Friday, June 6, 2014

Switching to Swedish {Owen's Story Part 5}

Finally! Part five of Owen's story. You can read the first four parts by following the links below.

So, at this point we were headed down to Seattle for a video EEG. Since Brenna was still nursing, she came along too. We were told to expect to stay for 3-4 days. We got a hotel room in Seattle Sunday night so we didn't have to get Owen up too early for his 8:00AM check in. We already knew that lack of sleep was a sure fire seizure trigger and while the hospital wanted to get a seizure on record, they didn't want it happening before we could get him all hooked up. Although Rod and I were feeling more comfortable with our new hospital than the old one, we were still very much on edge.

We arrived at Swedish and checked in downstairs and then headed up to the pediatric ward. The nurses were so nice about settling us in. Swedish has all neurology patients bring their own medications because it is extremely important not to change brands. So, they had us bring our meds from home and then the nurses take them and check them in with the pharmacy. Due to our previous experience at our old hospital, Rod and I chose to keep a dose of rescue meds on us. We just tucked one package in our bags and didn't hand them over. I was not going to be in a position where Owen was seizing and  no one was bringing me the medication soon enough EVER again. The EEG tech came in and started hooking up all the probes. First they measure his head and mark red X's in all the right spots. Then they clean the spots with a special cleaner and apply the disks with stuff that looks like toothpaste, but isn't. Next they put gauze pads soaked in the most vile smelling adhesive known to mankind and place them over the disks. Then they use a little air/light gun to harden the adhesive. The whole process takes about an hour and a half. Finally they give him a little hat and hook up his monitoring pack.

From this point on Owen is stuck in his room. The wires reach far enough that he can sit on the window seat and reach the bathroom, but that's about it. Although last time our neighbor did manage to make it a few steps into the hallway before he disconnected his. A few minutes later the nurse came in with Owen's rescue medication and told us that after reviewing his chart they had decided the medication needed to be kept in his room. I was starting to feel a little guilty about keeping the dose I already had with me secret. She also put in an I.V. so they would have another way to give even more medication if necessary. Once she left the room, Rod and I both let out a big sigh of relief! We really felt like we were in the right place and we hadn't even met the new neurologist yet!

So, we all hung out in Owen's room for the next few days. The hospital was kind enough to let me keep Brenna in the room since she was still nursing and largely immobile. Rod ended up staying too because it was pretty hard for me too keep Owen hooked up to all of his wires and also take care of Brenna. It was totally against policy for all of us to be there around the clock, but they were really nice about it. The second day, the doctor came in to meet us and talk about the results they had at that point. This is where it gets really hard. We knew Owen was having the "big" seizures. We were wondering about some of the twitching and jerking he was doing at night and we were beginning to suspect that some of the tripping and falling he was doing was actually seizure activity, but we didn't know for sure.  The doctor confirmed all of our fears and more! It turns out that Owen NEVER had normal brain activity. He had constant spike wave patterns that moved over every area of his brain. Not a single part of his brain was unaffected. Most of the time the activity didn't turn into a true seizure because it didn't stay in one place long enough. He did manage to have several instances of true seizure during the day however and nearly non-stop seizures all night long. That was a lot more than we had been expecting to hear. The doctor told us she had no idea how Owen was functioning (long pause) as well as he was.

We ended up in the hospital for 6 days. Owen did finally have one of his (newly named) "big" seizures, as opposed to the little ones he was apparently having all the time. Our new neurologist told us that brain surgery might still be an option, but only as an absolute last resort to get the large seizures under control since the two we had on record did originate from the same spot, but that we would have to go into it knowing that it wouldn't solve the whole problem. We removed one of his medications that didn't seem to be helping and started a new medication that did help bring the "big" seizures to every 6-10 weeks instead of every 3-14 days. She also talked to us about the Ketogenic Diet. As soon as she mentioned it, I knew we would be trying it. We decided it wasn't going to work at that time though because of all the eating issues we were still dealing with. That was actually the only issue we had during our hospital stay. Owen ended up eating chicken strips and stuff we brought from home the whole 6 days we were there, because he refused all the other hospital food.
Saturday, we got Owen all unhooked, a pretty long process. I don't think all the gunk was actually out of his hair for a week. Owen had been telling us all week that the probes and wires were hurting him. We kept telling him that they didn't hurt, they just felt funny. Well, when they pulled everything off he had open, raw, oozing wounds. It seems that in addition to tape and plastic, Owen is allergic to the EEG adhesive. Unfortunately, frequent EEG's are pretty much unavoidable with Owen's disorder. Now, they are trying to not do any longer than 24 hours, he gets red from that, but only had a few open wounds. There are a few places where his hair has never grown back.
 As soon as I got home I ordered the Charlie Foundation Starter Kit and This Book, and This Book. We started testing some of the recipes (we never gave full Ketogenic meals since that can be dangerous) and making small changes to Owen's favorite meals to bring them slowly, slowly closer to something acceptable on the Ketogenic Diet.
About 6 months later, Owen's seizures had started coming closer together again and we had him eating a greater variety of food, so we told the doctor we were ready to try the diet. Two months later, we entered the hospital again for our diet initiation. It's now been over a year since we've called an ambulance and over 7 months since his last seizure. His EEG in March still showed the abnormal brain waves, but no actual seizures! We made a few changes to medication and the diet and he goes in on Monday to see if we've managed normal brain activity yet. Wish us luck !


  1. All I can say is "wow!". What a journey you've been on.. You are amazing parents for committing so completely to the ketogenic diet with a child with such food sensitivities... I think you and your hubby deserve some of those "beads of courage" too!

    When my son M is in the hospital, I always keep a little of his meds too. I don't turn every single pill in, for them to give him, as we've had instances where they've messed up his meds and he's paid the price! So as long as they give him his meds correctly, they can do it... but if they mess up I'm ready to step in. (The things you have to learn....)

    Have fun with all that alpaca fiber! :)

    1. Maura, Owen's meds are so complicated right now that the nurses just keep all of them in a plastic bag and bring them into his room for us to administer. I take out what he needs, they scan the bar codes, then I give them to him. It's one of the things I love about Swedish, they don't even give themselves a chance to mess things up.
      It makes me feel so much more comfortable with them. I bring all of Owen's keto food too. the nurses just heat it up for me. The hospital usually provides his drinks and I can get butter and cream from them, but otherwise they don't even try to make his meals.

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