If I could choose a soundtrack for the past six days of my life, it'd be The Who singing Tommy over and over. By the way, those past six days feel like a million hours.
I am really, really tired right now, in ways that go beyond just sleep deprivation. But I can't let another moment go by without saying thank you for all the emails, comments, and tweets. I wish I could respond to them all, but life keeps pulling. I will say that I read them in the hospital, over and over, and felt so thankful, so blessed to feel such an outpouring of love and support. Thank you.
Wednesday night, Tommy had another seizure. It was both less scary and more scary. Less scary, because we knew what it was this time. More scary, because he was having another and we didn't know why it was happening. We called our pediatrician and after assuring the receptionist that no, we did not need to call 911, she passed the message along to our doctor. The nurse called back almost immediately and said that our ped was in the process of getting us a bed at the hospital and she'd call back as soon as she had more info for us. (Side note: I love our pediatrician and if you live in the area and want a recommendation, please email!). Although Tommy's seizure only lasted a little longer than Monday's, his postictal state lasted longer this time. We managed to get ahold of my parents, who said they'd meet us at the hospital to take Luke. Luke, who once again, was so brave and as soon as we said we were leaving, he grabbed his shoes, hat, and a coloring book and pen. I am so proud of him.
By the time we got to the hospital, of course, Tommy was ready to run around and seemed so normal. We got settled in and the only highlight was the cutest hospital gown ever. I couldn't stop myself from snapping pictures. We were still aiming for sleep deprivation for the EEG, so we let him rearrange the room for as long as he could happily stay on his feet.
He didn't eat any of his dinner, likely because he had a seizure right after dinner, so by 8 he was starving. We also discovered that the cafeteria was closed and the only snacks available were in the vending machine, so my friend Mark brought us cheese, fruit, crackers... and Mountain Dew, which is important because we had to stay awake til late o'clock.
Tommy was a total rockstar, despite the heplock in his hand.
He made it until 11, when he crashed. Literally, his head slumped forward and there was no waking that boy. The nurse came in and gave us the green light to just go to sleep--thank goodness. I was amazed at how quiet the floor was compared to labor & delivery. Tommy woke at 1 in the middle of a night terror, but once we settled him back down, we slept until the nurse came to wake us up at 4. Keeping Tommy awake at first was a little difficult, but Shane ran and got us McDonald's and the prospect of hot food perked up Tommy a little. Once the sun started to rise, Tommy was enthralled by our view of the staff parking lot, with cars pulling in and out and the garbagemen out collecting trash.
Finally, it was time for his EEG. He screamed the entire time the electrodes were placed, but the tech was gentle, soothing, and wonderful. He fell asleep very quickly and slept through the entire test. The EEG results were normal, thank goodness. Then we started the MRI nightmare. They told us to have him asleep at 9:30, but then didn't come to take him until 11. At this point, he'd been asleep for an hour and a half, so guess who woke up the instant I laid him on the table?? They sent us back upstairs and told us to all them as soon as he went down for an afternoon nap and they'd get us in.
Finally, we met with the ped neurologist (side note: if you live in the area and want to know who NOT to go see, please email me), which was a total nightmare. She walked into the room and stated that she didn't think he was having seizures, which made me happy. Until she added that she was pretty sure he was just having a temper tantrum and holding his breath to the point of passing out. Uh, no. She made me feel like I was being dramatic and attention seeking and I wanted to push her down. I explained that I found that hard to believe because the first one occurred with his EYES OPEN and the third one happened when he was smiling and walking toward me, not when he was throwing a fit. At that point, she did agree with me, but it made me so angry that she'd made up her mind before even meeting with us. She said she'd come back and meet with us after the MRI and then she prescribed him Benadryl in the hope that he'd sleep through it. (The hospital we were at does not sedate children under eight years of age.)
At some point, Sarah brought us lunch and running downstairs to see her and get a hug was one of the bright points of the day. Round two of the MRI nightmare began shortly thereafter. We called as soon as he fell asleep, but again, we waited over an hour before someone came to get us and again, he woke up soon we laid him on the table. After a few attempts where he absolutely freaked out, they said the last attempt was to have me go in with him. So I did. It was absolutely the last thing I wanted to do, but how could I not? I laid on my stomach and was able to get my head on his chest, far enough up that he could look into my eyes and get a hand into my mouth. We made it through all 25 minutes this way. I felt myself starting to panic about halfway through, with the different noises and the closeness of being in there with Tommy and on my stomach, no way to see out of the machine. I played mental games and counted and focused on his eyes to keep myself calm. It was scary. The moment when I saw the light from the opened door and knew the techs were in the room to let us out made me so happy. Shane said my face was so pale afterwards, and I was just SO GLAD to be out of there.
After this, we got back to our room. And waited. And waited. The nurse came in and told us the MRI was normal. The bloodwork was normal. Everything was normal, except for my one year old having three seizures in four days. Julie ordered us a pizza and the most disgustingly buttery breadsticks ever. At 5PM, we started asking about the doctor. The nurse started paging and we sat. And sat. Tommy kept waving ByeBye to us and running to the door.
Tommy got more and more tired and frantic and we became more and more frustrated, to the point of discussing whether or not we should simply sign out AMA. Finally, at a little after 7, the doctor CALLED. No discussion of the test results. No discussion of long-term prognosis. Nothing. She simply told me she was calling him in a prescription and advised that I not let him play unattended in the bathtub (SERIOUSLY). At one point during the conversation, she asked me his name. It took every ounce of strength to not slam the phone into the wall over and over again. I got off the phone with her and hissed to Shane that we were never, ever seeing that woman again. When the nurse finally came with discharge papers, Shane asked when we could pick up his medical records because we were getting a second opinion. She seemed taken aback, but honestly, I've never seen a doctor with worse bedside manner than this woman.
We finally made it home and all passed out until 7:3o that morning. We were able to obtain our medical records easily and headed to University of Chicago, where we met Julie for lunch... and then met with a team of doctors who seemed to actually care. Doctors who, instead of trying to make up a reason for his seizures, admitted that they didn't know the cause, but that they understood why we cared. Doctors who are willing to work with us and who have ordered more tests and given us several treatment options and it was like a breath of fresh air. We left feeling hopeful. Although we wish we could have an answer, we are counting our blessings that we know that they aren't being caused by anything big and scary. I know that sometimes seizures JUST happen, for no reason, but three in four days is so troubling. My heart still leaps constantly if Tommy isn't in my vision. I spend every moment wondering if movements that seemed normal a week ago aren't actually normal. If he stares into space, I'm saying his name over and over to draw his attention. It's scary and I keep flashing back to Monday when his lips were blue and I thought he was going to die in my arms.
But I know this about Tommy. He is resilient. He is miraculous. He was born in the caul and although he's given us heart attacks from the first moments of his life, he's lucky and we're going to be okay.