The Little Things

Today I wandered down the hall at school, into the other wing and through the the 2nd grade pod (Bean's pod) toward Bubba's classroom. My "reason" to stop was to double-check that he would go to aftercare after school today. The real reason -  I was able to get a big squeeze in the middle of my day. He has that way of making you smile no matter what. He has always known so much more than anyone gives him credit for and he is sensitive to what people are thinking and feeling. I am so blessed to have him in my building where I can get to him in less than 2 minutes if needed (ok, maybe faster ya'll have seen how I walk!), but also trust him to be happy at school where he wants and needs to be.

 So "How is Ayden?" -  Ayden is at school and I am back at work, when it is in session. 

Nessa Bean and Bubba 

 Ayden is still seizing daily and they are becoming more pronounced. Enough that Nessa actually celebrated, "I can see the seizures now too!" When I was choosing to ignore it at the table the other day Nessa spotted it with excitement. That has taken a bit to get used to, but what a blessing to have another set of good eyes on Bub. She wants so badly to understand all this sometimes and she is truly excited to feel like she finally sees what we are talking about.

Cleveland advised to change nothing, do nothing, and just call them in a few weeks. As you can imagine doing nothing was not on my agenda last week when we spoke to them. After that call last Tuesday, I set up an appt. with our local Neurologist on Friday. She was the first neurologist that started solving Ayden's epilepsy mystery in 2009 after one very bad misdiagnosis. She is our local neurologist and has been right on each time in her opinion of what will or should happen. We didn't start with her this time because we originally went to Cleveland to meet with our neurosurgeon, not our neurologist. We had just visited in September, I say visited because when he is healthy and doing so well that is all we really do. She was so excited to see him growing and learning and we even talked about taking him off his final medicine this spring. Needless to say she understood our concern and in her words "He has made too many gains to risk regression due to the frequency of the seizures". She said she would talk to Cleveland and was sure our team there would have no problems with her addition.

 He has almost completed a week of the companion medicine and it will take another 3-4 weeks for it to be at the right level. Do we see any improvements, no, but we would not expect to see any until the dose is where it will be long-term. The positive is we have yet to see any significant side effects with this one and usually EVERY med has some side effect with Bub, so that is good. Now, it is back to waiting and hoping that maybe trying this will help. Maybe we found the magic medicine that will work and we won't have to worry anymore. Right now, we will choose to focus on the little things...Sis's celebration of her new found skill, Bub filling a bathtub full of balls while I am doing the laundry, or a little voice hollering "Close it!" - meaning mom I am ready for bed(closing his safety bed) then walking in to the picture below...lol! 

After his bath tonight he stocked up for bedtime

As long as he is sneaky, sweet, and smiling then I guess we all should be happy too. It is the little things that we can enjoy right now while we pray the big things will go away. :)

Quality of Life

This is not the post I hoped to share and it has taken me awhile to figure out what to say in the simplest form.  Why did we ever consider disconnecting the right hemisphere of Ayden's brain? Why did we ever decide to remove his right hemisphere? Why didn't we exhaust all of the other options first???

Quality of Life

When Ayden started seizing a few months after his stroke we increased the medicines he was on to control them. When the side effects were too harsh we switched meds and found some peace with where he was. We did this to stop the seizures, and offer the best quality of life. When the seizures increased and seemed to come from nowhere we spent a great deal of time "playing with meds". We have watched him regress and make gains only to lead back to baseline. We have always done EVERYTHING we can to offer Ayden the best quality of life. We will continue to offer Ayden every chance to make gains and we will do everything in our power to avoid regression.

When we met with the neurologist yesterday he said they were ready to send us home. They were confident that they had everything they needed to confirm that Ayden is seizing again. The movements/jerks we see are sharp spikes, but he also has small spikes happening in the background. When you have done all you can do, tried so hard, and battled for this long against "S" word it is not easy to except that the seizures have returned.

So now what? We wait... 
His seizures are not life threatening, they never have been. The times when his life has been in danger have been when the HSV flared or when he has had hydrocephalus/encephalitis. Knowing that those issues are not concerns right now, we wait. Our team at Cleveland will let us know what they think we should do. While we wait, we collect data that will answer the questions of how many seizures per day and if/when we see regressions. Currently, he seizes a handful of times each day and we have seen some minimal regression in gross motor.

Perspective

Before his first Hemispherectomy, Ayden spent a greater part of the day seizing, it became such the norm that we just calmly said "It's ok Bub" and waited for them to end. I don't want to get anywhere near that point again and hopefully those days are behind us. 

That is all we know. 

On a very bright note Bubba was elated to be at school today. After being stuck in the hospital for a few days with electrodes glued to your head you would be too! :) 

Mission Accomplished

In an attempt to stay positive I will start with the positives of the day:

• No seizures were recorded last night from 9 PM on. He also did not have any episodes during that time.
• Throughout the day and night we were able to get a lot of episodes recorded for evaluation tomorrow.
• We moved to the epilepsy unit so we are much more comfortable and in a better place for the veeg.
• Bubba has been a trooper - We had a battle last night with the leads, but today he has tolerated his stats checks and he had the best blood draw I have seen in a long time! 
• We worried about the move upsetting him, but he really took it well. 
• We can find comfort in familiar faces and appreciate that even though it has been a year and half since our last visit they remember Bubba - just a lot smaller version. One nurse who was on maternity leave for his redo and revision in May/June 2012 remembered him from his shunt in 2010. (Again, as she said a smaller version but he still has the eyes.)

Yes, I know the fact that a unit of nurses as busy as they are remember us may not be a good thing, but it is comforting in some strange way. Tomorrow we hope to have an idea of what they saw or didn't see. Our goal for this admission was simply to get at least one of each of the types of episodes recorded. That means the mission is accomplished in our book. Time to head home tomorrow. Dr. Lachwani said he would call us after he takes a look at everything on Monday. the neurologist on staff suggested we stay until then, but we certainly have other plans. We have what we feel comfortable with accomplished and need to get ready for the week at home. We tried asking our doctor Friday about the what ifs and he reminded us to take it one step at a time..."So what if its NOT seizures?" is a the question left unanswered for a few days. We will get the on staff neurologist impression tomorrow, but will wait until we hear from our doctor to make a plan. The benefit is if it is an at home adjustment our cc neuro works very well with our local neurologist in Ft. Wayne so hopefully it will be a team effort.

For those of you that have seen Bubba sleep you have to laugh that it is midnight and despite being asked and moving him three times from his burrow of blankets and pillows for a the best video Bub is still sleeping like Bub, and I am going to sleep now too!

Waiting...

We met with our neurosurgeon today and he did not see anything that concerned him. Instead, he called our CC neurologist to come and meet with us. After talking with him he set up an admission today. We did not plan on staying the weekend and we shared that, but he really wanted to catch the movements now. He wants to get the episodes on video/eeg to help figure out what we are seeing and then we can figure out why. Unfortunately, the epilepsy unit is full this weekend so we are on a peds floor with a little portable unit. It reminds me of his first VEEG at Parkview years ago. Tonight wasn't bad because they didn't get him hooked up until 9pm so Bub was already exhausted and fell asleep shortly there after. Tomorrow may be rough because unlike the epilepsy unit where the camera can follow you around the room we have to pretty much have him sit in front of the cart. I am hoping he is in the mood for an iPad snuggle day...we'll see.
Positives, the shunt seems to be working properly, Ayden still seems very healthy other than the tired eyes and lack of energy.

We saw 3 episodes before he was hooked up so we hope he will "perform" for the camera tomorrow so we can get home. From there the team will hopefully offer some answers for us after they look at everything, our neurologist also recommended a follow up MRI to keep an eye on things. Thank you all again for your thoughts and prayers.

Questions and Answers

This is what we know and honestly it is not much. Many of you saw the post on Facebook about "cerebral edema". It was meant to reach out to our fellow hemi parents for advice and clarity. Thankfully, we have had two incredible mommas helping to translate and ease our frustrations a bit.  I cannot express enough how thankful we are for the extended family we have through the Hemisperectomy Foundation. It was a long evening Monday and has been a long week for us, but to explain we will go back a bit and catch up.
Ayden has been loving school and making great gains in Kindergarten, we have even dabbled in potty training! He has taken a natural interest in books and his conversational speech is coming along very well. After school he can tell me some things about his day and he has really been growing up. We are so proud of him! I haven't posted much here because we all stay pretty busy and I even contemplated ditching the blog as the months have passed because I am so bad at updating it.
I never wanted this to be a bad news blog, but when things come up writing and explaining here instead of individual conversations, texts, and messages makes life easier for us all.
Several weeks ago Ayden starting some strange behaviors, he complains about his head and ears,  he is getting angry and biting at times, and then there are some movements (seizure like) that we have tried to ignore and shrug off. He is just growing, its the weather there must be a front moving through, and all the classic ideas we hold on to when we want to ignore reality. The reality is Ayden has started seizing again sporactically for the past few months and now within the week it happens mutliple times a day. The drastic change this week along with additional sleepiness and clinginess alarmed us and put us on high alert. Monday he vomited for no appearent reason and was fine afterwards...To an outsider this sounds pretty simple childhood stuff - The kid threw up so what? Probably just didn't let his lunch settle or has a bug. Not Ayden. I worried about a shunt failure so we rushed to Parkview and called the our pediatrician, a man we have only seen 2 times in his office over the past 2 years. Truly, Bub doesn't get sick and we always wait it out over rushing anywhere with him if he does. A CT was ordered and we headed to the pediatrician and WAITED... that is pretty much what we are doing now. The CT didn't lead anyone to believe there is hydrocephalus or that the shunt was failing, but something "concerning" in his left hemisphere was found. I never so badly wanted my kid to have an ear infection, but he was clinically healthy. Because he was "healthy" we have to ask why his head is hurting and he is seizing at an increasing rate. If he were a typical epileptic child we could play with medicine; we might get his levels checked to see if it has dropped, do a blood draw to find another cause like infection, call our neurologist to see her or change something medication wise. None of that was done, because it doesn't work for Ayden. I remember the relief in the face of our neurologist when she found out we still had surgical options in 2012, because in her words the medicines have never really helped. While our pediatrician offered to admit him and do a spinal tap to rule out the HSV flaring up or meningitis, he also knew that I didn't want any of that unless it was really neccessary. He and the ID team at Cleveland decided neurosurgery needed called. We left Monday with the doctor's cell phone number and an agreement to bring him in if we changed our minds or worried.

 And so that is where we are at currently. We have an appointment in Cleveland on Friday with our neurosurgeon. We don't have any answers...We have watched a perfectly "healthy" little boy wake up just a few hours later status, lost in a constant seizure, four times in his little lifetime. Twice it has been the HSV and twice pressure on his brain. It is this fear that terrifies us and the idea of losing any part of our healthy little boy to seizures that is driving our efforts this week. Again, we don't have answers so we can't tell you anything...There is no scoop. Bub is still smiling, still laughing, still playing, and otherwise HEALTHY. So "How is he?" and "Is he feeling better?" are questions hard to answer. Prayers for answers and signs to help guide the doctors in the right direction. Afterall, our son doesn't run fevers or show clinical signs of illness even when he battles some of the worst. What makes him special his raised eyebrow, silly smirk, and his dancing that is what we plan to enjoy now while we wait. We hope to have some answers on Friday and prayers are all we can really "do" right now. Again, we appreciate the concern that people have shown. Prayers are appreciated and never taken for granted.
The Hoffmans