John is now working. Like any parent, he will pay for utilities, food, clothing, and living expenses, but There are medical bills previous to Medicaid that need to be paid for Brandon. Although the surgeon removed 2 brain tumors from Brandon successfully...he will require close and constant follow-up by Pediatric Neurology Specialists not available in Michigan City. One of the brain tumors removed was thought to be the cause of the seizures but the specialists did not wish to stop the seizure medication at this time. With the continued medication comes all of the side effects of weight gain, mood swings, and the inability to concentrate at times. and then there is also the constant blood tests. The specialists hope to test Brandon in the future to be able to remove the medication under close medical supervision; but that cannot be done here. Then there is The Other Brain Tumor. This Tumor was unexpected, pre-cancerous, and if just ONE tiny microscopic cell escaped surgery..... there is the possibility of the tumor reoccurring, growing, and turning into a serous Brain Cancer. This requires lifetime frequent follow-up and testing not available in Michigan City since an enhanced MRI for children and Pediatric Neurology Specialists in Brain Tumors are only as close as Indianapolis. Also the Chemical Burn to Brandons left eye that he received in surgery also is requiring constant follow-up and is greatly complicating his recovery. As of today: His left eye is red, itchy, swollen, and painful at times, has severe light sensitivity that stops Brandon from going outside to play, requires very dark glasses and a hat to travel in a car, go to school, or sit in a bright room at times. This complicates school, his recovery, and his overall well being. There are frequent headaches related to the light sensitivity that effects his school attendance. Then there is the psychological reaction from his surgery. Although he was prepared for brain surgery as soon as we expected this would happen...Imagine being 9 years old, waking up after surgery in an Intensive Care Pediatric Burn Unit, with a hugh headache, severe left eye burns, 3 IVs, a urinary catheter, strapped down, and lots of machines beeping. Brandon was sedated with large amounts of morphine for 2 days due to severe pain from his eye damage. He suffered through a severe allergy reaction from the required IV Steroids after brain surgery to control the brain swelling. Although he has coped with all of this...I am sure one day he will want to and need to talk about all of this. Then there is school. The teacher is a great lady who is very committed and concerned about Brandon, But this is her first year with Brandon. She is still learning his needs and only had about 5 weeks with Brandon before surgery. Like any public school class....she has many students, little staff for the class size, and since this is a Special Education Class, there is a lot of distractions with mental, behavior, and medical problems within the actual classroom for the staff to deal with that prevents standard classroom teaching. Students range from very low functioning to high functioning which prevents group teaching. Each student is at different levels of learning and ideal situations need individualized teaching which cannot and will not happen. Actual learning time varies for Brandon depending on the classroom behaviors. Brandon deserves individual instruction to make up for all the education he lost due to misdiagnosis. Brandon has actually started to read and write in the past 2 weeks for the first time ever!!!! Brandon was lucky and the brain surgery minimally affected his motor center with was immediately located next to the brain tumors. His motor skills ( walking, balance, movements, speech), seem unaffected. His vision was greatly affected from the chemical burn; for this reason physical therapy and occupational therapy were ordered for balance & strength. Once again the school attempts to do this....depending on the classroom distractions which are frequent. Pediatric therapies are only as close as South Bend....which requires missed school time, and travel expenses again. Last, transportation. I am not saying that John and Gena will go out and buy a car on Brandons money...I am sure John will do his best to keep good transportation from his earned income from work as he can. The trips to Indianapolis and South Bend do require safe and reliable transportation. Brandon simply cannot take the bus to Indy. My car has been used for this transportation, but I do need to go back to work soon and need my car for work. The additional expenses of Brandons treatments have prevented John and Gena from being able to save money & afford reliable and safe transportation. (Not to mention other expenses like car insurance, etc. My car was severely damaged the day of Brandons surgery while sitting inside Rileys Childrens Hospital Parking garage. The person who hit my car left without reporting the accident and left me with a damaged car and a $500.00 bill for repairs since I had a deductible on my car insurance.) There are a lot of things that have happened, and will continue to happen with Brandons care. We will continue to push for the best care and results that we can possibly obtain. John and Gena are proud parents who have not shared their private complications in Brandons care. They are not asking for anyone to become involved or help unless they want to. If you feel that help is not deserved or needed, THEN DO NOT HELP---BUT DO NOT BE NEGATIVE OR CAUSE BAD FEELINGS PUBLICLY ON FACEBOOK. My children and grandchildren have been through enough.
Posted on: Fri, 22 Nov 2013 02:02:32 +0000
Trending Topics
Recently Viewed Topics
© 2015