Necessary Steps

WOW, was today a rough one.  We tried to mentally prepare ourselves for everything that we were going to go through today, but we are completely drained.  Will slept pretty well last night, considering he was wired up to an EEG and in an unfamiliar environment.  Each room in this unit is supposed to press a button if the patient is having a seizure which sounds an alarm in the hallway so the staff can properly record and respond to the seizure.  Periodically throughout the night a loud BEEP BEEP BEEP would come from the hallway, followed by some commotion and the alarm would eventually silence, so sleep is challenging.

Will was awoken at 5:00 AM for his medication, then fell back asleep. At this point, Will had been on the EEG recording machine since we arrived yesterday afternoon, and still hadn't had a seizure.  Finally he had a minor one (about two minutes) around 9AM, then a pretty severe one (about seven minutes) at about 10:30.  Both were recorded and we got good data.  You never want to hope your child has a seizure, but we were glad that they were able to record the data before starting the ACTH.

At 11:00 he was taken to have an IV put in for the PET Scan.  He was not allowed to eat or drink anything (not even water) today so by this time he had been fasting for 13 hours, and was getting a little edgy.  They tried to get an IV into a vein and had a terrible time finding a good one.  After two failed attempts in his arm, they resorted to his left foot and got it, about a 30 minute process.  By the time they were done, he was terribly agitated, his voice was hoarse from screaming and his face very red and splotchy from fighting the pain.

Next, he had to have a short, 25 minute EEG study while remaining relatively still.  They then took him to administer the anesthesia, and conducted the PET scan, lumbar puncture (spinal tap), and blood draw.  We were taken to his room and were there when he woke up.  The look on his face was heart wrenching, but our tough little guy had done what had to be done.

Will under sedation

We returned to our room and Will finally got to eat and drink at about 4:00, 21 hours after his last meal.  Lots of visitors followed from the Clinic to make sure that Will was doing alright, and that WE were doing alright as well.  At around 6, Will was given the Pyridoxine injection, which took about 20 minutes.  By that point, he had pretty much had it, and he finally fell asleep for a little while.

Then, Grandpa Dan and Grammy came to see us, and Will was happy to see some familiar faces.  Even better - they weren't wearing labcoats or scrubs, as he is quickly realizing what it means when he sees a white coat.

Tomorrow should be a much slower day.  The nurses will give Will his first ACTH shot tomorrow, and then on Saturday we will have to give the injection ourselves.  Today we had to practice giving the shot on an orange...Kelly's hands were trembling even just doing that, but we know we need to be strong for Will.  Once we are comfortable with it, we will be discharged, which we think will be Saturday.

We should know within the next 2-3 weeks whether the ACTH is working or not.  If it does work we have five to six months of treatment, then step down to another drug, and so on.  If it doesn't work, we have two months of weaning from the initial shot, then move to the next option.  We still have a long road ahead of us.

We knew today would be a tough one, and now we are back in our room and Will is resting in his Mommy's arms.  Plenty of great people are watching out for us here at the Clinic, and we are getting constant support from our family and friends.  Thank you all!