Christopher

The Short Version:
He lost consciousness last Thursday night. We called 911 and the ambulance took him to the ER in Hackensack Hospital.

His cardiologist & electro physiologist agreed it would be best to admit him to Mt. Sinai Hospital in Manhattan for tests and observation.

The good news is that we are now home!

- The doctors do not believe it was a seizure and they also do not believe it has a neurological basis.
- They believe it was a vasovagal episode and cardiac in nature.
- There are various triggers to vasovagal episodes Vasovagal episode -
- This vasovagal/fainting episode combined with his first-degree heart block might lead them to suggest implanting a pacemaker sooner rather than later.

But, for now, he's home and his biggest concern is that now he has to share his get well gift (a Nintendo DSi) with his brothers. When my parents gave it to him in the hospital, we said that while he's in the hospital it's all his but once he's home he has to share it with his brothers. When he heard he was going home, he said he'd rather just stay put in the hospital!
Funny kid!

The LOOOONG Version:
We spent the day at the lake on Thursday. Christopher was digging, swimming, swinging & playing baseball w/ his friends just as he has done all summer long. There was nothing different about the day. When we got home Chris started to say that his “head & belly hurt” and he pretty much hung out on the couch the rest of the evening. No fever, no vomiting and he was still acting fine just a little run-downish. I thought….maybe he got too much sun today, maybe he didn’t drink enough water, he’s just tired. He ate dinner and went upstairs w/ his dad & brother to watch football in our room. By the time I got upstairs, not too long after, he was asleep so I carried him into his room.

Sometime in the night I heard whimpering next to me and it was Christopher back again….I said what’s wrong Chris? And he sat up and said “my head & belly hurt” and he flopped forward w/ a little cry. I got up and ran around to that side of the bed to put my arms around him and comfort him. When I put my arms around him he was unresponsive and unconscious. I started yelling for Ken who had gone to the bathroom. He came in and put on the lights and we were trying everything to wake him but he was stiff & completely unresponsive. I called 911 immediately. They asked if he was breathing and we realized it looked like he wasn’t and that was the WORST moment of my entire life. Ken was still trying to wake him and I was running around getting ready to let the paramedics in, getting dressed and prepared to go to the hospital.

Chris woke up by the time they arrived and he looked at me and said “what’s wrong? What are you doing?” He had no idea what happened. It’s hard to say because it felt like FOREVER, I though the incident lasted a few minutes at least but Ken says he thinks it was less than a minute.

He was very groggy when he came to, cold & clammy and his complexion was green. The paramedics arrived and asked him questions like how old he was and when was his birthday to see if he was lucid, which he was, just very groggy. He kept saying he just wanted to lie down and go to sleep, and he couldn’t really walk, I was carrying him. The paramedic (who was wonderful) asked if he was stiff when the incident happened and made a position w/ his arms flexed out to the sides and asked if that was what Chris looked like….it was exactly. He said that was a seizure. They ran an EKG on him in my kitchen and all that showed up was his First Degree Heart Block, which we know he has.

The paramedic said that for something like this they will want to admit him for at least 24 hrs. Chris & I went to Hackensack ER by ambulance. Ken stayed home w/ Eddie and called my mother-in-law to come and watch Eddie while Ken went to work the next day figuring Chris & I would still be at the hospital. At the hospital Chris’ color started getting slightly better, and he was talking and joking (that’s just Chris) but he was still very, very groggy & weak and his eyes were red & very glassy.

The nurses and covering doctor said that anyone can have a seizure and they don’t consider it epilepsy after just one episode. They didn’t feel it was necessary to run any neurological tests (even though I told them that my father had become epileptic in his 20’s). They insisted that anything can bring on a seizure, even a stomach bug and since he had been complaining that his “belly hurt” that day that’s what they felt had caused it and they felt he could go home. As they were doing the release paper work Chris told me he had to go to the bathroom, but he asked me to carry him because he said he couldn’t walk, he was sooo weak. When we got to the bathroom he ended up vomiting A LOT. I pulled the nurse call alarm string and they came but were not upset at all by this and said that just shows that it’s a stomach bug that caused it. I was not really thrilled w/ this because I had never, ever heard of a stomach bug causing a kid to have a seizure???? I can see maybe if the kid had been vomiting a lot, got dehydrated and then had a seizure….but he vomited after the seizure. So we did as we were told and went home He threw up in the car once, thankfully the hospital had given us a bucket.

The next morning Chris got up and said he felt perfectly normal as if nothing had ever happened. The only thing that was off were his eyes…they were very sunken in & red & glassy. I’ve seen Chris tired before but his eyes never looked like that.

The cardiologist was first on my list to call that morning as soon as offices opened. I got a nurse there that I’m not crazy about, and now I remember why!!! I told her the story and asked if I could bring Christopher in to be seen just to make sure everything was okay, considering his history. She said that would be a waste of time because this was a seizure and not cardiac related. She said we need to call his primary care dr. and then make an appt. to get a neurological workup done. I said, I was planning to d that but would still feel better if he saw his cardiologist as well but she refused to make an appt. and insisted it would be a waste of time.

Called the pediatrician and they recommended a neurologist. When I called the neurologist they said they couldn’t fit him in til 9/10. Then my pediatrician called over and told them we couldn’t wait that long and need to be seen immediately. No doctors were in the office on Friday so she told me it would be Monday.

I still felt uncomfortable not speaking with his cardiologist so since I didn’t have much luck dealing with the nurse at Dr. Tozzi’s office earlier I decided to leave a message for Dr. Love at Mt. Sinai who is Christopher’s pediatric electro physiologist. He is also the doctor who did my genetic testing and is knowledgeable about nkx2.5 (the tinman gene); Focus of WSJ article that Chris & I inherited from my father. He called me back immediately and completely freaked me out when he said that this episode “is not reassuring” considering Christopher’s cardiac history. That said, he added that if he thought it was ‘very serious’ he would admit him, but rather he thought that it would be sufficient to set him up with a three week halter monitor at home to see what might be going on to have caused this incident.

Later in the day Dr. Love called back and said that he had a chance to think it over as well as discuss it with Dr. Tozzi (Christopher’s cardiologist) & Dr. Gelb (a dr. who has done extensive research on nkx2.5) and they all feel that he should indeed be admitted so they could observe him for a few days as well as run some tests; EKG’s, MRI, EEG & full neurological workup while he was there.

Ken drove us in to Mt. Sinai a few hours later, Eddie stayed home with my mother-in-law because Ken had to work the next day and I was staying with Chris. They told us that the weekends were slow as far as testing and that it was really difficult to get anything done on the weekends so the testing wouldn’t be done til Monday. My head was spinning after speaking to so many doctors.

Christopher did have one episode of bradycardia the first night we were in the hospital but that was it. I met with Dr. Gelb for the first time on Saturday morning and we talked quite a while. I had heard of him over the years through other doctors and had read articles by him and about him but this was the first time we met. He was nothing like what I thought he’d be. I ended up feeling really good talking with him and I like him a lot. I love when that connection happens with a doctor…..makes me feel very reassured. He is an expert on the nkx2.5 gene. He reminds me of Dr. House, but nicer! He was so nice in fact, he stayed and let Christopher do a rather long-ish card trick for him… Chris liked him a lot too.

Chris and I actually had a really fun time together over the last couple of days! We played cards & checkers & learned magic card tricks. Mt. Sinai is the only hospital in the world to have its own TV network for children. Ch. 78 is the hospitals channel and aside from all the great kids shows which they record on the first floor of the hospital they have an interactive quiz show two times a day where the kids can call in on their room phones to answer trivia questions. We played twice and he won four prizes! It was pretty cool! Christopher’s mood was up & cheerful & positive the entire time we were there. The only thing he didn’t like was being all hooked up and not being allowed to leave the room because they didn’t want to unhook him. He knew that the hospital has a really cool playroom called the KidZone but he was not allowed to go because they wanted to keep him hooked up to the monitors. Also whenever they would catch some strange heart rhythms they would run in and do a 12 pt. EKG on him…..he HATES that and once they left it on him on for at least an hour. Those were the times he would get so sad. But other than that he was wonderful and such a pleasure to be with and I was reminded what a really great, cute, funny, sweet little guy I have there. We’re so blessed to have him!!!!!

On Sunday morning Dr. Gelb came back and said that after reviewing all the info and observing Chris that he floored me by saying that he felt that the episode on Thursday night was not a seizure at all. He said that although my father was epileptic, he only became so in his 20’s after having open heart surgery in his teen years. He said that it was not uncommon back then to incur some kind of brain damage after open heart surgeries…which my father was one of the first to have. He believes that my father’s epilepsy was not genetic and so not something that Chris could have inherited. He also said that seizures, as far as we know so far, are not part of the nkx2.5 pattern. Also the likelihood of Chris having two major non-related issues (nkx2.5 & heart block PLUS epilepsy) was very unlikely. He has ruled out in his mind epilepsy or any neurological disorder, though he did say that I should follow up with the neurological testing on my own at home.

He does feel that it was a vasovagal episode brought on by Christopher’s tummy discomfort that he had been complaining about combined with his 1st degree heart block that caused the loss of consciousness. He said that often cardiac syncope/fainting can include that stiffness and that it is common for people to go for years having these episodes and thinking that they are eplipetic when in fact they are not and it is truly cardiac in nature. Some people are more sensitive to this vasovagal response. In fact, when I collapsed last spring (which this entire episode seemed so similar to me) my EP said that same exact thing to me. The only difference was that I did not go full unconscious as Chris did, keeping in mind that the fix for me was an implantable pacemaker, which they gave me a day later.

Now we are dealing with a situation in which Christopher is sensitive to this vasovagal response which combined with his heart block makes him more susceptible to fainting episodes. Dr. Gelb said that sports are fine for now and he does not see the need to restrict him, particularly since when doing sports it is the opposite type of reaction than vasovagal…sports=adrenaline, quick heart beat; vasovagal=low heart rate. But he did say that he would not leave him alone in a pool or the lake in case he were to hit his head or have any other kind of incident that might bring on this reaction again causing him to faint.

At this point he said the question is whether or not we want to implant a pacemaker now, rather than waiting until he is older. We have been told all along that this is in his future, the when is the only thing that has been unclear. He said that it is not a very common practice to put them in children as their bodies are still growing and this increases the possibility of lead breakage among other things. However, in Christopher’s case he said that he feels it is worth considering but he said he is going to leave that up to his electro physiologist and cardiologist.

Plan going forward unless I get anymore surprise phone calls from Dr. Love:
Wednesday: Appt. for full neurological workup
Thursday: Follow up appt. with cardiologist & elecrophysiologist – this has to be Thursday because that is the day the EP is in the Hackensack office.

Now I feel like I need to either go meditate, get a pedicure, clean & organize my house from top to bottom or just veg & watch a few good comedies w/ lots of junk food! But I guess what I really should do is get to the gym soon since I've been eating all kinds of junk in the last few days! Chris, on the other hand, is perfect!!!