Timothy was born with a cleft lip and palette, but that was the least of his problems. He also was born with tetralogy of Fallot with pulmonary atresia (sp?) a rare congenital heart defect, What makes his more rare than a baby born with tetralogy of Fallot is the pulmonary atresia which means a defect in the pulmonary artery. Timothy has over 5 defects in his heart, the only miracle that has gotten him to eights weeks old is that he was born with some collateral arteries that grew in on their own to help get some oxygen in the blood from his lungs. We knew about the defects before birth but things have changed since birth. First what little pulmonary arteries he did have are gone and the collateral arteries are not growing and couldn't be ballooned. Then we find out that the hospital that we have him at Wolfsons Childrens Hospital in Jacksonville Florida can't do the operation because of the pulmonary defect. And that there are only like two surgeons in the country that may be able to do the operation, one in California and one in Boston. Just the medical transport to California is like twenty thousand dollars and that's just for the baby. Not to mention the mom and dad and the grandparents, god knows we have prayed and put this in his hands but I believe god helps those who try to help themselves and since Timmy can't !
Timothy had his first surgery in California on 7/10/08. All went well. We had to schedule his second surgery for August 14, 2009. All was going well. Then it happened!! Medicaid sent me a letter refusing to let Timothy travel to California for his surgery. This petition is to see how many out there think it is dangerous to have the surgery in Florida, when he already had his first one done in California, and the Californias doctor wrote Medicaid a letter stating IT NEEDS TO BE DONE THERE. Please let us fight for our Timothy and give him a chance to get the medical attention he needs. All Medicaid pays for is Timothy and his hospital stay. We come up with everything else (hotel, airfare, misc.).
I am going to try appeal Medicaid but time is short we are supposed to be leaving on the 13th. Sign this petition if you believe they should over turn their decision!
Doctors letters I received!
Letter from Dr lacey
Timothy Brookshire is a 14 month old male diagnosed prenatally with tetralogy of fallot pulmonary atresia and major aorta pulmonary collateral vessels. Timothy has been followed closely in the newborn and infant period secondary to his complex congential heart disease timothy has had 2 catheterizations by Dr Robey English. His most recent cardiac catheterization occureed on 7/10/2008. I have been in touch with Dr Frank Hanley in Stanford California who is the leading surgeon with this particular type of complex congential heart disease. Dr Frank Hanley operated on Timothy on 10/29/2008 with a full cardiac repair. Upon discharge following surgery Dr Hanley requested that any follow up invasive procedures or surgeries be performed in Standford Calfornia In this rare complex form of congenital heart disease the children can develop restenosis of there MAPCA:Sthis requires balloon dilation in the cath lab. There is also the possibility that the findings of catheterization will require urgent surgery. Timothys Cardiac care is best served the institution where his surgeon Dr Frank Hanley is located should the need for urgent surgery arise during or after the cardiac catheterization.
Sincerely
Stephanie R Lacey

Lettter from Medicaid

Dear Dr Lacey
This letter is in response to your request for timothy brookshire to be referred to Dr Hanley in Stanford for cardiac catheterization. Medicaid has reviewed your request and has denied the out of state request
Medicaide reimbursement of out of state services is limited to treatment that is not available in the state of Florida. Florida medicaid requires a statement by a tertiary cent specialty physicaian in the specialty field of the recipients diagnosis. Tetralogy of Fallot recommending out of state are needed beacuse the recommended service cantnot be provided within the state of florida
Should you have additional information that timothy brookshire has already been evaluted at a tertiary canter and that the specific services he needs are not avaiable in Florida you may submit additional documentations to florida medicaid for reconsideration of the out of state request.
Thank you for the care you are providing this patient. If you have any questions please contact John Loar Out of state Prior Authorization Coordinate at 850 488 5546




Letter from Calfornia


To Whom It May Concern:



Timothy Brookshire is a 1 year old child with a complex congenital heart defect called tetralogy of Fallot with pulmonary artesia and major aortopulmonary collaterals. This is a highly lethal defect if left untreated with a high percentage of children dying by 2 years of age. The most effective treatment for this defect is complex surgical reconstruction of both the pulmonary arteries and the heart. Successful surgery can improve both the quality of life and length of life significantly. Although the surgical procedure is complex, when performed in highly qualified centers the risks of the surgery can be reduced substantially. At the current time, the mortality risk for the surgical procedure is less than 2\% at our center. Timothy has undergone complete unifocalization for his cardiac lesion here in October, 2008. A critical diagnostic test which must be performed in order to plan the surgical procedure and evaluate for any further palliation is a cardiac catheterization, which also should be performed at centers familiar with the above diagnosis.



The surgical plan, in general, involves reconstructing the abnormal pulmonary arteries, closing the defect within the heart called a ventricular septal defect, and then placing a prosthetic pulmonary valve which connects the right ventricle to the reconstructed pulmonary arteries.



Based on the natural history of Timothys disease process, and the outcomes that have been achieved with surgical reconstruction, it is clear that he will benefit substantially by having his cardiac catheterization at LPCH.



If I can be of any further assistance regarding this matter, please call upon me at anytime.



Sincerely,



Heidi A. Terwey PA-C