Mr. Cranky Pants

Yesterday Jace finished off the day with 8 episodes! Not an improvement at all. The neuro team was aware of this and we are hoping to see an improvement with this last increase of Banzel. Right now JB and I have little faith in this drug. So far this morning he has had 2 episodes and a few times he had some staring spells - we are not sure yet if those are seizures or not.

We broke the rules a bit last night - Jace hadnt really be outside all week. We strolled around the hospital and decided to go check out Memorial Hermann Park across the street! JB went and ran over there earlier tin the morning and said was beautiful!

Jace checking out the ducks!

They really increased the Banzel last night and it made my sweet Jace turn into Mr. Cranky Pants! He was babbling something and I honestly think we could interpret it they would not have been nice words at all!

He continued to be cranky this morning so we went for a little walk around the hospital and when we finished that he went down for a nap (only reason I am updating right now).

We are waiting for my mom to get up here. JB and her are switching off again so JB can go to work this week. When she gets here JB and I am going to eat lunch and watch the game at Buffalo Wild Wings. We need to get out and it will be nice to spend some time with my sweets before I don't see him all week.

I must go check on my laundry - Thank God they have washing machines for the parent's clothes up here. Otherwise I am sure us parent's wouldn't be so welcome! LOL

Prayer for Healing

Father, You created Jace. You formed him. You knit his inward parts in the womb. You alone know how to make what is right in Jace's body. You alone know how to heal Jace. As his Creator, I pray that You would grant healing to Jace. Let Your power envelop him and bring the healing that is needed (Genesis 1:26; Psalm 139).

Oh, and I Must Add

Dr. Slopis said we are NOT going home without this resolved!

I am so glad someone is taking this seriously!

Unlike his neurologist we had been seeing who has not once called or stopped by to check in on Jace. Her nurse has been here but that is not NEARLY the same as the actual doctor caring.

A Plan of Some Sorts

The incredible neurologist we met here, Dr. Slopis, is unfortunately not one we can transfer to. He works at MD Anderson with the pediatric cancer patients. He does rounds here only a few times a year. I believe it was a blessing to have had him as our neurologist during this hospital stay. God does cross our paths with others for reasons. He suggested we transfer to the epileptologist that has been reading Jace's EEGs. She is actually who his neurologist normally passes you off on to when the seizures prove hard to control. With Dr. Slopis' help and advice we are going to transfer to the epileptologist smoothly without having to deal with Jace's neurologist we were going to before. It breaks my heart that we can't use Dr. Slopis BUT I am very thankful we are not having to see him because of a cancerous brain tumor! The fact that he recommends the epileptologist weighs a lot and I hope he is right about her.

After speaking with Dr. Slopis, we feel like we understand the plan that the neuro team seems to have for Jace. We are currently on Banzel and have been increasing the dosage all week. Tonight we will increase it to the max amount that can be given for his age/size. We will see how he does over the rest of the weekend and then do another routine (20 min.) EEG on Monday. If they see no improvement on the EEG then we will try another medication, Vigabatrin. This is the medication that comes with the risk of peripheral vision loss (small chance over long term use). We want the EEG on Monday to show the brain settle back down and show only a focal area of activity. Past EEGs showed that the area of Jace's brain that has the tuber (left frontal lobe) had abnormal brain waves. The latest EEGs show the activity dispersing all over the brain, or what they call generalizing. We hoping at the very least for the Banzel, or the Vigabatrin should we have to go to that next drug, to suppress the whole brain from firing off and slow it down to see that there is indeed a focal point coming from the tuber. If this is the case then we would discuss the possibility of surgery. As scary as it can be, surgery may be the answer to becoming completely seizure free. If that route is taken, Jace would have to remain on medication for a period after surgery to be sure there are no more seizures and then eventually weaned off, never having to take them again! We were told that if surgery was the route we would have to take then it would not be a long drawn out months of anticipating. It would be something they would prepare him for within just weeks. The only issue the neurosurgeon would have with Jace could possibly be his size. Dr. Slopis thinks his size would be appropriate for the surgery. The anesthesia is the concern but with Jace being "wide", as he put it, is a good thing (that's a first LOL).

The neuro team is pretty positive about Jace's prognosis at this point. For a 36 hour period of time he was saying words he had stopped saying, he was waving bye bye correctly, and was just coming back to the Jace we lost slowly over time. They said the fact that he is doing this stuff that seemed to have been lost means that he hasn't actually "lost" it - its just not able to come out with his brain fritzing the way it has been. They said that it will take a few days of no seizure activity to really see him come around to being himself. I can't wait for that day!

Dr. Slopis also discussed with us about the two roads we may be traveling with Jace, either Infantile Spasms (IS) or Complex Partial Seizures (CPS). Complex means a change or alteration in consciousness and partial means that is coming from a partial area of the brain (or its focal). We would ultimately want the CPS road taken. At this point the IS road is not what we are traveling. The EEG would show hypsarrhythmias and right now it doesn't. Unfortunately, IS can start out as partial seizures but then progress to them. Normally they start out as IS and that is just what they are.  At this point we do not know what road Jace will take. Neurology is so unpredictable. I wish it was a simple diagnosis, straight forward treatment and an easy to determine prognosis. Having the unknown of how much Jace may have been affected or how he will be affected is the hardest part of this. He is so young and he can't tell us anything. The only way we know if he is in a seizure is by an EEG, besides the head drop episodes.

Starting at 3 am this morning he started with his episodes again - every 2-3 hours apart. Its so hard to see your baby going through this. The tears are the hardest part - he doesn't cry but gets tears in his eyes. He gets very agitated with each head drop, tears up, and is overall fed up with them. He even starts to pinch, grab and squeeze anything he can get his hands on....I have the bruises to prove it! And when he's not trying to pinch, grab or squeeze, he attempts to bite something......when I am holding him that just may be my shoulder - OUCH! He isn't doing any of this on purpose per se but out of frustration. The poor guy is really affected fully by his episodes.

Today has proven to be a bit difficult for me emotionally - I am doing a pretty good job at keeping it together so far. But, I think I am reaching my limit of holding it in and being strong. I can't break down and fall to pieces. I have to be 100% to advocate for Jace and make the right decisions or make sure the doctors are making the most appropriate decisions.

Besides the medical stuff, I have other stuff on my mind as well. What do I do about work? I can't just leave Jace at the hospital. What about the financial part of all this? So far this year we have reached the max out of pocket and that amount is a very large number. How much am I making life difficult for those helping us out? I can't just expect someone to care for our dog and home for extended periods of time when they have their own homes and lives. Then I worry about JB's feelings and trying to be there for him as well. I can't expect him to not have feelings about all of this. I hear his fears and they are legitimate and so I can't necessarily help him feel better about them. I can't make promises that Jace will be fine and go on to a regular school, play sports and not need any help. I can't promise that he won't either. Are people annoyed with the updates? I worry if I should even update the blog.....I don't want to come across as wanting attention. I want to be able to get the info to family out easily and most efficently. I do feel better after typing out what we have been told and I seem to understand it more once I get it out on "paper."  All this stuff crosses my mind and most of it is just ridiculous. I know this but its how I feel. Anyone in this situation would feel similar...I think.

On a positive note, Jace's "eye boogers" were better today. He didn't wake up with his eyes all crusted closed. I am praying that is the last we see of the crusty eyes.

I am hoping Jace naps a bit longer - I would love a short nap right now as well.

Still Think it's JUST Eye Boogers??

Guess what Jace woke up with? His eyes crusted shut! I dare the doctors to tell me they are just "eye boogers" again. I can tell the primary care doctors do not want to deal with me. They made their rounds early in the morning before Jace was awake and when I did mention the eye stuff to one of them she literally acted like she didn't hear me. I need to say something again - I am starting to lose fight in me, either from being tired or from really being more concerned about the seizures and getting his medication right. Can't wait for JB to get back up here and let him be the bad guy for a little bit.

So I snapped a quick picture of Jace acting like a monkey while changing rooms last night.

We were moving pretty quickly so the picture is blurry but you can see he is standing on his monitor and hanging on to the rails - like he was surfing! LOL

Jace was ALL smiles yesterday at dinner!

I LOVE this FACE - even when its covered in chocolate!

Today some co-workers came up to visit with us. They brought us lunch and visited for a while. Its nice to talk to someone else here besides nurses and doctors. Thank you Ranjita and Ida!

Since Jace slept in so well this morning (not like he had a choice since he partied all night long) I got to take my time showering. My mom brought my razor up here to me and boy was I thankful. I was starting to feel very....ummm.....European! LOL

Ok - on to the serious stuff now. Jace's last episode was yesterday at 12:40 pm until he had one this morning after playing in the playroom and then had another one after lunch. 3 hours apart exactly. Oh how I wish these would just be done and over with already.

The neuro team made their rounds and explained that the EEG yesterday still showed seizure activity. The only good news about this was the light induction test didn't cause Jace to have a seizure - its nice to know we don't have to look out and avoid strobe lights or poorly working florescent lights for the rest of his life.
The team was discussing what they wanted to try and the neuro who was in charge today (not the same as the one from earlier this week) said that Banzel is very new. Not much has been documented on it about toxicity. All I do know is that we are not going to push the limits when it comes to increasing his dose. I am only willing to go to an amount that seems reasonable for Jace's age and weight.

I am running on little sleep so I think I will end the post here and if I forgot anything I will update again later!

Going Crazy......

It's 1:30 am and Jace JUST finally fell asleep!! Why?

Anyone that has children know once they are overtired they are impossible to settle. I am now wired (only reason I am updating this late) from fighting with him to get him down and from being beyond annoyed that the nurses wanted to "play" (because he was so playful and alert). Grrr.....it took everything in me to not say something rude (they were such sweet ladies) and ask them to please do whatever it is that they need to do and let him get settled down. Changing rooms is enough distraction but to do it in the middle of the night is a whole other story.

We did not see the neuro team today after the EEG. JB said that Jace had one of his episodes right in the middle of the EEG - this is great since we wanted to see what was going on when he had an episode. The primary care team did stop by and tell us that the EEG didn't show any difference from Tuesday. However, the neuro team will be able to explain this better to us, hopefully tomorrow (or well today since technically it is Friday). The good news is Jace went from having 11 episodes a day to only 4 today!!!! His last episode was at lunch today. Since then we have only seen a few moments where he had the blank stare on his face that he normally gets before going into the head drops but they never progressed into the drops. It seems that we may be headed in the right direction but we shall see. He has had the tendency to have a good day followed by the next day being terrible. I believe prayers are being answered and we found THE medication he needs to battle these seizures. The the blessings begin to pour in. I believe prayer - especially specific prayer! I pray that Banzel works, and as Jace gets bigger it continues to do the job without having to increase his dose and never having another seizure with in the allotted time before we can wean him. I pray we wean him off the medication and the seizures, worries of delay, and any other scary issues are a thing of the past! Please pray these with me in the Lords name!

JB went home again tonight and switched off with my mom. He is going to work tomorrow but will be back up here if we are not discharged. I know Jace misses him. Jace is so tired of me and he is getting to that phase where Dada is who he wants. He was all about Mama for 12+ months - Its Dada's turn! :)

Speaking of JB - I have to give him the credit for being the original pushy parent and giving me the courage to be pushy as well. I have always been the type to trust the doctors and go with whatever it is they chose to do or try. I always thought that having a doctorate degree meant A LOT! Until recently I never fully understood the term "Practicing Medicine". Doctors practice - so much of the medical field has the potential to be very subjective. Knowing this helps me to realize that JB's pushiness and skepticism is valid. It has rubbed off on me - especially when doctors go against my motherly instinct. I could not compete in this fight without JB on my side. He has been invaluable in this journey. He calms me when I need to be calm and he lights a fire under me when I need to pick it up. Thank you My Sweets!

So, to clarify some things that were recently asked - we are at Children's Memorial Hermann (CMH), not Texas Children's. We were in Texas Children's Hospital (TCH) back in January before we had a neurologist that we regularly went to. His neurologist practices (there is that word again LOL) here at Children's Memorial Hermann. After being here at CMH - I have become slightly partial to all the UT MEd Students. You all know we are HUGE Texas fans! Not only are the Texas athletes good but so are the doctors! :)

The main differences of here vs TCH is how the hospital is set up. TCH has special floors for certain types of patients. All the specialties have their own floors - CMH does not. Scheduling for tests at TCH is a nightmare, even for the very young that get top priority - at CMH when you are scheduled you typically get the test done close to the scheduled time (especially if it requires the child to eat nothing before hand). The service in the cafe and such is MUCH friendlier at TCH than the cafe thats associated with CMH.

BIG sleepy sweet cheeks

Jace's favorite napping spot!

So far Jace's eyes have not become worse...they are still goopy but they are not bad yet. If I were at home I would not go to the dr yet for them. I may have used the drops I have at home since I already (still) have them from the last go around with this eye crud.

Well I think this is all I had to say - I am tired so its difficult to think straight. I am finally wound down enough to try to lay down for the night. I am curious to see how late Jace will sleep considering he has NEVER been up this late (I must say he was in a a great mood for being up so late).
Wonder if I will be able to get to sleepy without the Veggie Tales Silly Songs that are stuck in my head.

GOOD MORNING NIGHT!

Moving...

It's 11 pm and they want to move Jace to a less critical area. I only obliged because Jace once again won't sleep! This new nighttime burst of energy had better stay here at the hospital. Going to bed at midnight won't work at home - a schedule is crucial in our lifestyle.
So here I am packing up all the whole room to set up again. I just hope the room we are in is NOT a tiny room.

Hope to See More Improvement

JB and the nurse just took Jace down for his EEG this morning and I hope they see more improvement on it! We may not get a report on the EEG until WAY later this afternoon or tomorrow morning. While they are down there I am cleaning up the room some then showering but first I wanted to update while I had the chance to.

Jace did a little better with his episodes. He had 8 total yesterday and the last one last night was at 5:30pm. He didn't have another cluster until 6 am this morning (that we could see). However, he also slept much better once getting the Tylenol. With him waking up and falling back to sleep less often at night helps since transition in and out of sleep can cause seizures to fire up.  We thought they were lessening but Jace started with another episode at breakfast time, which was only a little over an hour and a half since the last episode. This time between his head drops he was shaky. This certainly new so we are going to keep an eye on that. What breaks my heart the most is when these episodes make his eye tear up.....this morning he had actual tears rolling down his cheeks. :(

We will get this all figured out. I have faith that we will!

We can use all the prayers possible! Share the story with your prayer circles please!

"Pray for one another so that you may be healed, the effectual fervent prayer of a righteous man availeth much." - James 5:16




I need to at least vent about this....as I am sitting here posting this I over hear the primary care team discussing Jace. Now these are the people that think Jace needs to go home but have to deal with neuro going over their head to keep him.
I notified the nurse last night that Jace was still having goopy eyes (this night nurse has been our night nurse since being here) and has seen the goop. She then notified the night doctor who came in and checked his eyes. His eyes were not nearly as bad as they are in the morning since we have recently cleaned them up and he had a shower. Anyway the nurse called the night doctor again about Jace's cough that was waking him up.
Anyhow - the primary care team was about to make their rounds to Jace when they realized that Jace was gone for his EEG. I over hear them discussing him and the night doctor said something about me being "something" (didn't catch what she said) then she said she was even called in twice - once for eye boogers and another time for cough. Grrr......I didn't ask for you to come I just wanted the nurse to note that we were dealing with this stuff and we needed to keep an eye on it. If his eye progress to the extent they did last hospital visit I will be tempted to say something. And Jace does have a cough which seems to really bother his throat. Just because he was not coughing and whining about it when you came in doesn't mean that it's "nothing". The poor baby is miserable at night.
I hate hearing how they talk about the patients and the parents. We know our children and your doctor degree couples with the 3 minute visit to the room doesn't make you know whats going on more than us parents.
Vent over....I am going to shower!

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!

Staying Longer

We are staying here longer - the neurologist that is caring over Jace thinks that we need to see improvement before being sent home. I will complete an update shortly after Jace has dinner and bath.