Saturday, January 23, 2016

The Ignorance Of The Masses

You just know someone is your good friend and that their parents love you when the father finds out that you have #schizophrenia and his comment to his son, who is your son's good friend,

"Watch out Jon! He's going to kill you!"

Yeah....

Way to show your glaring ignorance, stigma, insensitivity and seriously flawed personal character!
IDIOT!!!

Thomas told me yesterday that was what his good friend's father said to him when he revealed he has schizophrenia. And this is the friend that Thomas wants to move out of our house to live with independently. Needless to say, Dan told Thomas in no uncertain terms that he flat out won't allow Thomas to live with this particular kid.

I FULLY support Dan.

We aren't jumping on this lightly because this friend also has consistently taken advantage of Thomas and his money (the kid knows Thomas gets SSI) among other things. This comment about schizophrenia just took the cake.

Friday, January 22, 2016

Unbelievable. Just Unbelievable.

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.

TERRIFIC.

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.

Wow.

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??

SERIOUSLY??

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.
25%?!?!?

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.

Wednesday, January 20, 2016

At Last, A Proper Wound Care Education

Good morning! I really want to continue updates for you all because some of you are participating on the page here so I know how much you care about Thomas and how much you want him to be well. As I said yesterday, we had an appointment with his primary care provider who is a nurse practitioner. Thank God for her, I'll call her Christie in order to simplify this post.

Christie was surprised to see us again because we had just been in to see her last week for a standard 3 month follow up. At that time she had examined Thomas and expressed concern about his physical health issues but at the time she didn't know things would get as bad as they did last Friday. She examined him and talked to me about the condition of the wounds. I told her about our less than effective treatment in the E.R.. She asked if they had swabbed the wounds to see what kind of bacteria might be in them and shook her head in disgust when I told her how very little they did for him. Then she began treating them and as she did so, thankfully, she simultaneously taught me proper wound care so I am finally feeling fully capable of caring for Thomas until we see the surgeon tomorrow. While she took care of Thomas, she and I, along with her assistant, exchanged varying emotional glances at each other about Thomas' condition. In those moments, I knew my worst fears that I'd had for days were confirmed by a medical professional. This brought a strange comfort but also reinforced and increased my fears about Thomas' health.

There is no more guessing.

There is no more Googling and trying to sort through conflicting results.

I am left, now, with only the hard truth and I am left to find acceptance of everything.

It's a scary place
.
One thing Christie said, which she prefaced with saying she is by no means a surgeon, was that she believes Thomas will definitely need surgery. The extent of the surgery, however, is unknown. She explained what she felt would be the conservative treatment and then what could happen as a worse case scenario neither of which I am happy about and both of which are scaring Thomas. I have an ever-growing concern about the level of stress all of this, is and will, put on Thomas. As we all know, stress exacerbates schizophrenia symptoms and that is the last thing Thomas needs right now. It's going to take everything he's got to recover, even under the best case scenario Christie outlined.
So, today will consist of me trying out my newfound wound care education, a prospect that upsets me because it causes Thomas great pain. No mom wants to hurt her child and essentially being forced to do so is nothing short of traumatic--at least for me.

Now, our next step is to see the surgeon tomorrow. I'll post on Friday about that unless I find myself sitting cramped in one of those miserable hospital room chairs after having no sleep because Thomas is recovering and I want to be there with him every minute. I hope, though, that I'll be right here in my living room in my favorite recliner drinking good coffee instead.

Tuesday, January 19, 2016

Thank God For The Staff That Cares

As promised, and amazingly for me, I'm actually back today to update you all.

First, I want to thank all of you for your love, prayers, support and 'likes'. Every one of them helped in many ways. For starters, Thomas' wounds started to look better yesterday afternoon. They weren't bleeding and my totally medically inexperienced eyes think they are seeing little infection in the wounds. Perhaps my cobbled together medical supply table has the right stuff and perhaps I'm actually doing something right as far as treatment all thanks to hours on Google and, of course, no doubt, all of your support.

So, yesterday I took the risk that the surgeon's office was open even though it was considered a holiday and when an actual secretary answered (not an answering service) I didn't even say "hello" because what spilled out in a rush of gratitude was,

"Oh my God.

You're there.

Thank you.

I thought you'd be closed today and I really needed you to be open."

Then I laughed and apologized and said "hello". I explained to her that we had been referred to the surgeon and she initially told me they couldn't get us in until next week.

NEXT WEEK????

There was no way this was going to wait until next week.

She then asked details about the issue and then said,

"Ooooooohhhhhhh..."

And then,

"I'm really sorry." And then something about us being in it for the long haul.

Ugh. Terrific.

So she told me she'd call me back and see if they could move staff meetings and other things around and I hung up and waited.

And stressed out.


Then the call came, the call backed by your love and prayers, and she told me they could get him in on Thursday at 1:15.

I thanked her over and over and then listened as she gave me instructions for everything I'd need to bring to the appointment. You know? I've got to say something about what I think might be unique to a small town. So far every medical person I have talked to have treated me like I'm legally able to be given Thomas' health information. Granted, I'm doing all of the talking while he remains virtually mute and they know I'm his caregiver but I guess I expected at some point someone was going to deny me my ability to speak for Thomas. It is, however, a HUGE reminder that I MUST get legal paperwork drawn up A.S.A.P. to handle Thomas' medical and mental health stuff.

Needless to say, this is all good news so far.

Today, in an hour, we will see Thomas' primary care provider so hopefully she'll be able to tell me SOMETHING. At the very least about the health of his wounds and how I can properly care for them. I am grateful for this appointment. So, I need to close this post for now and go wake Thomas and get ready for the appointment.

I will write again tomorrow.

Monday, January 18, 2016

AN UPDATE ON THOMAS

Hello everyone. I wanted to check in with everybody because I have gotten multiple personal inquiries about Thomas and I. I know that I have been away from blogging for a long time but there have been a myriad of reasons for it that I won't go into in this post. I know you all wonder and worry about Thomas and I wanted to give you a short update. He is doing pretty well mentally and that shows itself in his growing vocalized sense of hum...or and the fact that he sings AT THE TOP OF HIS LUNGS to his favorite songs. He's truly a joy to be around right now in that respect.

Unfortunately, though, like schizophrenia likes to do, it lulled me into thinking that all was right with the world. I operated in a world where, with Thomas, I thought we were moving towards healing. I'll admit I saw some worrisome signs when it came to the negative symptoms of his illness but I tried to keep positive and pray for improvement. Then last Friday happened.

Because of the delicate, personal nature of the issue with Thomas and because at this point in time I am unable and unprepared to write about what's going on with him while also honoring him and his dignity, I will have to keep some things vague. What I will say, though, is that he has developed an incredibly serious physical and medical issue that landed us in the E.R. on Friday. Because of the nature of the issue, the E.R. staff would do little for us and simply referred us to a surgeon.

That was it.

No useful advice for me as his caregiver, no medical supplies or shopping list for medical supplies, no nothing except for a piece of paper with a surgeon's phone number on it and urgent encouragement to call the surgeon Monday. Well, today is Monday, a holiday (the surgeon's office is closed), and I am now on day 3 of being a VERY UNEDUCATED "medical professional" learning from Google as I go along about how to take care of Thomas . I am constantly praying that I am doing everything right medically for Thomas until tomorrow when we will at least see his primary care provider and HOPEFULLY I'll get some counseling on how to take care of Thomas' medical issue in our home until we see the surgeon.

So, that is where we are, currently, and I am scared to death and feeling incredibly alone. I would like to ask you all to pray or send good, healing vibes for Thomas and for strength for me. I will do my absolute best to keep you all updated as the week goes on and I find out more information, get some guidance from medical professionals, and prepare for Thomas' surgery.

Thank you everyone!

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