This post may end up sounding mostly negative. The fact is, I'm taming it for public air... the reality has been horrendous to experience, and going on for months already. But don't assume I'm all Dolly Down about it. Of course it's overwhelming and stressful and often infuriating. But I love my family and am grateful for whatever time I have with them.
The infection keeps taking steps back. Apparently I'm allergic both the Invanz and picc line material. It was pretty obvious symptoms, that I couldn't function with. I've been on IV infusions for several months past the oral antibiotics that did me no good, I've had serious reactions to my medications, and have only managed to keep the infection from spreading... supposedly. I've had blood work show signs this may not be the case. Still waiting on approval from the insurance for the hyperbaric chamber treatments. It's my last resort for getting rid of the bone infection, they've told me there is nothing else. I never would have imagined a bone infection taking my life. It was extremely sobering to hear.
With all the Dr appts, I didn't have time to meet prospective aides. So we went even longer without an aide than I wanted to. Usually how it works. But finally got through enough appts that weren't doing me any good and moved on to a decent Dr. that is. This put me in the position to go ahead and get the aide picked.
But then the aide came super sick for two weeks... which they aren't supposed to do. At least not without asking. And definitely not without a mask. No mask, even though we have a box of 100 sitting here. I wanted to scream. I don't get people. Medically fragile. It's one thing to visit and use a mask and tell me, and us take the risk. It's quite another to decide on her own. I also felt like she was speaking down to Jace, something he doesn't need. There was an incident with extended family that does not understand regression, medically fragile, encephalopathy, seizures, autism, and several other things I won't get into. She used that situation to manipulate. Gag. So I fired her, but the damage was done. Having an aide is more trouble than it's worth, so I am not hiring a new one.
Shortly after that, we lost hospice for Jace. This turned into such a giant pain. Now insurance is refusing to pay for the medical equipment he still needs. Nothing changed, he just didn't get drastically worse. Odd thing is, he did get worse, but they ignored that and dropped him anyway. With the way it was done, I felt like they were punishing me, and therefore punishing Jace and our whole family as well. All because I checked the side effects of a medication he is on and because Jace was acting out over everything changing... the Dr was clearly angry with me for researching a tiny thing. Excuse me for being a real mom and caregiver to my son. smh
If you remember, this disease causes regression- both physical and mental. Aidan's physical regression took a dramatic nose dive first because he had no safety net like a tube and 24/7 oxygen. Jace has the gtube, so his body is holding together longer, but his mind is going first. As long as the medication is somewhat controlling his seizures, (he'll always have breakthroughs, and it gets worse over time- requiring med increases and changes) he can communicate better. But if we don't keep on top of it, he loses that too. His pain is out of control again. Our #1 goal for his care is to control the pain. His comp care Dr... I'm so disappointed. And just like with Aidan, the older he gets, the worse his autism becomes. But now I'm getting blamed for that. It baffles me how providers can be so unknowledgeable when it comes to such a common disability. It's exhausting and infuriating and down right painful to endure. For our whole family.
As time goes on, we find more and more of what I've felt all along to actually be true, and them to be wrong. Too bad they don't realize, moms know their children much better than they do.
I have all the components to the Aidan bear gifts for this year except for the bear themselves. So all ready to go. This year I decided to go with bags instead of baskets. I couldn't manage to get little herbie cars this time around, so I got totally different surprises. I'm really excited to be expanding on my idea... It's not just providing an Aidan bear this year, but some other activities that will provide entertainment for the children in PICU. And I already have bigger plans for next year that will hopefully get others involved, as people have requested, and help the parents of the child in the PICU as well.
I know there are so many worthy causes out there. I contribute to some, throughout the year. I won't stop doing that. Giving has and always will be part of what we do, by choice. Some of it others know about, some of it others don't. But this is what is close to my heart, because of Aidan. And the only reason I chose to share the fact I am doing it, is because it is associated with him.
I can't wait to share a photo, for the first batch! We have already given a few out to individuals that we know personally, that were in the PICU.
The infection keeps taking steps back. Apparently I'm allergic both the Invanz and picc line material. It was pretty obvious symptoms, that I couldn't function with. I've been on IV infusions for several months past the oral antibiotics that did me no good, I've had serious reactions to my medications, and have only managed to keep the infection from spreading... supposedly. I've had blood work show signs this may not be the case. Still waiting on approval from the insurance for the hyperbaric chamber treatments. It's my last resort for getting rid of the bone infection, they've told me there is nothing else. I never would have imagined a bone infection taking my life. It was extremely sobering to hear.
With all the Dr appts, I didn't have time to meet prospective aides. So we went even longer without an aide than I wanted to. Usually how it works. But finally got through enough appts that weren't doing me any good and moved on to a decent Dr. that is. This put me in the position to go ahead and get the aide picked.
But then the aide came super sick for two weeks... which they aren't supposed to do. At least not without asking. And definitely not without a mask. No mask, even though we have a box of 100 sitting here. I wanted to scream. I don't get people. Medically fragile. It's one thing to visit and use a mask and tell me, and us take the risk. It's quite another to decide on her own. I also felt like she was speaking down to Jace, something he doesn't need. There was an incident with extended family that does not understand regression, medically fragile, encephalopathy, seizures, autism, and several other things I won't get into. She used that situation to manipulate. Gag. So I fired her, but the damage was done. Having an aide is more trouble than it's worth, so I am not hiring a new one.
Shortly after that, we lost hospice for Jace. This turned into such a giant pain. Now insurance is refusing to pay for the medical equipment he still needs. Nothing changed, he just didn't get drastically worse. Odd thing is, he did get worse, but they ignored that and dropped him anyway. With the way it was done, I felt like they were punishing me, and therefore punishing Jace and our whole family as well. All because I checked the side effects of a medication he is on and because Jace was acting out over everything changing... the Dr was clearly angry with me for researching a tiny thing. Excuse me for being a real mom and caregiver to my son. smh
If you remember, this disease causes regression- both physical and mental. Aidan's physical regression took a dramatic nose dive first because he had no safety net like a tube and 24/7 oxygen. Jace has the gtube, so his body is holding together longer, but his mind is going first. As long as the medication is somewhat controlling his seizures, (he'll always have breakthroughs, and it gets worse over time- requiring med increases and changes) he can communicate better. But if we don't keep on top of it, he loses that too. His pain is out of control again. Our #1 goal for his care is to control the pain. His comp care Dr... I'm so disappointed. And just like with Aidan, the older he gets, the worse his autism becomes. But now I'm getting blamed for that. It baffles me how providers can be so unknowledgeable when it comes to such a common disability. It's exhausting and infuriating and down right painful to endure. For our whole family.
As time goes on, we find more and more of what I've felt all along to actually be true, and them to be wrong. Too bad they don't realize, moms know their children much better than they do.
I have all the components to the Aidan bear gifts for this year except for the bear themselves. So all ready to go. This year I decided to go with bags instead of baskets. I couldn't manage to get little herbie cars this time around, so I got totally different surprises. I'm really excited to be expanding on my idea... It's not just providing an Aidan bear this year, but some other activities that will provide entertainment for the children in PICU. And I already have bigger plans for next year that will hopefully get others involved, as people have requested, and help the parents of the child in the PICU as well.
I know there are so many worthy causes out there. I contribute to some, throughout the year. I won't stop doing that. Giving has and always will be part of what we do, by choice. Some of it others know about, some of it others don't. But this is what is close to my heart, because of Aidan. And the only reason I chose to share the fact I am doing it, is because it is associated with him.
I can't wait to share a photo, for the first batch! We have already given a few out to individuals that we know personally, that were in the PICU.
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