Tuesday, 2 October 2012


Monday evening, September 17th we got the call - time to go in for the video EEG! We were told to arrive anytime after 8pm which made things a little confusing for Ryan. Bath, bottle, van - WHAT? But he handled it well.

My Dad came with Jeff and I to help get Ryan settled and to help cart all our stuff to his room - yikes! We brought all his bumpers and just about every toy he had from soft ones to bigger electronic type toys and of course his high contrast black and white books. We basically brought everything but the kitchen sink as you can see in this picture (all this for a 24 hour - 4 day stay):

We shared a room with a young mother who was there with her 3 week old. Not sure what he was in there for but he was hooked up to an IV for fluids and antibiotics. As we were getting Ryan's crib ready the nurse came in and checked him out - temp, blood pressure, heart rate etc. She then told us that the EEG tech's would be hooking him up the NEXT day! Well what the heck are we doing here NOW? Ryan could be home in his own crib and I could have avoided a night in this thing:

Oh well, we were in the hospital which is where I had been wanting him to be for a while...we'll have a nice little sleep and get hooked up the next day. That nice little sleep indeed was little but definitely not nice. The poor little baby next to us had to have his IV replaced twice in the night and holy smokes he was one loud squawky little thing. It was a long loud, brightly lit night that left me with about 2 hours of sleep and Ryan with a scattered few more than that. Morning came and with it brought a whole new avalanche of nerves as we waited to get hooked up. My Dad came by early to bring me some breakfast (he's the best)! While he was there a nurse came to escort us to the EEG room to get Ryan hooked up. His head was measured and marked and all 25 electrodes were glued and cemented to his head. Then came the gauze, tape and stocking/hat complete with a "tail" to keep all the wires encased and tidy. Here's what the back of his head looked like - complete with his own little ducky tail:

Back down to his room we went with the EEG tech pushing the camera/monitor cart thingy in front of us. Ryan got re-settled in his crib and was "plugged" in. As soon as I saw his brain waves blipping away on the screen my stomach was sent way down to my toes! I hate that monitor! I took this during one of his "episodes" (freaked the heck out of me - the lines are suppose to be nice and mellow in a 'normal' brain). The neuro says this is what the brain looks like as it's getting drowsy...hhhmmmm...okaaaaayyyy:

Ryan's neuro and a couple of residents came in to check on him throughout his stay. I was very very impressed with the attention, care and consideration Ryan and I were given by his team. It was nice to have after an incredibly rude and somewhat hurtful e-mail I had received from a different doctor just a couple of days before (regarding a video I had sent of Ryan). The neuro was wonderful when dealing with my anxieties about what I was seeing on the monitor and explained a lot of the blips to me. I told him he wasn't allowed to leave the room and all he did was laugh not too sure what was so funny as I was quite serious and in the back of my head I was thinking of ways of barricading him in the room with Ryan and I!

The second night we were there Ryan could not settle and was awake crying until 2:00am. As soon as he would settle just a tiny bit the baby beside us would start up and set Ryan off (weird because he's not usually bothered but stuff like that). Poor guy though was so out of sorts and just wanted the peace, quiet and comfort of his own bed. Morning came quickly and with it came more hours of standing and staring at Ryan waiting for something to happen! For our entire 3 day stay (48 hours hooked up) he had only 3 "episodes" and all were fairly weak.

Here is a picture of Ryan doing a little post dinner vision stimming with the iPad:

Our 3rd night was great as our neighbours had been discharged that afternoon so it was just the 2 of us all night long. It was awesome! We both slept really well. I woke up and waited for another episode but Ryan wasn't really cooperating - haha! He was however starting to get bored on day 3 and a little antsy. During the neuro's rounds that morning he asked if I felt we had enough data to get some answers. I think we did.....discharge papers were written up and the tech came down to soak the leads off Ryan's head. After a long 48 hours of not being able to rub Ryan's silky little curls I was very anxious to get his "hat", tape, glue etc...off! I was very shocked and could have used a little warning before I saw THIS (September 20th):

We got him home in time for lunch and a nap in his own crib...here's our sweet little bum post nap, clutching one of his favourite bed toys (it's gross and stained but he loves it):

It took a good few days to for both of us to catch up on some sleep. It was good to have some down time when we got home because the following week was nuts! 7 therapy appointments, 2 days of nursery school for Quin (one I was a duty parent for), plus toy cleaning duty at Quin's school. This was also the week I had to leave her for the first time ever in my life with "strangers". I was emotional on the way there....fell apart in the parking lot....composed myself enough to go in. Got to play with some of the kids and Quin for a bit but felt myself started to buckle as I watched her walking around. I scooted into the other room where the kitchen is and let myself fall apart. The poor Mom on snack duty (she was in the kitchen prepping the snack) must have thought I was crazy. Before I could get myself together and head back out for a goodbye circle time had started so I had to wait. I went back out and watched Quin dancing and having fun during circle time (such a relief to see). When the kids were all excused for free play I rushed Quin over to the painting easels (probably her favourite station - one I knew would be a good distraction for her). This was it....the moment I had been dreading since pretty much the day she was born....that hug, kiss and goodbye that begins the early stages of independence (aka Mommy has no control over what happens after she leaves). With a VERY large lump in my throat I choked out a quick goodbye and reassured her that I'd be back to get her when school was over. A big squeeze and kiss and the tears fell literally as I was rising from my squatted position and turned to walk away. Sobbed the whole way back to the van and home. I would have stayed in the parking lot for the next 2 hours but Ryan had a 10am therapy session so I had no choice but to leave (worked out for the best really)! When, Ryan and I picked her up I got the biggest hug and soaked in her "I missed you Mommy"! Home we all went happy to have made it through the day. I think that night I slept like a log....holy smokes emotions sure do tucker a person out!

Monday October 1st, we met with the epileptologist. We learned that Ryan didn't have a single seizure during the 48 hours he was hooked up - GREAT news!!! You would think I felt a little reassured...maybe a tini tiny bit but that's about it. Once Ryan comes off Vigabatrin we wait for things to happen. Will the his Infantile Spasms return? Will he quickly transition into new seizures? How bad will they be? Basically we will be living the rest of our life / Ryan's life on edge waiting for him to have new and different seizures including Grand Mal (the full blown scary looking kind). Its great knowing he didn't show any seizure activity for the 48 hours he was hooked up for but maddening and frightening knowing the activity at the back of the brain is still there (about 70% of IS kids have the activity in the occipital lobes). As his neuro describes it, the epileptiform discharges that are happening in Ryan's beautiful brain are like little sparks. If there are enough sparks happening and they begin to happen more and quicker they ignite a fire (aka a seizure).

In most cases IS resolves around 18 - 24 months. In some cases it can continue to the age of 5 but its not common. If the spasms return 1-2 months post wean, Vigabatrin would probably work at controlling them again. Any longer than that and the brain has already moved on from the drug and it very possibly wouldn't work.

If he was to have a bunch of little seizures his brain should be fine. Doctor's can't tell me how many it would take to cause damage (no one knows apparently). If he was to have a Grand Mal lasting more than 25 minutes some damage could occur...coma's are possible but its not always a likely occurrence. I asked at what point do we call 911. He said anything involving body convulsing lasting more than 5 minutes. Under no circumstances are we to put him in the car and transport him ourselves.

Its all a lot to take in but nothing much new that we didn't already know about. We wish we didn't have to know about any of these terms of course.

Back to the hospital on Thursday for his GI appointment.