Welcome Friends!

Brayden W.

Florida

Birth Date - May 6th, 2004

Main Diagnosis - chiari malformation, pseudo tumor cerebri, moyamoya disease, pediatric stroke

THEME:  Police and Marines

Quilt Deadline: 2/1/2014

Biography

In March of 2009 Brayden came home from VPK and fell to the ground with a horrendous headache. I immediately called his teacher and asked if he had his his head at school and she said no. Well over the course of the next few days these spells continued and I got very concerned so I took him to the pediatrician. She told me she thought it might be migraines but ordered a CT scan just to appease ...me . The CT came back that Brayden has what is called a Chiari Malformation (Arnold-Chiari malformation, or often simply Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing hydrocephalus as a result of obstruction of cerebrospinal fluid(CSF) outflow [1]. The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculatureof the brain. It can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases). We were refered to a Neurosurgeon who basically said his case is not very severe I will probably never see him again and sent us to a neurologist for follow up and conservative medication. 

Brayden began having the headaches again but this time he was having numbness in his extremities both upper and lower. The neurologist went ahead and ordered an MRI early as we were not due for one until October. The MRI revealed the Chiari had gotten worse and his brain stem was swelling and there was absolutely no CSF flow going to his brain. They sent us back to the Neurosurgeon and this is where the rest of the story begins. June 9, 2010 Brayden, had a decompression surgery to relieve the pressure and see if he could become symptom free. The went in under the impression he would be removing his C1 (1st vertebrae) and a very small portion of the skull. In hopes of restoring the fluid flow. However that was not the case. While in the operating room the surgeon used an ultrasound machine and noticed there was still no flow of CSF after removing all the parts he planned on removing so he started out by scraping out the 1st layer of the dura and still to no avail he ended up having to scrape the entire dura. By doing this it opens up windows of other complications that we are not looking forward to and praying wont occur. By doing everything our surgeon did today there is still very MINIMAL flow of CSF (but I guess some is better than none) he said today there was nothing more he could have done on this specific day because it just would have been to much for Brayden. He underwent another surgery in Sept of 10 and then contracted chemical meningitis he ended up staying in the hospital for 17 days trying to recover. 

3 mos later we went in to visit the NS and he told us we were good to go and we would see him in a year, Well 2 days later Brayden suffered from a stroke in the left side of his brain. I went round and round with the drs because they were denying that he had suffered a stoke and I had to raise cane to get an mri/mra done. Once completed they had my amazing pediatrician come in and tell me they had found a stroke and he needed more imagining. We were hospitalized almost the entire month of Decemeber and into January 2011. We were told the dr's here were baffled and they asked us to seek out of state 2nd opinion. So we set up a few big fundraisers and off to Boston we went. The dr's there were very helpful but due to financial reasons we were unable to keep care there. Well in May of 2011 we were introduced to Dr. Ricardo Hanel from The Mayo Clinic of Jacksonville. He told us Brayden had another brain disorder and this one was called MoyaMoya disease and Brayden would need another brain surgery called an EDAS they went in and removed a portion of his skull and they laid his temporal artery flat to the brain on his left side. Since then Brayden has had to have a titanium plate placed in the side of his head. He still suffers from terrible headaches and just recently we were asked again by the local dr to seek out of state opinion.

Our NS Dr. Heger whom we adore had recently relocated to Augusta Ga. I called him and asked if there was a Dr. there was a Dr. there who had enough experience to handle Brayden and there was!! We went up about 3 weeks ago and met with Dr. Elizabeth Sekul and she is amazing. She has done so much for Brayden in these last few weeks than he has had done by neuro here in 2 years!!! We have to make a trip up on Sunday 11/24 and we have to stay the entire week for testing for Brayden and the other boys. They are having some issues from their chiari at the moment. During the course of Brayden being diagnosed with Moya Moya disease and dealing with his stroke our sons Skyler, and Zachary were also diagnosed with chiari mallformtion of the brain and Zachary was also diagnosed with syringomelia. Skyler is considered what they call asymptomatic and is being closely watched by our NS Dr. Ian M. Heger. He is currently in the process of being tested for occult tethered cord sydrome do to some issues he is having. Zachary underwent surgery 1 week after Brayden had surgery for his MoyaMoya disease and he is still suffering from headaches and he is attending 4 months of PT for his leg pain and weakness, and speech therapy for some choking issues that are caused by his syrinx. Him and Brayden will be seeing a genetecist while we are in Augusta next week to see if they have some type of connective tissue disorder that is related to their chiari.

On Monday March 4th, 2013 Brayden was admitted to Wolfson Children's Hospital for a headache that he had for over a week.  We stayed in the hospital in Jacksonville for almost 2 weeks and we were then transferred to the Children's Hospital of Ga in Augusta Ga on March 15th, 2013 so that Braydens specialists could take over his care.  They monitored him for several days and then they did a Spinal Tap and his opening  pressures were to high, so on Monday March 25th, Brayden underwent his 5th brain surgery to insert a VP shunt into the ventricle of his brain.  What we thought would be a 30 min to an hour procedure turned into an all day affair and 2 days in ICU.  They had trouble during the surgery and it caused some trauma issues in his brain due a combination of things with his other issues and when he woke up he couldn't move the left side of his body.  He has made tremendous progress since waking up and being moved from ICU.  We thought he would have to go to inpatient rehab but got the news  4/3/13 that we just need extensive  out patient therapies at home for a while.  We went home with a walker, wheelchair, shower chair, a handicap pass.