We are back at our hotel after a grueling two days. Maddie was truly put through the ringer. As a mom, it is so hard to know that I chose to come here and put her through all this testing. She has just had too much stuff done to her and I wish there were a way I could protect her from it all.
That said, we are done with the worst of it. She had hundreds of seizures on the overnight EEG, so we feel sure they should have some good data there. The biggest hurdle today was getting a good IV line in her. They had one put in upstairs before we went down for the PET scan, but by the time they were ready for us downstairs, that IV was no longer working. It took us awhile to get another line started, so Maddie was absolutely screaming and sweating by the time they injected the tracer. Then from the stress of it all, she had a huge cluster of seizures during the uptake EEG. She then continued to have seizures while sleeping in the PET scanner. She had not slept at all last night so after the PET scan was over she just did not want to wake up. She slept off the sedative most of the afternoon, so it could be another interesting night. She has to begin fasting in the middle of the night again for the PET tomorrow morning.
So we have another PET Wednesday, which means starting another IV in the morning. Then we will return to the hotel and maybe even venture out and see something other than the inside of the hotel or the hospital in the afternoon. Then Thursday morning we meet with Dr. Chugani to get the results of all the testing and see if surgery might be a possibility for Maddie.
Now that I am here, I think I am getting my hopes up that he will in fact say she may be a candidate for surgery. I had tried to keep my expectations low, because I hate to be disappointed. But I just think that I couldn’t have put her through all this if I did not have hope that it might lead to a better outcome for our little girl. Either way, it was something we had to do to try to answer all the “What Ifs?” in our heads. I think that at the very least we will get good information about our next steps in this fight to get her seizure free.
So keep her in your prayers please as she undergoes more anesthesia and testing and as we get the results.
Love to everyone,
*random note* for anyone interested, I finally added a link to a video of her seizures on the main photos page. If you click on the Photos tab at the top of our site, the link is on that page.