I have had a hard time finding the words to describe Philip's appointment today. To say it was hard is a understatement. I think I was not mentally prepared to hear what we heard today. Then again, maybe that is best.
As I listened to the Dr talk today I felt my heart just crumble. I felt scared and sad . I was sad to watch my son sit across from me and know he was hearing the same words I was. I wanted to go hold his hand , but he is a man know. Or so he says. He will always be my baby boy.
The Dr was very nice and very concerned about Philip. Both of those things gave me a sense of relief. I wanted the Dr to care and it is clear after out 3 hr appt, he cares.
The MRI showed a issue. Due to the fact that this issue was found almost by accident . The scan only showed part of the issue called a syrnix. This is something that can be very dangerous for someone like Philip. because to fix it requires Brain / Spine operation. And due to the fact he has a shunt on the side that it is...would mean moving the shunt. His shunt can not be moved because it was moved last April due to infection. The right side has way too damage to put a shunt. And when he had the shunt in his spine it caused nerve issues in his legs. So....I am not sure.
Philip will be having a special scan JUST to look at this issue. That is important.
The next issue is Philip has developed a weakness in his left hand and his left foot. This was found on the Neuro exam and is not a good thing. Due to the stroke on his right side. He depends on the use of his left side. Of course I knew about the pain and the burning. But not the weakness.
The next issue is. The Dr is worried this could be a condition that is scary. It is a degenerative disorder . When he said this I said..well can we fix it. Remind me to never ask such a question again in front of my son. The answer is NO. And then Philip asked how we would treat it. The answer was pain management. Humm..that is not the fix we wanted to hear.
Due to some other issues we need to do a work up on his nerves controlling his respiratory area. Some of these issues can cause problems there. Where the syrnix is..it can cause a problem with that area. It can compromise the respiratory muscles.
We also have to be very concerned that the mass in the brain stem is growing and causing a issue. We will be looking at that also. The mass is a big concern because the surgeons think it could be very dangerous or worse to try to remove it...or we would of already. The mass is in a very dangerous area and surrounded by major blood vessels. This is also the same place that he had the stroke before. And the last time the DR try to get to the mass they could not.
So the appt ended with a game plan.
A script for percett 10 mg 2 pills every 4 hrs. And pain patches. Until we know the cause he needs to be off all other nerve type pain meds. We do not want to mask anything. I hate he has to be on such strong pain meds. And yet I would never want him in pain. Wishing we had a balance. Well I need to say I will pray for a balance. Will you all join me in that prayer?
The game plan is a hard one.
Three MRI scans to be done stat.
MRI of the Brain
MRI of the Tspine with and without contrast
MRI of the Brachial Plexus
Follow up asap next week.
Now one issue is every scan effects his shunt and causes it not to work. It deprograms the valve. So we will need to address that also.
Tomorrow I will get started on getting all this done.
So now I will explain my title. I am just tired. As a mom I want to fix Philip. I want to feel like I am able to help him. I miss him being small and being able to protect him from hearing the words we heard today.
I trust God. I am NOT mad . I am NOT disappointed in him. But I will admit ...I do not understand what in the world he is trying to get from me. What does he want from all this? I am just a little spiritual worn.There are no more tears for me to cry. I would love to come here and say something else. But after tears all day . I am just worn. Blessed to have my son. Blessed to be his mom. Blessed to have the sweetest most brave young man as my role model. But worn a little.
Tomorrow will be a better day. It just has to be.
Appointments start at 8:30 am. So it will be a busy day for Philip.
I just need to say....I really thought we were looking at a pinched nerve in his neck. I had no idea that things were so "complex". So I will need time to digest this and all will be okay. Cause it just is going to be..