I guess this will be a follow up to last week and Roaringmouse helping me by hooking me up with her friend who I hope gave me some good information. He suggested and made me think of a lot of things that I didn’t know. Also, recommended things to do which I will as soon as I can breathe. I also would like help with funding a oxygen concentrator for our home so that I don’t rely on a company.
The reason why I spoke to him to begin with was because I had received a letter from Florida Medicaid that said Nicole’s SSI was ending. I totally freaked out. I know that she needs this as she will never be able to hold a full time job and support herself because of her illness. We had help getting her the SSI and I made this decision to do this last year instead of waiting until she was 18 which will be this year. The hassles I have gotten are unbelievable. I should have just left her on the state kid medical program at least she wouldn’t have to keep switching doctor’s etc. I am second guessing my decision based on circumstances.
I spoke with Childrens Medical Services (CMS) and they told me on Friday that she would lose her SSI in April and I would have to reapply. I got a letter yesterday from SSI saying she would have NO benefits at all (check or insurance) in March because Rick made too much money. The only problem I thought we were going to have is the five-week months (March is one of them) and Rick and his brother worked that out so that he would only work four weeks and take off the fifth week with no pay. They had decided for March that he would work four days per week and than get a reduced pay that still adds up to what he would make for four weeks. Rick is all depressed and down because this is his fault, he’s defeated etc., and I hate it when he gets this way. He’s like woe is me and we never get a break etc. which I do to but I still have faith and hope.
I will not have a chance to call SSI today as I try to call them as soon as they open so I can get through and we have rehab this morning followed by an appointment with her cardiologist. I will have to call them tomorrow along with a half of dozen other calls. It seems if I’m home for the day I spend it on the phone and don’t get other things done like housework. Nicole has fallen behind in school because if I am not on her and hold her accountable she will not do the work. I haven’t had time to focus on this the last couple of weeks. I think that it is ridiculous that the government makes it so hard for chronically ill patients/caregivers to get help and services when they have all these others issues to deal with combined with the fact they are sick.
I took Nicole for a second opinion yesterday with a local PH specialist. Currently we travel two hours each way to see one. I have had reservations about her care there for awhile as he doesn’t want to do a catherization to see how well the drug therapy is working because it is too invasive (which is true). An echo isn’t an accurate measure of the pressures in her heart and pulmonary arteries. He feels that she is at the end of the road with her treatment and I WILL NOT accept this as an answer.
Basically, the doctor yesterday agreed that she would need a transplant and that the biggest priority is the control of her PH and this is more pressing that her heart defects. He also said he would be more aggressive and put her on IV medication which is pumped into her like diabetics use for insulin. There are more side effects, more complications especially with heart defects and air getting into the line, and more complicated procedures than her medication now which means she would need much more help than she does now. She would have to go in the hospital and get the line put in. This doctor I know personally and he has met Nicole and saw her as a favor even though he doesn’t take her insurance. He agree to do so but the question is will they cover it because he is out of network. It is a lot to take in and I’m not sure what to do.
I felt like I was prepared for this appointment but I wasn’t I didn’t expect him to suggest IV meds so now I have other questions which I really don’t want to ask in front of Nicole like, What if she stays on her current treatment? What is her prognosis before lung transplant against the IV? I don’t know if we should continuing seeing her current PH doctor or let her cardiologist (who has already agreed to do so) take over her care at least until she’s 18 and we can get the insurance issues taken care of so maybe she can see the local PH specialist. He also believes that her current therapy has worked but thinks that more aggressive treatment will help more. I am almost certain that her current PH specialist will not switch her over. He doesn’t know I went for a second opinion and this is the way I wanted it.
I’m so tired and weary of all these phone calls and decisions that I have to make and also Nicole has to make at such a young age. I don’t want Nicole to be sick and I want them to give her medicine that will make her feel as good as she can feel being so sick. I don’t want Nicole to die because a doctor is too conservative but I don’t want her to die because a doctor was too risky and/or I made the wrong decision.
I know I’ve said this before but I don’t understand why God has put me my family through this and he believes that I am up for this challenge.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
roaringmouse
Dear Jane,
As said before…it was my pleasure to help out and was happy to do it! He has asked me to keep him posted on you.
Only the other day…I learned of a website called accessible.org which handles grants such that you are looking for…but before I do that I would simply straight out call the American Heart Association and see if they already have a fund program for that.
Don’t let Rick feel that he is defeated. Instead he should feel empowered because he has that ability to make that choice and you both can work around that financial niglet…some just don’t get a choice. It’s a crazy one that you have to put up with…but at least you can control things to a certain point.
Maybe Nicole needs a creative incentive to do her homework. It sounds like your family likes to do everything together. In that vein you are a mini-company working on a project. Each member takes a piece on to help make the end result positive. Your husband gives up a week of work, you do the caregiving and paperwork, and her …the homework. If any one piece isn’t done then the other two become sad at the lack of success. Maybe using some sort of an analogy like that would help her and not have her rely so much on you to remind her about her homework. In the case of our 5 year old…we simply told her no computers/tv until after school is done for the day. (It’s devious…but it’s been very successful!)
Regarding the surgery/IV issues…have you called your insurance and asked for Medical Exception? When Greg needed emergency shunt surgery to prevent him from becoming a quad…the insurance company at that time said he didn’t need it as it was cosmetic surgery! No kidding! So the two highest neurosurgeons ganged up and wrote a letter…don’t know what it said…but the surgery went on. Perhaps the doctor can write such a letter.
I can’t begin to imagine being in your shoes, other then..it’s rough when you feel overwhelmed. For me..please take some breathing time and I’m praying that it all works out!
The Roaring Mouse
G-J
Jane, oh my goodness! I understand why you are weary. Do you get a chance to sleep?
Didn’t you say on the call-in show a couple of weeks ago that Nicole wanted a little independence? Maybe should could make a list of what she means, and then could earn those things by doing her schoolwork and homework independently.
Homework isn’t loved in our house, either, but it’s loved more than practicing trumpet!
ejourneys
I hope Rick can rise from his depression, so that he can be part of your collective strength (even in the midst of exhaustion and self-doubt, it is still strength). That might help with Nicole’s homework motivation, too, and give Rick a sense of empowerment.
I don’t know if you know about these, or if they’re useful:
Social Service Checkup connects people with discounts and community assistance programs.
Benefits Checkup allows people to find and enroll in federal, state, local and private programs that help pay for prescription drugs, utility bills, meals, health care, and other needs.
Healthcare.gov provides information about available private insurance plans, public programs, and community services.
Florida Agency for Health Care Administration administers the Medicaid program, oversees the licensure and regulation of health facilities, and provides information to Floridians about the quality of the health care they receive.
Share the Care, a not-for-profit organization whose mission is to provide community-based support for family caregivers in Orange and Seminole Counties. (I’m also in Florida, but we live outside the scope of the organization.)
*Tight hugs*
Denise
Hi Jane–When there’s so much to panic about it seems impossible not to panic. I believe in you, Jane, and in your ability to find the right answer. You are better than your panic.
Continue to take those steps forward and know we are behind you, ready with support, the whole way. Keep us posted!
Trish
Jane, You must be so weary from taking on so much and from having so many important decisions to make. You have strength and you do research and have contacts in the PH community so you can be confident in your decisions. You are a wonderful mother. Hang in there (and I’m reading the posts in reverse order so know that you had a good day recently! So happy for you!). Sending hugs.