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.

23 comments:

Grace said...

I know how difficult this post has been for you to write. TY for sharing so much of Philip's situation. I also know that the donate button is a difficult one to add, but a much needed one. Hugs for you all my friend!

Mari said...

Amy, thankds for sharing all this information. It's a lot for me to take in and it makes me understand even more what you as his Mom have to be dealing with. I will be praying for Phillip and hte rest of the family.

Shannon said...

My goodness, this is so overwhelming. And if it's overwhelming for me than I know it's much worse for you and Philip. I had to read this twice to take it all in and try to understand it. Some of it you had shared with me on the phone but wow, there's just so much going on.
I'm glad you finally posted it and filled us in. It sounds really scary. My heart breaks that you have to go through all this.

Aspiemom said...

I am so overwhelmed from reading this, I have no idea how you must be feeling.

I am in tears right now.

Thanks for taking the time to explain all of this. I know it was hard to write and it was time consuming for you.

I'll continue praying for you and Philip and your entire family. I've also had my S.S. class praying for you both.

Melissa said...

I honestly don't know how you continue to stand up under the stress you are holding. You really are an amazing woman.

I will be praying for you and your family.

bluesuede said...

I know when your are "in" it, you get through it just like you said. Somehow, you go into overdrive. But, to see it in writing is so overwhelming if you are well, let alone the fact that you are sick and trying to get through this.

Just know that I am always praying for you and your family. You are never far from my thoughts.

Vickie said...

I don't even know what to say....it's just so much! I am praying for you all.

Hugs...

Blissful Babe said...

My thoughts and prayers are with you, Phillip and your family.

Hang in there and don't forget to breathe.

xoxo

Liz (Loving Mom 2 Boys) said...

I did not realize the point things were at for Phillip. What a frightening time this must be for you all!! I am blown away by your ability to set it all out in such a clear and matter-of-fact way.

I am praying for you all right now (and always). Much love to you all!!

Liz

Jennifer said...

Amy, I don't know the difference between the two choices you have ...

What I can tell you is that Duke is a top notch hospital.

I know many miracles that have come out on the better side by going there. (IE: Tricia & Gwyneth Lawreson).

Sara Bonds said...

I cannot imagine going through this or having to watch someone I love go through it. I pray for your son all the time. I hate that you all have to go through this, mostly that your sweet son does. I wish our support was enough to magically heal him.

Hope said...

Wow, Amy. This had to be a hard post to type. I'm always fraying for your family! That MRI pic is sobering. You are such an amazing person. Philip is lucky to have you, as he knows you'll move mountains to help him. It takes an extraordinary person to shoulder this and you do it with courage and grace.

Rebecca Jo said...

What a fighter your son is! What a family you are to keep going through everything!

Prayers for ALL of you!!!

Charmaine said...

I read it last night and was so overwhelmed that I read it again this morning and just can not believe how much Phillip and his family has gone through and now I understand why you are so worried. I would be so worried too. So I will and am continueing to send prayers to have everyone I know send prayers.

Amy Dungan (Sparky's Girl) said...

Sending you prayers Amy! I can't believe all the complications... it has to be overwhelming and more than scary!
I know God will see you through, but I can only imagine how hard it is to deal with. Sending you love and hugs!!!
And don't you dare feel bad about that donate button! You are in need and isn't that what God want's us to do, help others in need? Donations will allow us to help you. So hang in there and know that you have an army on your side. (((HUGS)))

Eyeglasses & Endzones said...

I will have all of you in my prayers for the upcoming surgery. I can't imagine all the things that you and your family have gone through as well as Phillip. I am glad that you have added a donation button, I will use it for sure! Your love for him is seeping, and I can tell!

Meaghan said...

You are an amazing woman and your son is an amazing man! Your guest post is up and I just can't tell you how honored I am that you shared it with me!

xoxo
Meaghan

"FINE"al thoughts... said...

I will be praying for your family. Stopping by from SITS.

Rbarakat said...

Praying for Phillip and for your family. Thank you for sharing so that we can bless your family. (Found you through Sits)I do believe that God can do anything, so hang in there and don't lose faith!

♥ Becky ♥ said...

Amy,
I can't imagine how hard that was for you to write all of that out. And although I don't know you or your family very well, I can tell you are an incredibly amazing woman, who is an amazing Mom.
I will above all else pray for Phillip and you and your family. God will guide you all through this. I'm always on Twitter if you ever need to vent frustration or just need some uplifting words.
Hugs to you all ♥
Becky

Vivienne said...

Oh Amy! What trials you are all going through! I just signed up to "follow" you and will be praying for Phillip and your whole family. I will check out Brandy's site and do what I can to help.
xoxo

Cindy said...

My gracious. What a tough kid you have! I am keeping him in my prayers, and will be doing a post tonight to share your blog with my readers. I have found so much support with others who has the same disease as Reilly (Cystic Fibrosis). Blogging is a wonderful thing, and it's great to have this outlet.

Anonymous said...

Do you have any updates? I keep checking and have not seen anything for months - I hope all is going as well as it can.