Having a buzy Sunday Morning. Philip got up hurting really bad and needed some pain medication for his head. I am really ready for the headaches to away. We are about out of medications to prevent them. And we have figured out the pain meds do nothing much for them. In fact it is a hard issue because we found out that they can cause rebound headaches. So....we keep searching. And we will figure it all out.
The medications continue to be a problem for Philip. He is just unable to function on them. We have changed the schedule of them. We have cute back on them. We have even not taken the full dose. He just can not take them and function. I am not sure what we will do. There has to be a balance but we have not found it. We are not even half way to the dose the Nero wants him at yet. The main issue is in the morning. He can not get up or keep his eyes open. Maybe with time he can get more use to it. He has to have it to keep the seizures under control and his EEG looking better. His last blood level he was not where they wanted him to be.
So the big news not every Dr is sure of the path we should take with Philip. As many of us know that is not a easy place to be. So for now we will just listen and think and most of all pray for a clear path.
So just in case you are curious what the Dr are not agreeing about ..there are many things...but the big things right now is ...a serious operation. We have had this topic come up before but this time it is being pushed harder and it seems to be something that may need to be done sooner then later.
Some of the Dr want to take Philip to surgery and do yet another brain operation. They would open up the brain and place some wires and electrodes and seeing where the seizures are coming from . See what area that controls and maybe remove that part of the brain. Scares me too death to even type it.
The Neurosurgeons say it is way too risky with the shunts and the risk of infections. The other issue is not just the shunt in the ventricles but the one in the cyst in the brain stem that they can not get to without serious damage or maybe even the risk of death. So they say no way.
I say give me a xanax..Not really. Well maybe some days I could use one. But if I ever started I might not stop.
I know many of you always ask where we could use prayers. Of course with Philip's medical issues. That is a daily request. I can feel the support daily and always on the hardest days.
Lately I find myself feeling a little frustrated. I want to fix things. I want things to go a certain way. I know everyone else does also. For example school. Philip has been at the same school for 15 years. Wow can you imagine that. That is a long time. Sometimes I have a feeling that people get use to Philip's issues . But you know what..We never do. It is a daily struggle for us. And even more important for him. I want Philip to go to school everyday. It is a sign for me that everything is okay in OUR world. Thank You Ms. Bailey for always answering me with a sweet voice and caring enough to ask about Philip. It means a lot to me.
Little things mean a lot to me.
For example he has a new teacher. She had no idea about his medical issues . She has called some days to just check on him. How nice to have her call. She wanted to tell me how she thought she could help Philip get through her class. Wow how nice. She came to me and wanted to help him.
Did I mention I love the little things. The little show of " We get it and we understand" How can we help?
So I have no idea what this next week will bring. But we will be happy that we are here together.
And we are blessed we have all of you.
