out how to get a second opinion on the whole surgery thing.
THIS IS NOT OVER. NOT BY A LONG SHOT.
So that's where we are at the moment. As much as it hurts my heart to cause Thomas pain, I'm going to keep packing his wounds until I get some professional help.
Poor Thomas is now SCARED TO DEATH about surgery and I'm concerned with keeping him stable and keeping those nasty positive symptoms from returning because he's so stressed out. My boy does not deserve this and I'm going to fight like hell for better care for his wounds.
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