Saturday, September 29, 2012

10 Days Out

It's been 10 days since Ethan had his complete callosotomy in hopes of bettering his life. It will obviously be months or even years before we know how well it has really worked, and what kind of damage it may have caused. After the surgeon had come to tell us that surgery had gone fantastic, we waited outside the ICU for about an hour waiting to go back and see him. The anesthesiologists came out at one time to tell us that he looked great, and was moving his arms and legs. He hadn't yet talked. After waiting for what seemed like forever, we finally got to go back and see him. He looked significantly better than the horror picture I had imagined. He was awake, and had a zig zag incision that went from just behind his hairline to the middle back of his head. All things considered, he looked great! He was clearly happy to see us, though a bit out of it still. He couldn't quite get words out at this point. He was vomiting as well. For the first time in my life, I actually got nauseous and had to sit down and close my eyes. As good as it looked, it still wasn't pretty.

Just post op
His head right after.
Ethan was very tired, which is to be expected. He was not complaining of any pain, but went in and out of sleep. He stayed in the ICU to be monitored more closely. He continued to do quite well. He was drinking a little here and there. He was still vomiting quite regularly. Later in the evening, Mike had to leave to get home to Taylor. I wasn't to be alone for long though. My friend Heather, who also happens to have an awesome little boy with Doose, showed up. Ethan slept through the whole visit, but she brought him a gorgeous embroidered blanket, and even one for Taylor too! It's so nice to be able to chat with someone that completely understands every aspect of what life is like with a child with intractable epilepsy. She commented on how amazing he looked, and I agreed. His eyes were hardly swollen, when I had expected them to be completely swollen shut. Ethan's surgeon even stopped by in that time, at 8:30 at night, to see how he was doing. Keep in mind he had gotten to work at around 7:30 that morning, done a 6 hour surgery on Ethan, and probably had a whole day of clinic visits after that, and still made time to pop in to see him before he left for the day. I really love this surgeon!
His blanket, can't see the embroidery though:)
The next day he continued to do fantastic! He was trying to talk more and more. His voice was very shaky though, and it was clear he was having a hard time finding words. He could only get one or two words out at a time. He was still sleeping a lot, and vomiting here and there. He was keeping down more liquids though. His swelling was still quite minimal. He had puffy eyes, but that's all. He was doing so well that they removed his arterial line, and made plans to transfer him out of ICU because he didn't need that level of care! He was really doing so much better than what was expected. They finally got us a bed on the floor at about 9:00 at night. We got settled in, and he slept until morning!

The next morning he was doing so incredibly well, that we were told he could actually go home if we got him up and walking! This was a huge shock to us, it was only 48 hours after surgery. I had my reservations, but figured they knew best. A bit later in the day we got him up to walk. He couldn't walk without being completely supported, and he was more or less dragging his left side. None the less, the nurse put in the orders to discharge him. The surgeon from the floor was in surgery, and so wasn't seeing how he was actually acting. I knew he wasn't ready to go home, but I wanted out of there so bad that I packed up our things and got ready to get out of there. Upon me picking him up from bed and moving him into his wheelchair, he threw up and was looking pretty bad. The nurse said it was fine and hurried us out the door. He looked miserable on the drive home, and it was about 30 minutes from the hospital I realized the nurse had also left his IV in. Upon arriving home he just wasn't doing well. He was just laying there not moving or even responding. Then the vomiting started up again and wouldn't let up. We also noticed his stomach was quite distended. His normal "innie" belly button was protruding quite far. We called up the surgeon's office, and spoke with his nurse. She was outraged that he was released. It's hospital policy to not allow anyone to leave if they're vomiting, even if it's in the parking lot about to get in the car. They always have to come back and be monitored for a few hours. Besides the vomiting, he was simply in no condition to leave. She told us to get in the car and come back up, and she would have a room waiting for us so we didn't have to go through the ER, she was wonderful! So after 2 hours home, back we went.
During his 2 hours home, obviously miserable.
Waiting to get up to our room, just looking horrible.
They were able to get an IV back in him the night before, you know after the one he was sent home with was removed. It took 2 tries, and he was so out of it that he just laid there while they poked him. The next day he was still looking pretty miserable. He had fluids and anti nausea meds through the night, and he was still throwing up. He also wouldn't eat anything. I asked them to put him on a stronger nausea med, and that one seemed to do the trick, but it also made him very tired and unable to stay awake. Over the next 48 hours or so we were really just working on keeping his vomiting in check, trying to get some nutrition into him, and getting his bowels moving. That was the reason for the distended stomach. They took some x-rays and really bumped up efforts after seeing how bad it was. Neurologically through this all he was doing quite well. Every day he was speaking more and more, and was walking better. Physical and speech therapy started visiting him daily and working with him. These therapies will have to continue for some time as his brain and body heal.
Too tired from the meds to even think about food.
The next days he continued to get better. We tried to get out walking several times a day. He enjoyed getting downstairs to play with the toys, and into the cafeteria to get cookies and "red drink" every day! We were finally seeing him improving, and taking steps forward. He was still vomiting, but not as bad as he had been.
His daily snack!
It was finally on Tuesday that everyone decided he could finally come home. He was eating and drinking, talking and walking so much better, and just overall in better spirits! Have I mentioned yet that he hadn't had a single seizure either??? He was saying all morning that he wanted to go home, and finally around 11:00 the doctor came in with his discharge papers! Off we went!
He set in the wagon for an hour waiting to go home! He was ready, and so was I!
Since being home, he has continued to do better daily. His appetite is getting better, and so is his strength. He seems to be suffering from some type of depression. He's often just moping around and not wanting to do anything. He does have his moments where that happy bubbly boy shines through, and his behavior seems much improved since the procedure. He is also still seizure free!!!! I'm trying not to get my hopes up though because we know this surgery is not designed to eliminate seizures, just to try to control and reduce them. While his strength is improving, it's still not 100%. He jumped off the little chest at the end of our bed yesterday, and it was very awkward and he landed funny. He injured his foot slightly. He's walking with a small limp, and complaining of some pain. He has an appt on Monday with his pediatrician to check his incision, so she can look at it at the same time. If it gets worse before then, it will obviously be looked at earlier. He's enjoying preparing his own food, with our help of course. That's helping him eat more so we can get some meat on his bones! He's so very skinny. He's still more tired than normal, and is almost falling over mid day and needs a nap. That's perfectly fine, and after he's looking more refreshed. He's also sleeping about 12 hours at night, and seems to need every bit. The surgeon is one of the few that does not shave the heads of his patients. He does so to increase their self esteem, even though the process to close the wound is much more labor intensive. A week and a half out because of this, his hair is already growing over the incision and at least to me is hardly noticeable! It's healing very well, and there have been no signs of infection and the swelling is completely gone. So far everything has been beyond my expectations, and of course I hope it all continues to be so!
Eating a tomato he picked himself!
Snuggling with Mr. Jet Dog right before he jumped off the chest.

Wednesday, September 19, 2012

Surgery Day

I'll try to keep this updated as I get new info. They took him back at 8:30, we got to go back with him while they put him under. He was actually excited to go and not scared at all so that was good. He got to take hit blanket and his "battle force 5" cars. He didn't fight the gas, and drifted off easily. Surgery is expected to last 6 hours, until 230 or so. We should be getting phone calls every hour or so, so I'll update as it goes on.

12:30 pm:  Everything is going great, and they're getting close to finishing the actual surgery, but the process to close is about an hour. So as of now they're actually ahead of schedule, and we might be able to see him in ICU in about 2 hours!

2:00 pm: He's done! The surgeon said it could not have gone better! We're waiting for him to get up to ICU. 

Thursday, September 13, 2012

Big News

There is a very big event coming up in Ethan's future. After 13 failed medications, and a failed ketogenic diet, his neurologist gave us 2 more options. First was to put him on Felbatol, a rather dangerous antiepileptic drug used in extreme cases where several other medications had failed. We really didn't want him on it, but eventually agreed to try it. The dose is slowly increased over several weeks, while having bi-weekly blood draws to check for liver function. With every dose Ethan would actually get worse. It became very clear that this drug was not working for him at all, and he was actually sustaining head injuries from the violent seizures that would strike out of nowhere. Upon speaking with his neurologist about it, she informed us that she wanted to go forward with option number 2, a corpus callosotomy.

A corpus callosotomy is a type of brain surgery where the surgeon will go in and separate the bundle of nerve fibers, called the corpus callosum, that connects the two sides of the brain together. Certain types of generalized seizures, atonic and tonic clonic most prevalently, can be significantly reduced by having this done. These are the two most common seizures Ethan has, and they're by far the most dangerous. This surgery can be done two different ways, either by cutting the front 2/3rds, or the entire thing. The surgeon doesn't even want to mess with doing the partial. He feels we would be going in a few months later to finish it anyway so we might as well do it all at one time. Ethan went through a whole neuropsychological exam a couple weeks ago, and he will repeat the test a couple weeks post op to see if any areas have been damaged or altered in any way.

So we head back up to Denver Children's on Tuesday, the 18th for pre op blood work, a full physical, and a CT scan. The next morning he has the surgery so we'll be staying up in a hotel so we don't have to drive up at 4 in the morning! We don't know how long he will stay there. The surgery itself is about 4-5 hours, and he will be staying in the ICU for the first night. From there we've been told anywhere from 4-5 days to several weeks can be expected for a hospital stay. So far Ethan has showed that he heals very quickly, and is a very strong boy, so we're hoping he won't be in the hospital longer than a week or so!

 So that's our next big step, and if successful this could give him a big portion of his life back. Without the constant bombard of seizures he would be able to learn and retain information, have more typical relationships, and perhaps even play on the school playground without his aid one step behind him! Only time will tell, but we're keeping our fingers crossed!