Sunday, January 9, 2011

Oh baby, baby it's a wild world...'s hard to get by just upon a smile.

Ain't it the truth? Say what you will about Cat Stevens, but the man wrote some good music. And this was the song that came to mind while laying in bed with The Toots the other night.

It all began when Tessie had a seizure on Christmas day. It had only been a few days since her previous seizure and I was kind of surprised to see another rear it's ugly head so soon. Since our eight day stay at Childrens in November and more medicine increases, the seizures were happening about every 10-14 days. Quite a nice reprieve, let me tell you. But it had only been four days. Hmmmmm....

Then, four days after that, another one. It was kind of freaking me out but I chalked it up to an antibiotic that she was on. My thought that either the antibiotic didn't agree with her or that it was messing with her highly specialized diet.

Two days later another seizure. This one was bad indeed. Not that any of them are good, but this was a whole new monster. One that I hadn't dealt with before. The seizure that wouldn't quit.

I dumped a whole slew of meds into her little body and administered the oxygen and basically prayed. Then, after about 19 minutes it stopped. Or so I thought. Hold on, she was back into another one-hard. What was going on?

We were in trouble and I knew it. I called Sheila and told her what was up. Sheila, my own personal security blanket told me to hang up and call Jen. I called the medical center and irony of ironies, everybody was out on an emergency call. Got that? There was no one to help. Not the best feeling that I have ever had I can tell you.

So I hung up and called her pediatrician, Dr. Stephenson. The receptionist answered and I said, "Get Dr. Stephenson for me please."
"He is with a patient..."
"Get him NOW. Tell him this is Joanna Reidy and that I cannot get Tess to stop seizing."
"Hold on."
"Mama Reidy, what is going on with my girlfriend?"

So I launched into my saga, probably a bit hysterically because by this time it had been thirty minutes. He had me check her oxygen and she was maintaining it so he felt a teensy bit better. I explained that all the island docs and the ambulance were already out on an emergency and asked what I should do.

Of course, while I was on the phone with him, Tessie finally stopped seizing for good. Thank God. He told me to keep her monitors on her and watch her closely and call him back in an hour. If she seized again, we would be flying over either by plane or lifeflight depending on her status. Great.

As soon as I hung up with him the fill-in doc at the medical center called. He was very concerned but pleased with how I handled everything (which made me feel good) and agreed with Doc Stephenson. We would wait and see how she did. And, I would like to point out, that while it seemed I had no help, the ladies behind the desk at the medical center made sure I got called as soon as the doc returned and I appreciated that very much. I also knew, that if need be, I could page out Jen myself but then what? Make her decide who needed her more I guess. What a fun position to put her in.

Anyway, Tessie put in a crappy day but no more seizures and all docs called back before leaving their offices for the day, which is always a nice thing when you are a scared mom, and of course, Sheila was on stand by via telephone.

We stopped the antibiotic and about a week went by without any big seizures although I think she had a couple of very small ones, so I thought things were sort of, kinda, back to normal. Well, our normal anyway.

Then I went to the basketball games Friday night. The Hubby stayed home with Tessie because one of her seizures the week before occurred at a basketball game. How thrilling for us. The game was great but I kept thinking about The Toots. That little knot in my stomach was starting to talk to me again. Enough so that by the third quarter of the boys game I got up and left to go home.

When I got home everything was fine. Hubby was getting Tessie ready for bed and had everything under control. Huh, must be getting paranoid I guess. Then, as I was setting up her feeding pump, I heard him say to me, "she's going into it."

This was another doozy. I called Sheila after sixteen minutes and she called Jen. this seizure lasted for about 22 minutes of her going in and out of seizing. Jen called me and we discussed strategy for the night. Obviously Tessie would be sleeping with me but, and here is where things get really fun, we had just given her her night time meds and then had to give valium and ativan on top of all of that. Would this suppress her breathing? We did not know, which meant I was on high alert for the night.

Tess handled it all like the trooper she is but I was a wreck all night. I would doze off to sleep and then jerk awake to check her oxygen monitor. Every time I woke up she was wide awake. I felt so bad for her. Ativan for most people knocks them out. Naturally, Tessie reacts as only Tessie would and it makes her twitchy and restless. I would try to stay awake to talk to her and hold her hand but then would doze off and repeat the scenario all over again.

So, right now I do not know what is causing her seizures to be so bad. I would bet that we will be making a trip back to Boston sooner rather than later. And I don't know what they will, or can, do for her. I have done a lot of research and know there are things still left to try, albeit not many and not what I would like.

I thought of all this and more and of all the questions still left unanswered as I lay next to my baby and wondered why her? Why us? Why, why, why?

And then I thought, why not?

Oh baby, baby it's a wild world....

1 comment:

  1. Joanna, I can't begin to imagine what you all must be going through. You have to be on high alert 24 hours a day. I know you have heard all this before, but...if there is ANYTHING I can do to help relieve some of your stress, PLEASE let me know. It's so easy to get "caught-up" in daily life and forget (or put out of my mind) all that you are dealing with. I love you all and am here for you. (lucky you)!!