Thursday, April 9, 2009
Our Long Road Ahead....Important Medical Post
This is my son Philip. This picture was taken not too long ago after one of his last brain operations. Philip has had over 17 brain operations , suffered a stroke, had over 25 orthopedic operations, suffers from slit ventricle syndrome, chronic headaches, Has multiple shunts, suffers from seizures and many other medical issues. We have been blessed that with all these medical issues Philip pushes himself to live as normal of a life as possible.
One day about 8 months ago Philip started to complain of left side pain. This was something new and something VERY scary. Philip suffered a stroke on his RIGHT side in the middle of his second brain operation at 6 months old. This operation lasted 17 hours and he coded twice on the table. It was a miracle he lived. Philip has depended on his left due to the damage to his right side. The new pain in his left side was something that worried us and the Doctors.
After months of DR appt, MRI, Cat Scans, Spinal Taps, Blood Work...it was decided that he is suffering from a degenerative central nerve disorder on his left side. He has already experienced weakness and lost of function in both his left arm and left leg. With the stroke and the multiple bone and muscle operations on the right side, this has left Philip is a really difficult place. Philip also has experienced severe burning and shaking with non stop pain. He has been seeing a specialist for almost 5 months now and tried many different medications. Including some pain patches, Extended Morphine, percecott, new seizures medications to try to help with the shaking , surgical epidural Morphone bolus directly into the spine. The list goes on and on.
A option we had considered was a deep brain stimulator. But after finding that Philip has a syrnix which is a problem with his fluid by his brain and cord that will require surgery if it grows in..the Dr felt this would not be a good option. It was also decided Philip's nerves in the brain were noted on the EEG to be slower on the Right side and that means with seizures he would not be a good candidate for this procedure.
So here we are months later and decisions have been made. The DR has spoken to the Neuro and the Neuro surgeon and the decision was made to do the more complex operation. The risk associated with this operation are many. But after many appt, alot of research, tons of 2 am sleepless nights and non stop prayer. The answer seems that this is what is the best chance for Philip.
A few medical facts....Philip will be having a operation in a few weeks. He will be having a machine and a pump put in. The pump and machine will go in his stomach. They will have a Cather and wires worked through his spinal cord and directed into his brain.
A few thing makes this more complex for Philip. The pump and machine In the stomach....Philip has had major abdominal surgery nuemours times in his life. He now has a shunt that runs down into his left side and drains into his stomach. The Cather of that shunt is on the left side. He has a large area of scar tissue on the right side due to a previous shunt on the right side that got infected and had to removed in a emergency operation. So there is a concern with getting the pump and machine in the stomach.
The Cather and wires in the spine. Philip has had multiple spinal operations. Including a LP shunt that was in his spine. When that shunt had to be removed the tip broke off and Philip had a pretty complex operation on his spine. So there is a concern for the pathway in the spine up to the brain. Due to this Philip will need to be woken up during the operation and asked some questions to make sure he can feel his arms and legs as they move up the spine. This is what scares Philip . The DR said Philip would need to shake his head do to the tubes and machines. I think Philip has worried most about this. I just can not imagine what is going through his mind.
A big worry is the extra fluid that the pump will put in the brain. There is a concern that the extra fluid from the meds in the pump could be too much for Philip's brain to handle. One factor that may help or hurt is he has slit ventricle syndrome and his shunt is set as high as it will go. So we will just have to see how the brain will react to the extra fluid. Only time will tell us the answer to that.
One last concern is...Philip does have shunts. When you have shunts you always have to worry about infections. Philip already has a issue with some immune due to a major shunt infection that almost killed him last year. The infection started in the shunt in the stomach and traveled into the brain. When you have a infection with a shunt you have to take out all foreign object...aka the shunt..and have a external shunt outside the body ..and weeks in the ICU. One added issue which is a BIG one is Philip has a old piece of a shunt that is stuck in scar tissue in his brain . This is embedded by the mass in the brain. The last shunt infection the DR said he was not sure Philip would survive a operation getting that shunt tube out of the brain stem area by the mass. It is embedded with blood vessels and is a very vascular area. He did tell us that IF Philip ever has a second infection we would have no choice but to remove the old shunt tube. This is the same DR that attempted to do it when he was younger. He told me that one day he might have to play miracle worker but not that day.
So by adding the extra foreign objects the risk of infection is very high .And if there was a infection it would mean everything would need to come out..even in the brain stem. In this picture of his MRI scan you can see the white line in the middle of the brain mass. This is the tip of the broken off shunt tube I am explaining about.
Due to this risk Philip will be required to be very careful with germ and his immune system.
Philip has two big appts and procedures before his operation. His operation is scheduled for May 12th. The Dr needs him to be weened off all his meds before then including some of his seizure meds. This is a long hard process for Philip and already is causing his problems. There is no way around this ...the operation can not be done with these medications in his body.
Philip will also have to wear a body back brace for 8 weeks after his operation to protect his back and spine. He will not be able to bend, lift , or turn.
Two things that are being addressed with the insurance company now...Philip is going to need some rehab to help with his weakness. This could be in patient and not local.
Philip also is going to be evaluated at a out of state hospital within the next few months. There are issues with his shunt, a brain mass with a broken off piece of shunt, seizures, reflux kidney issues that may require a transplant one day...but top of the list is the degenerative nerve disorder that is trying to rob him of his left side . We are looking at NC ( Duke) NY ( Sloan) Mayo Clinic. Medical recorded and scans are being sent to each center.
Many have asked what they can do to help. First and most important is to pray for Philip and his recovery. Without prayer we would be lost. I can not begin to tell you how much your prayers and support mean to our family.
Needless to say Philip's medical bills are far beyond what we can pay right now. With my medical issues and Jim'sjob worries. I am just so thankful we have insurance. But even with insurance our cost are far above our resources. Many of you have asked where you can send small donations to help. After praying about this and swallowing some pride. I have added a donation button to the side of my blog. Any money donated will be used for Philip medical fund only.
Once again..Please know our first need from anyone is prayer for Philip and strength for our family.
Posted at 7:45 PM