Devoted to Dominic: Brain Surgery, What???

Yes, we have been talking brain surgery with Dr. Arndt and Dr. Chugani. Dominic has been having seizures for weeks now. Sometimes a few a day, sometimes just one. The majority of them are at night, so there is a chance he could be having even more and we just don't know it. The last few weeks have been nuts. Besides the seizures, Dominic has been projectile vomiting every few days. He's currently on eight medications, so it's hard to know if it's one of them upsetting his stomach or something else. Over the past weekend, he was very lethargic and had some new sort of seizure. He also threw up Friday and Sunday. The neuro on call thought his sodium levels could have been too low, which is a side effect of Triliptel (one of his 4 seizures meds). We spent the afternoon in the ER getting a bunch of blood work done. Nothing came back alarming, although his sodium levels were low. The advice of the ER doctor was to give him pretzels to chew on...awesome. Luckily, we had an appointment with Dr. Arndt the next day and were able to sit down and try to figure out what's going on. Because his sodium levels were on the low side, we decided to lower his Triliptel and add Zonegran, another seizure med (similar to Topamax). He also let us know that he reviewed the MRI scans from Detroit and the swelling around his brain stem (which they initially thought was a brain stem stroke) was totally gone! Amazing news and yet another miracle. That pretty much proved the theory that the Vigabatrin caused the swelling and it was indeed reversible. Praise the Lord!

An official thumb sucker!

Dr. Arndt was thrilled to see how well Dominic is doing developmentally and because of that, he feels that if the Zonegran doesn't stop the seizures, we should pursue surgery right away. If the Zonegran doesn't control the seizures, this would be the fourth seizure med that failed. Usually failing 2-3 qualifies you for surgery, among other things. So, the brain surgery option is becoming very real. Dr. Arndt feels that the sooner the surgery is done, the better chance he has developmentally and he wants to preserve the progress he's made. The road to surgery is long - we would start with a 48 hour EEG (which we have scheduled on July 5th), then do a PET scan and an MRI. Also, depending on what they find on the extended EEG, there is a chance they would have to do an EEG where they remove part of the skull and put the electrodes directly onto the brain. This is the best way to find the exact location of the seizures. We're hoping we don't have to do that, but you never know. We were hoping to not have to discuss brain surgery either!


Starting to sit up

We had an ultrasound and saw the Urologist on Tuesday and got some good news. His kidney stones are about half the size they were. This is probably a combination of taking him off the Topamax and putting him on Bicitra. So, at this point no need to remove the stones and we'll go back in 6 months for another ultrasound. One thing to check off the list!

Below is a fun video of Dominic "talking". He's found his voice and wants everyone to know!

Using that right arm more and more

Besides the seizures and vomiting, Dominic is doing pretty well. He's happy and making progress in OT and PT. He can even "sit up" for a few seconds on his own before he topples :o) It's crazy to think that we may soon be pursuing brain surgery! Mike and I aren't sure how we feel about it, it's not like just getting your tonsils out, it's removing part of his brain and hoping the part that is left will resume the functions of the part you removed. There is a chance he could lose some motor function, but they won't really have a good idea until they know where and how much they have to remove. Because he has cortical dysplasia, where one side of the brain is malformed, there is a very low chance he will just grow out of seizures as he gets older. The surgery is the best option and will give him the best chance at development. He also wouldn't have to be on four seizure meds. There is an 80-90% success rate and most kids only have to be on one seizure med, if any at all. That would be incredible! I am so curious to know what sort of kid he'd be if he hadn't been doped up on meds since he was two months old. But it's also very scary. This is something we'll have to pray long and hard about and will probably go to Cleveland for a second opinion, just to make sure this is the best decision. Yet we know that God has a plan for this sweet little baby and that all we have to do is trust in Him. He will take care of the rest.