When Will It Stop

This morning started off very positively, Declan's oxygen tube was removed. We finally had full access to his cheeks! We were feeling very upbeat about everything. The doctors were going to give us the green light to feed him with a bottle. We were feeling so good about things I decided to head down to work for a bit. After battling taillights on I-95 for almost 2 hours, I settled into my desk. My office visit was short-lived however. About 40 minutes after I arrived Tammy frantically called me asking that I return to the hospital because Declan was having seizures. Although my visibility was hampered by both the driving rain on the windshield and my tears, I made it back in half the time.

I was greeted by Tammy's puffy eyes. She informed me that when she was getting ready to feed him he started getting sleepy, and then the seizures began. They called the doctors in and he seized again. We began receiving visits by various doctors and neurologists.  Declan received medication to stop the seizures. He also underwent a CAT scan. The scan returned nothing obvious. As the medication wore off the seizures crept back. I don't know if the nurses just felt bad for us, but they allowed us to hold him for the first time since his surgery. The experience was very bittersweet. As I held him in my arms, he would occasionally seize. My hear ached every time I felt his small body twitch in my arms. I wanted to stop them somehow, but couldn't. The doctors are slowly increasing the dosage until they find the right balance to stop the seizures.

Declan's head is currently covered in the lines used for an EEG - looks like a little hat of gauze with 24 various colored wires poking out.  My eyes go from him to the monitor and back again.  I sit and stare at the waves on the screen and cringe every time I see the patterns that indicate a seizure. Unfortunately, he can't have an MRI yet because there are lines  going into his heart from his surgery that cannot be removed yet. Hopefully with the EEG and MRI they can pinpoint the cause.

The doctors seem optimistic: "he's doing great - we're just having a minor setback."  I do my best to shake my head in agreement, but I feel with each step forward we take an almost equally large step backwards. I am so drained from this process. We were so excited about what today would bring, only to have our hopes shattered by another setback. I feel exactly like my emotions the first night after his surgery, unsure what to make of the situation and the uncertainty. Let's hope for a brighter tomorrow.