Sick again, or is it still?

So, we knew that there would be germs coming home from everywhere. School, me working with young children, possibly Joe (though that's less likely) the girls classroom. Ben has once again gotten another cold. Though, this one seems to be hanging on a lot longer. He has seen the pediatrician many times so far. The first time was because we got an email from the director of his school stating that roseola was in his classroom. Well, w took him to the pediatrician that day due to him having some congestion and being worried since one of the symptoms of roseola is congestion and a cough. The pediatrician said that it was not roseola, but just a cold. That was Aug 12.

When he had not gotten any better, about 10 days later, I took him back. Because he is immunocompromised, they decided to start him on antibiotics because it looked like his cold was heading towards a sinus infection and it was better to head it off sooner than later. They also started him on breathing treatment. We started doing a nebulizer 3 times a day. Oh man, he did not like that at first! We had to hold him down. Now, he will usually watch part of a cartoon while I do his treatment and sit still. But, he still tries to take it off after about 5 minutes, and tell me "all done!" It takes 10 minutes, so we can't just be "all done" after 5 minutes :) We also have followed up every 2-3 days with the pediatrician. Well, he is still sounding junky in his chest. So, we had a follow up again tonight. The pediatrician said he looks pretty good overall, but he still sounds junky and she would like his cough to be sounding better. So, now we are going to have an inhaler with a spacer to take with us when we are out and about and also possibly leave one with the school if he isn't getting over this cold soon. We also have to follow up again with the pediatrician in a week, once he has finished his antibiotic to see if he is any better. She is hoping once has finished the full course that he will be a lot better. I'm crossing my fingers. But, I'm unsure. I mean, if he has had almost a weeks worth of antibiotic in him and isn't better, well, how much better is 10 days worth going to get him? But, we will hope for the best.

So, needless to say, colds suck for this little guy! And as if that wasn't bad enough, not only did he get a cold and have a miserable time of it, he is such a giving little kid, he decided to share it with me. And, it couldn't just stay a cold, nope. I had to have it turn in to bronchitis and asthma exacerbation for me. Which came with it's own set of medicine's and medical bills. Luckily, the pediatrician said Ben's x-rays did not show any bronchitis or bronchiolitis, and she did not hear anything in him that would indicate such things. It also did not show any pneumonia, or an enlarged heart or anything like that. So, everything looks good on that end. He just can't kick this cold easily because he has a very low immune system. And, that will probably be what happens for the rest of his school days. One cold after another. Hopefully, when he gets over this cold he can stay well for a good long while! He has his biopsy coming up on Sept 12, and we need him to stay well so that we don't have to reschedule that.

getting his breathing treatment

Reaction to the news article about the GA teen denied a heart transplant

So, this article http://www.foxnews.com/health/2013/08/13/atlanta-teen-being-kept-off-heart-transplant-list-family-says/ has been all over the news and FB, and I am sure, twitter and any other media outlet, today. It's a sad story indeed. A 15 year old GA boy has been denied a lifesaving transplant. It appears his diagnosis is most likely Dilated Cardiomyopathy, from what I can gather from the article. It also appears he only has 6 months to live. I sympathize with being heartbroken and wanting to do anything and everything you can to get your son that heart. Really I do.

What I do not sympathize with is trying to put the blame on the doctors for not listing him. And, this is the part that has me a bit fired up! Yes, it was the doctors choice not to list him. But, not for the reasons in the article. And it was not due to race, bad grades or a prison record. No good dr, (and from what I hear, Children's Hospital of Atlanta is a really good hospital) would keep a child off the transplant list just due to bad grades. That is a ridiculous thought. Nor would they keep them off the list due to their race. That is also a ridiculous notion. If they were a current prison inmate, I can *maybe* see that being a problem due to there being so many cardiology visits. This was none of those things though. This was due to non-compliance. Current non-compliance with medicine. He has (most likely) dilated cardiomyopathy. He is most likely on many meds and sees a cardiologist.

The mother admitted, in a few other articles, that he was non-compliant with his medicines. The mother also states that they would not be able to go to the dr appointments due to not having a car. She also states that she thought that the dr's were afraid that they would not be able to afford the medicines. Now, the medicines can be quite costly the first 6 months or so. There are a LOT of them! But, from my understanding, you can usually work something out with either medicaid or another insurance plan. The pharmacy also sometimes has copay cards that help out with payment of the medication to make it cheaper.

The appointments are another thing. If you are not going to comply with either the medicine OR the appointments, then yes, they are going to deny you a heart. The first 3 months, there are quite a lot of appointments. We took Ben twice a week the first month, then once a week the second month, then twice a month the 3rd month. And so on. If she is already stating she won't be able to go to doctor appointments due to not having a car, and apparently does not have a lot of money (therefore a taxi is most likely out) I am guessing they would be non compliant with appointments as well.

Therefore, all these things together lead me to believe, that in fact it is not the teens grades or race that lead to the doctors decision to not list him. It was the teen, and parents non-compliance to transplant life. When you are listed you go through a series of interviews with a social worker. They ask many personal questions, they talk to you many times, they make sure you are mentally and emotionally ready for the life ahead. If you are not, you will not be listed. You go through interviews with a financial advisor. They make sure you are of financially stable and are set up with some form of insurance, whether that be medicaid or a private insurance plan. They make sure you are going to be able to pay for the medicines and be able to attend all appointments on time. If you can't, they may help you out to find funding to help pay for everything. If there is no way to pay for the transplant, you may not be listed. You also talk to a transplant pharmacist who will tell you all of the medications you will be on (or in our case, your child will be on) and make sure you will comply with that and that you will take them on time all the time and that you will come in for monitoring as needed. If you are not willing to do this, you will not be listed. Our transplant pharmacist actually told us, "90% of my day is spent counseling teens on why they NEED to take their medicine." You also meet with the transplant APN's on a daily basis to talk about any concerns you have.

ALL of these people are constantly assessing your ability to care for your (or your child's) impending gift of life. If you are unwilling to comply with all of the rules, then they will find someone who will, to give that very precious gift to. Every day 18 people die waiting for an organ http://www.organdonor.gov/index.html 119,163 people are waiting on an organ right now. The doctors that are looking to list new people on the transplant list are not going to list someone that has already been shown to be non-compliant with his medicine regime. And whose mom has said she would probably not be able to make it to all of his appointments. Here is one article, detailing what happens before you get on the transplant list http://www.ucdmc.ucdavis.edu/transplant/learnabout/learn_eval_process.html Based on number 11 and 12 alone, they would be ineligible, from the articles I have read about the family.

So no, this was NOT about race. It was NOT about bad grades. It was NOT about a previous prison record. What it is about, is the rules for transplant. You must be compliant. You must follow the rules. You must work with the doctors and take your medicine and attend all appointments. Again, I am very sorry that the family is facing such sad circumstances, and I hope the best for this teen. I hope that they are able to find something to help him live as good of a life as possible for as long of a life as possible. Hopefully even during this time he can receive medication counseling and they can put a plan in place to help him and his family so that he CAN get on the transplant list. But, until then, I wish the best for them.