Wednesday, March 31, 2004

I just don't get it.

There are so many people out there who simply want to downplay my son's condition that is rather sickening.

First is my son's pediatrician. She always thinks my son can just be cared for 'anywhere' by 'anybody', even tricky and downright dangerous surgeries. Yes, why make sure Nicky gets approved to see the EB experts at Stanford where he can be treated with respect and care by a staff that knows everything about EB when there are so many people down at LA's Children's Hospital that can operate on him that have never touched, let alone seen an EB child? RIGHT!!! Thank you so much Nicky's pediatrician for never having the best interest of my child at heart. You have no idea how much I appreciate it... NOT@!!

Then there are those that feel that I am 'overwrapping' my child. Oh really? This is based on what? Is it possibly based on the fact that your child is less severe and can handle not being wrapped? Maybe your child is severe too, but you just like to see your child completely covered in scars? Who are you to tell me what to do? My Nicky could not handle being unwrapped. The Debra Nurse told me I am doing a great job, and supports wrapping. If I was to keep Nicky unwrapped, I would not be surprised if Child Protective Services would come to my door after I sent Nicky to school to take Nicky away from me. Yes, that is because that would be child abuse, plain and simple.


Tuesday, March 23, 2004

I am so mad right now I could spit nails.

Nicky's g-tube fell out on Saturday morning and I took him to the ER. Because of my son's fragile skin, the ER was not able to transfer Nicky to any hospital because every hospital they called either did not have a Pediatric GI on staff, or refused to take Nicky due to his skin condition. The tube was put in originally at Stanford, where the EB clinic is located.
I think the most devastating thought to me at the moment is that the insurance/medical group is just totally denying Stanford for Nicky, and yesterday morning I was so upset I was ready to scream. I took the ER's sheet to Nicky's pediatrician with all the 'refusals' and basically told her that they had no choice but approve Stanford, but, NOOOO. She told me that there was no way they were going to approve Stanford and the only way I could EVER go there is if I *MOVED* in the Stanford's area. AARRGH!! Oh Really? I told her. How come when I lived in Arizona they approved Stanford? How come when I lived in California City they approved Stanford?
She had no come back so she told me that if this would have happened to her child she would not have taken him to the local hospital's ERs but she would have taken him to the Los Angeles Children's Hospital's ER ~and~ if I would have called her office, the DR on call certainly would have told me to drive the hour and a half down there instead of the local hospital. OH REALLY? Well lady, I DID call your office, and the Dr on call DID NOT tell me to drive down there. She had no come back for that one either, but I was so mad that she was treating me with absolutely NO respect and treating Nicky like any other child that I vowed to either prove her wrong and make her look like a total idiot, or drop her and change pediatrician. After all, she is not acting in the best interest of my son. Period.

SO.... yesterday I spent the next 8 hours in YET another Emergency Room (not counting the driving time), this time at the Los Angeles Children's Hospital. The pediatric Dr that took care of Nicky had taken care of 3 other RDEB children before so I felt more at ease. Because Nicky still had a very, very tiny hole, they were able to squeeze in a very small tube. Their plan was to slowly increase the size to the normal 14 french. Instead, after their best efforts, the biggest they could manage to put in was an 8. An 8 is still pretty small, but big enough to do the night feedings. This tube, although working good, is only a temporary solution until they can put a regular mic-key back in. However, not only her, but two other Pediatric ER Doctors and two RNs were just baffled that the insurance/medical group is denying Stanford for Nicky. So.. they wrote a script for Dr Castillo to finish up the job and do a dilatation to put back in a 14 french. They did not feel there was any Pediatric GI at that hospital that could properly care for Nicky, and, even so, the only one that would 'possibly' be able to do the job has no openings until JULY!!! Will the Pediatrician put the referral for Stanford to do it? Probably not, and that's where I can call the medical group, the insurance and whoever I can to let them know how she is not properly caring for my child and by denying Stanford continuously she is also endangering my son's life. I am telling you now, I am so upset with her!! Nicky's dad told me (jokingly) that he will go see her with a gun. I will no longer take her BS. That's it! I've had it!!!

Like EB is not hard enough to live with, the only thing I ask if for my son to be able to go see the specialist, why do I feel like I am asking for the moon? AARRGHHH

Friday, March 19, 2004

How bizarre is this?

I just love American Idol, so I am on the chat board for that show. Someone made a comment that one of the contestant had more of a ... ghetto attitude than the other contestants. Some got upset at this comment and came to the conclusion that this person making this 'ghetto' comment was a racist. Geez! That is not what ghetto means at all. To me ghetto, like I explained, is more of a general term for people that have a lower income, lower middle class basically. I was blasted for that, some people said it was 'offensive'. What the heck is offensive about being lower middle class? I was just making a statement, stating how things are, and explaining what the word meant into a broader sense, I was not trying to offend anyone! I think the original poster meant 'ghetto' as another way of saying 'urban', the people that grow up in lower income neighborhood pick up mannerism and attitudes that are simply different than those that grow up in Beverly Hills for example. There is nothing bad or negative about that, is just how things are. Some people need to stop being offended at every little word! Good flipping grief!!!

Tuesday, March 16, 2004

I haven't updated my blogger in sometime... my little one keeps me busy for sure!

This past week one event that really got me all upset was the way I was treated on a certain soap's message board. It is unthinkable to me how fans of a specific character... a character that has so many faults and has so much baggage, her virtues are literally non-existent... like to make their heroine (heroine? Please) look 'better' (which is a feat in itself) by 'trashing' all the other characters. Characters that for the most part are really good! But this heroine's fans need to bring up stuff that supposedly happened a decade or two.. (or four!) ago just to make these other characters look bad end up looking like total losers themselves. What a pity. Why would anyone want to defend a character that has no morals nor values is totally beyond me! Oh well! Whatever!