Last Friday we spent the day at Parkview, some days Ayden has been better than others. Our pediatrician shared our concerns and we were in contact with our team in Wisconsin off and on all week. On Friday, they squeezed us into clinic with an associate of our neurosurgeon, and then Dr. Hecox, our neurologist, came in afterwards. We came home from Wisconsin Childrens last night around 10 PM. We know it is not seizure activity, our neurologist ruled it out with an EEG yesterday, but we know there is something wrong. Ayden is tired, more than he should be, and being tired is affecting other things like his coordination and his speech. Our neurologist and our pediatrician feel it is a pressure issue, but without enough data neurosurgery will not take any risks at this time. A follow up CT has been ordered to monitor the situation.We have to take the wait and see approach. It is not one I am fond of. I can tell you there is no better sound than hearing the knocking of my Bubba's hand on the side of the bed. It means that he woke up, on his own, and he is ok. He is OK, he is happy and smiling and the ornery little ... he always is, but then he gets tired. He sleeps when he needs to. Sometimes he sleeps for 20 minutes, and sometimes for two hours. It is not enough to rush into anything, but rather a reason to keep a watchful eye.
It is ironic, as I type this I am up watching "Gifted Hands" and Dr. Carson is performing his first hemispherectomy. We are so lucky to have our Bubba, he is a blessing for sure. He was born during the age of the internet. Now, a mom who is worried, can reach out to others who have walked this path. I am so thankful for our hemi family. The support we need is just a link, message, or text away.
Ayden is ok, I think that is the most important fact to know. I have not shared much of the last week with many, but as I have received some texts with questions this is always the best way for me to try and answer.
