Three Days of Testing...EXAUSTED

The monkey is officially 1! It's amazing how quick and eventful this last year has been, just the past few months in particular. Riley has now been on a high dose of ACTH (80 units, double what he started with), and still at the same high dose of Sabril as well, for two full weeks now. I can tell ya right now that the ACTH side affect of irritability is no joke. Most days aren't that bad, he just has his moments. Days here and there he's just pissed. We've been joking lately that he sounds like a baby dinosaur with all his grunting and whining. Other down fall of the irritability is that smiles are very few and far between. We went about a week without any, and finally Tuesday he gave me a big grin (even though his nookie took up most of his mouth) when I picked him up. I couldn't have been happier in that moment. Yesterday morning when Chris came back to the hospital he did the same thing for his dada, but without the nookie.

The past few days have been tiring, stressful and a test of our patience. Tuesday started us off with another 24hr admitted video EEG, so we could determine how his seizure activity was truly doing with the high doses of two meds. I spent the night with him at children's and all things considered he did pretty good for going through that again. The entire EEG has yet to be read, but we met with the on call neurologist Wednesday morning during rounds and he informed us from a quick look at the EEG, there was no apparent seizure activity :-) Can you imagine the shock and relief to hear that? I almost didn't know what to say because physically it still looks like he's havingr spasms, and at least a handful of them on a daily basis. However, the doctor even saw one for himself Tuesday when we got there and it didn't register on the machine. His thoughts are that they're just tremors, a possible side affect of being on ACTH (a steroid). Only thing now is we can't really tell the two apart without the help of an EEG, so I'm sure he'll have several more of those in his future while we get him tapered off his meds (Sabril first), to make sure the spasms stay gone. Now my concern and focus is turned to that. 

Today, we were back at children's bright and early to get Riley checked in for a MRI and spinal tap. We were told that once he was put under (since he's too young to hold still for either), the MRI would take about 45min and the tap up to an hour (I'm sure all depends on the size of the kid, etc). Two hours in we got our page, thinking it was to let is know he was headed to recovery. Nope, just updating us that they had just finished the MRI and we're starting the tap. HUH?! Yeah, so of course that left us wondering because they had the receptionist just give us a quick update. Once he was actually done a bit later, they ended up paging us for me to go back to be with him in phase 1 recovery (where you get woken up, and mom and dad see you in phase 2). So that immediately made me nervous and I took off down the hall. Turns out the biggest reason they wanted me back there was to monitor him myself to make sure he was acting normal coming off anesthesia. Sure enough I get back there and he's grunting like a baby dinosaur. What, that's not normal? 

So as I sit there and rock and start to give him a bottle (he was grunting because he was starving!), I'm filled in on why the MRI took so long and why they want to monitor him longer than normal. Being transferred from one monitor to the MRI's vitals monitor, his heart rate dropped from normal (around 140), down to 60. The anesthesia team knew that wasn't good and pulled him out and gave him some meds to get his heart going faster and monitored him awhile until it got back in normal range before proceeding with the MRI. Even when I got back to him I could see his heart rate was still all over the board. Ranging from a low of 75 all the way up to 160. It stabilized pretty quickly, thankfully, and after 2hrs the doctors were happy and discharged him. We don't know exactly why his heart rate dropped so quickly of course, could be because of anesthesia, or a combo of that with the meds. He's been under twice before and nothing like this happened, but all is fine now and it's all noted for any future procedures.

Now we just wait for a follow up appointment with the neurologist next Thursday to receive test results and figure out a game plan for his meds. Until then, it's vacation down to Vancouver to see Nana, Papa and Uncle Brad; and to the Oregon Coast with Auntie Staci, Uncle Martin and buddy Zeke! And FaceTiming my family while they're in NC. About time for a nice relaxing break!!

This is pure joy :-)