Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"


Wednesday, October 28, 2009

Does it really have to be this hard...

So I am sitting here tears as I am typing this...I am so mad and so frustrated...I have been trying to get Caleb a H1N1 vaccine for weeks now and it's just not happening.

I wrote Shepard Smith with Fox news this will give you an idea of what has gone on:


Dear Shep,

I know you are a busy man, but I am writing you to see if you can help in any way. My son was born with two very rare syndromes, CHARGE and DiGeorge. The Charge effected his brain, heart, hips, ears (deafness), etc and the DiGeorge effected his immune system (this syndrome is one in which the child is born without the part of the body that creates the immune system). There is one place in the world that does an experimental transplant that after it grafts (which can take up to two years) will provide the child with an immune system. Our son spent two years straight in the hospital and we almost lost him a couple times. He is now three and he, myself, and my husband are a family again AT HOME. Caleb still has to live in complete isolation in our home, until his blood work shows his immune system is working. He is like the 'bubble boy'.



So his doctors at Duke suggested he get vaccinated to the H1N1 vaccine as he is in the 'high risk' category. I called our local health department weeks before to get him on the 'list' and the secretary said their was not such list and to just call back. I continually called back and got the same story. One of the mornings that I called I later got on our local news station's website and saw a news story saying that the local health department was scheduling the first immunization clinic. I then called back the health department and asked to speak with the administrator. He at first seemed like he was going to help me and send a shot to our local pediatrician so Caleb wouldn't have to go to one of those mass clinics. He then send he would send her paperwork and I should hear from the pediatrician next. Well after not hearing from the pediatrician, as I know they wanted to get him vaccinated as much as I do, I called them. They indicated they did not get any paperwork. By this time many schools in the area are holding mass clinics for children without pre-existing health conditions. Please don't get me wrong, I think it is great that other kiddos are getting vaccinated, just don't understand why my son who is in one of those '5 high risk groups' is not a priority. I called the health department administrator back today and he was nothing but rude to me, quite different from our previous conversations. He said he didn't send paperwork to the pediatrician, that she would have to enroll to be able to administer the shots then her application would have to be reviewed by the state. I then said that seemed like it may take too long and asked if I could just bring him down to the HD to get him vaccinated (which is not the safest of options) so he could get the shot. He then said after he took a bite of something and started eating on the phone, that I could bring him to a mass clinic for his age group at the health department. I asked 'could I bring him a little early to avoid the crowd' He said 'you can come early to get in line early' I was shocked at the lack of emotion. I called the WV Immunization complaint hotline and the individual I spoke with said that he was aware that after calling the HD (after getting another complaint similar to mine) that the HD explained that they were vaccinating some kids in schools because of breakouts. I totally understand that reasoning, but my son and a couple others fall withing CDC's guidelines....when did local authorities have the right to change government guidelines? Why am I fighting so hard to get my child, who should have been vaccinated first to get a vaccine. I couldn't even take my son to one of those mass clinics as the nasal form of the vaccine would be present and he cannot be around that. I am just at my wits end. I am scared. We almost lost our son to a very serious lung infection (another fact that the local health department is aware of) and the shot is there, yet I can't get him vaccinated safely?!? I have know become aware of other families in the area who have family members who are in the 'high risk' category too and can't get their family member vaccinated.
If you can help in any way I would so appreciate it
So I just got off the phone with the WV Immunization Complaint Hotline and so far nothing promising coming out of that either...
God Bless you all!!
God Bless Caleb!!

1 comment:

gram byrum said...

Your letter to Shepard Smith is well written and adequately covers your dilema. I hope he helps in any way possible. Just making it public would be great. What has occurred is criminal. God bless you sweetheart-keep the faith. You are a strong girl and you will get over this hurdle too.