We quickly learned that Drew wanted to keep us on our toes and that he liked to change things up every weekend - his seizures would frequently stay the same for about a week, but almost every weekend he has presented something new for the doctors to marvel at. Given the way he's changing and not responding to medication, the doctors are starting to introduce the idea that Drew may have a metabolic disorder, or a mitochondrial disease. As such, they are going to do extensive testing to try to identify what we might be dealing with.
June 6 - Drew went under the knife today for a minor muscle/skin biopsy of his right leg. It was a very quick procedure and we think the anesthetic bothered him more than the surgery - he complained only occasionally today and then seemed to be over it after that. Amazing!
June 8 - He started having seizures on his right side. This added a new dimension to play - with both hands jerking all the time. He persisted though, and was mostly in a good mood, still charming nurses and trying not to throw toys over both shoulders.
When Drew started seizing on both sides the option of surgery was eliminated as they can not remove the motor cortex on both sides of his brain. These changes look more suggestive of a mitochondrial disease, though we found out this week that these diseases are very rare, each one seen is different, they do not have a cure and the current method of treatment is vitamin therapy. We are holding onto the idea that there is a very wide range of severity and many people can live full lives even with a diagnosed mitochondrial disease.
June 9 - We were introduced to our new neurologist, Dr. Adam Kirton. He immediately ordered a whole new slew of tests and it was a busy week for Drew. He had another EEG done, he donated blood for bloodwork 3 of 5 days (unwillingly as it may have been) , he sat still for a VEP and SSEP test (vision and somatosensory), a stomach/chest ultrasound (to eliminate cancer as a cause), another MRI (which he slept through!!! must have been a God thing), and yet another vision test, and willingly endured a CT scan. We had no idea life could be so busy at the hospital! Add to that about 3 - 2 hour naps for Drew a day, and the days went quickly!
June 16 - Drew is getting to know the EEG techs pretty well now. As much as he doesn't like what they do, he seems to like the ladies that keep gluing the leads onto his head. Maybe it's the glue they use! He had another EEG done Monday morning and more bloodwork. They have collected a pretty good amount by now - we keep wondering how he's keeping up!
June 22 - They needed a hair sample for another test so Drew had his first haircut. They lost that sample though so he also had his second hair cut this week! The second one was much more obvious than the first as it was took a chunk of hair right out of his beautiful reddish blond topnotch. (That one made Mommy cry!) The hair test came back negative, but they refused to give the hair back! : )
June 24 - We tried IVIG (Intravenous Immunoglobulin) in the hopes that it might reduce any inflammation in his brain that might be causing the seizures, but that was not successful either. He did get a little irritated with having to be hooked up to IV machines again for a couple days though, and Mommy tried her best not to get too tangled up in the cords! We didn't pull any out on accident this time so in a way we considered it a success!!
June 27 - We wanted to see how big Drew's little heart was so they did an ECG of his heart today - well ok, really that's probably not what they were looking for, but Mommy was! They said in addition to the hole and leaky valve they found in his heart while in ICU his heart appeared a bit enlarged, but they again weren't really concerned about his heart and we will be followed outpatient for that. There may be a connection between what they see in his heart and a mitochondrial disease as it could affect the energy organs of the body. We won't know the answers for a while though.
June 28 - Let's go home again! Drew is still seizing, though it's mostly contained to the left side of his body at this point. All the tests done to this point have been suggestive of a mitochondrial disease but not conclusive and the rest of the results could be months in coming yet so they are going to discharge Drew with the plan to follow him as an outpatient. We will continue to play with his meds to try to get the seizures under control, but we can do that from home. He is eager to be at home, and his big brother is even more excited to have Mommy and Drew at home so home we go!
(Peyton prayed this week that Drew would get better and that Mommy could come home from the "hostibal". Mommy has been staying at the hospital for the purpose of nursing Drew and taking him for all his tests, and has been trying to spend time playing with Peyton every day, but life is far from normal right now for him! He's been so brave and patient - we couldn't ask for more!)