Going into day 5

It’s been quite a while since I’ve blogged. Sad cause I do feel better getting everything all out even to just me. But I hate… Hate being so negative! My last blog was in the middle of July. Right after I got out of the hospital. Soo much has happened and not for the good so I just hadn’t blogged. I actually haven’t much posted on any social media. Photos here and there. This and that here or there. But nothing to much. Like I said I hate being negative. I started for a while just writing in a notebook but sadly it didn’t last to long. I even got sick of writing negative crap! So it’s been over 3 and a half months. But as I sit here in the hospital with my son crying because there is nothing I can do, I feel like writing! To myself. People have been writing, texting, messaging and I truly am not trying to ignore anyone. I just don’t know what to say. ‘Thank you’ doesn’t seem enough. Thank you thank you. Billy has been writing  updates everyday and keeping everyone informed on how everything is going here at Stanford. I really truly hope everyone understands for my been MIA. 

I’m still not feeling great but it all doesn’t matter. I have to put myself on the back burner. Myself is not what matters my son is. 

Any other day, any other week we’d be jumping for joy that William isn’t having seizures but this week we just sit here waiting, sit here hoping for a cluster. 

After we got the MRI rules a few weeks ago and found out about the tumor, Billy posted this on Facebook. Nobody could explained it any better. I definitely didn’t have the word last to even tempt to explain. 

I know there are a lot of people that are worried about William so here is an update. 

As everyone should know, William has a medical condition called Tuberous Sclerosis, a form of epilepsy. He has recently been having more frequent seizures and they have become more violent and longer in duration.

Tuberous sclerosis (TS) is a rare multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. A combination of symptoms may include seizures, intellectual disability, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease.

William has annual MRI’s of his brain to monitor the formation and growth of tumors. Results of his last MRI have revealed significant growth to a known tumor he has in the right ventricle in his brain. 

The growth in the tumor is of concern because if it gets much bigger it could block the flow of spinal fluid from his brain to his spine causing a buildup of pressure on the brain that could have some dire results such as paralysis or even death.

We have met with Dr. Edwards, William’s Neurosurgeon from Stanford Medical Center. He is the doctor that performed the surgery on William’s brain in 2007. 

Dr. Edwards wants to get William to Stanford next week to work with Dr. Porter (a TS expert) and to do a few days of tests and Video EEG monitoring to determine what area of his brain is causing the current seizure activity. It is suspected that it is once again the left side as it was back in 2007. It is unlikely that the ventricle tumor is causing the seizure activity so he may have to have two areas worked on when/if surgery is needed.

There is a medication that shrinks the type of tumor (SEGA) that he has. This will buy us some time with regards to determining the cause of his increased seizures and if he will need to have surgery on two areas of his brain.

We will know more after next week when we are at Stanford. If I can get the insurance to approve the out of state hospital. 

In the meantime please keep William in prayers.

Jessica and I are pretty stressed out over all that life keeps throwing our way. We are going to do our best to honor commitments that we have made but would appreciate understanding if we have to cancel on anybody. 

We have so much love for everyone that has offered assistance and prayers

William got admitted Tuesday 11/3. We are going on the 5th day. Keeping him in a hospital bed, keeping him from having meltdowns, keeping him from pulling the probes off his head and keeping myself together so he doesn’t know a thing!! After 48 hrs if no seizures they cut his meds in half, the next day the took him completely off his seizure meds and it has been another almost 48 hrs and still no seizures. Weird because he seizes all the time and now…. We are here until he has a cluster and they can get data. Then 24 hrs seizure free. So we sit. We have to be awake the whole time. We have to document the seizure activity. Between Billy and I sleeping a few hours off and on we are beat! Physically and emotionally!! And I can’t get ANY coffee til 7am every morning. My shift to be awake is like 1am or 2am when Billy just can’t stay awake any longer. And I gotta wait til 7am for coffee! 

Thursday the doctors said he needed to check out Williams kidneys. With the TS he can get tumors on the kidneys. They wanted an MRI, but with the video EEG and all the probes….. Yeah they’d have to take everything off and put everything back on and.., it’s hrs long process. So first step an ultrasound. That worked! Sucky news he had tumors on his kidneys. Of course he does! The good news, if there is good news, they are small and there’s a new drug that hopefully will shrink them. And I say hopefully because all the research data isn’t in yet. Of. Course!

I can’t remember the last time William was not on seizure meds. It’s weird like he’s going thru with-drawls or something. Shaking Soo much,mad, laughing… But surprisingly awake more when he’s not sleeping more… If that makes any since! I just want him to seize so we can get him back on his meds and start a plan to get the tumor (s) gone and my baby better!!!! 

I don’t know…. I don’t know don’t know!!

Just hope everyone understands the last few months have been hell and I see no light at the end of the tunnel. What did I ever do in life? What did my poor poor baby boy ever do?!? Always always being told ‘you are not givin more that you can handle’ fuck that because I can’t handle anymore!!! Holding it together is getting harder by the minute!!!!!