Finally Feel Heard

Jace had his Banzel dosage increased today so it was a day full of naps for this sleepy boy!

He took a 3 1/2 hour solid nap! 2 1/2 of that was on me :)

The neurology team finally made their rounds to see Jace and the attending neurologist is amazing! We only met briefly Monday when we were admitted and he seemed nice then. Today, instead of standing up and talking to me (as most doctors do to make it seem like they are rushed) he sat down next to me on the bench in the room and took all the time I needed to have my questions answered with full explanations.

We may have found a new neurologist for Jace! He is a sweet gentle man.

The primary care team and neurology team were in a battle of either discharging us ASAP to avoid Jace catching something or staying longer for monitoring. The neurology team won - which is fine since Jace has already caught something! The neurologist came in and told me exactly what I wanted to hear and that we were not going to be discharged until we see improvement either by less episodes or a cleaner EEG (we are scheduled to have another routine EEG tomorrow morning). I was astonished that this doctor was not trying to shuffle us out of here; he understood my concern of possibly going home and dealing with the same issue that basically put us in here.

Since the idea of Jace having infantile spasms (IS) or clustered drop seizures was not quite clear we discussed this. Basically, IS has a very distinct EEG pattern, which Jace does not have, however you can have IS without this distinct pattern on the EEG. With TSC there is such a broad spectrum and so goes the same with IS. Put the two together and almost anything could have a chance of happening.

The EEG Jace had back in August showed that the left side of his brain was having abnormal activity. Well the 20 minute routine EEG yesterday showed activity on both sides of the brain. The neuro explained that since Jace is so young and his brain is still developing then there is a greater chance for the activity to change areas like that. I also asked if the Keppra or any anti epileptic drug (AED) could cause one's EEG to worsen or change. He said that it may not cause that to happen it could certainly influence it. Since AEDs are made to suppress areas of the brain that are over firing then it can easily make the other areas of the brain begin to overact. Finding the right drug and dosage is where the delicate balance of that chance of occurring happens. Also, since the episodes have seemed to increase since switching meds he helped to explain a possible reason for it. Being admitted the Keppra was quit completely and Jace was loaded with Banzel. Since the Keppra was still slightly in his system and the Banzel was in his system but neither were at therapeutic level. Seeing an increase in episodes was kind of expected and once we get him on the right dose then we should see improvement. My next question for the neuro tomorrow is "what is this right dose he thinks we will need and how long until we reach that goal dose?"

I felt reassured when I was told that the episodes that Jace is having are not damaging his brain. It CAN cause him issues with learning if its not under control. He explained this to me like this: The brain is like a computer. The seizures that Jace is having is not causing the computer to crash, however it is like booting the computer off and on. When a computer boots up or down, during that time no data can be put in. With a child at Jace's age every second he is learning something. So the fact that he is having 1-3 minutes of these 1/2 second clusters means his computer is booting up and down too much.

I was so happy to have this explained in this matter that was easy to understand. Also, it showed even though he didn't believe that any damage was being done he still felt with the same urgency as I that we need these controlled before going home!

We also learned that even though we have seen only one tuber on Jace's brain MRI that there is still a chance there are more to be discovered. The tubers are in the white matter of the brain which is not developed for a while. By the age of 2-3 brain's white matter is 90% developed. It is not until the white matter is developed that you can see a clear contrast on an MRI of abnormal vs normal areas of the brain. The chance of Jace having more areas that have tubers is still there. Having tubers is not a big deal - the issue is when they cause the seizures. In this case, there are times when some people can not get the seizures under control and have to opt for surgery. They would simply resection the tuber (lesion as it would be called in the surgery world) and it would stop the seizures originating from that tuber forever! We have a LONG road a head of us before we would ever consider surgery but we do know its an option out there and its proven very successful in TSC.

I think I have hit all the topics that were discussed with the neuro team today. Tomorrow I should have answers to a few more questions JB and I have come up with.

On another note - the primary care team has proven to know what they are talking about. Jace has picked SOMETHING up. Its pretty inevitable in a hospital when you are young and everything goes to the mouth still. You would think that the hospital rooms, beds (especially cribs), highchairs, walls, etc would be thoroughly cleaned and disinfected, if not sterilized, but I don't think that's the case. Jace got this gooey eye stuff after the last hospital stay and he has started with the yellow gunk in his eyes again. He also has started with a cough. He is GREAT during the day...once its bed time he starts with this cough that wakes him up and then he moans because his throat hurts. I am assuming it is his throat since tonight he hardly ate dinner. Normally he gorges himself and then wants more! LOL He has a VERY healthy appetite! Tonight he hardly ate and I put it off as being a side effect of the Banzel. That was until he started with the same issues tonight as he had last night - waking up every 20 mins. coughing then crying with pain. Last night we gave him Tylenol to see if it was a headache - I was at a loss since its been FOREVER since he was that fussy - and the Tylenol worked like a charm. Well when all this started again tonight I was confused as to why, if it was a headache the night before, it would only happen at night. After hearing him cough then whine/cry it hit me and realizing that he hardly ate dinner that his throat must be sore. The nurse gave him Tylenol and so far so good.

JB came back up to the hospital. He switched off with my mom and she went back to the house for Lil Bit duties. I have to say that my mom is great - she drops anything and comes to help when we need it!

Thank you mom....and dad for letting us borrow her! :)

Please continue to let the prayers go up!
Our God is our Healer and I KNOW first hand of the miracles still occurring today!
Pray that the medication works (so efficiently that 2 years from now he can come off the medication and never take AEDs again!), for Jace to be protected from catching any nasty germs while here, for peace and clarity for JB and I, and well.....God knows what prayers we have.
We love all of you and thank you for being there for us!
I know I would be a wreck without my friends and family reminding me of the Faith I need to cling to and to let go of my control. I admit that through all of this I have not been able to "Let Go and Let God." I almost feel ashamed to say that since I know my Faith has always been strong - its amazing the fear of losing control that you have when bad things happen to your child! I have truly hit a trialing time in my life that I know in the long run will only strengthen my Faith. I just have to constantly remind myself or have y'all remind me of the promises that God has for us!

"Behold, I will bring it health and cure, and I will cure them, and will reveal to them the abundance of peace and truth." - Jeremiah 33:6 

Well since Jace seems to be getting some restful sleep I think its about time for myself to get sleep as well!

Good night!