Friday, January 21, 2011

48 HRS...

Tuesday 8:51 a.m.
8:56 a.m.
administered Diastat
continued seizing.
9:01 a.m.
gave 2mg of Ativan via G-tube
continued seizing
9:09 a.m.
seizure broke
9:10 a.m.
another seizure
9:11 a.m.
seizure broke
9:12 a.m.
another seizure
9:14 a.m
seizure broke

By this point Tessie had all the meds that I could give her so hopefully she was finally done seizing. The reality is, if we lived on the mainland, this would have been a trip to either her pediatrician or the E.R.

I called Sheila.

The rest of the day Tessie was not a happy girl. She looked awful, she smelled awful because of how bad she sweats during seizures, and she felt awful. I personally do not think that the Ativan reacts well to her and that it makes her feel sick and jittery. If Tess is capable of having anxiety, it would be the word that I would use to describe her after she has had Ativan. Anxious.

Ironic, isn't it? A drug intended to calm the system makes her's go into hyper drive.

She looked like she had a few petite mal seizures a few times throughout the morning but I really wasn't sure so I never called the doctor. I felt very uneasy however. And by bed time I decided that Tessie needed to sleep with me so that I could keep an eye on her during the night.

And what a long night.

11:00 p.m.
Tess is awake and unhappy.
12:00 a.m.
Awake and unhappy.
1:00-4:00 a.m.
sort of sleeping between bouts of whimpering.
4:00-5:00 a.m.
fully awake and crying.

Due to the Ativan, she couldn't sleep and her belly was upset and she just felt crappy so she was very fidgety and restless all night. Even crying at one point. That is a heartbreaker. Tessie almost never cries so when she does you know something is wrong. But what? That is always the mystery. I did what I could and she finally fell into a good sleep around five a.m.

All day Tess watch. Is she tensing up? Is she getting ready to seize again? Is she sick? Should she see Jen? Should I call Boston? Am I imagining half of this? The watching and waiting are exquisitely intense for me. I feel like every decision that I make is literally life or death and that leaves zero margin for error. Exhausting does not begin to describe how it feels some days.

Even Charlie was worried by Wednesday night because she was still not acting right. And he hardly ever outwardly expresses his worries about Tessie. That did not help my anxiety level, let me tell you. But we put her in her own bed after hooking up her alarm and hoped she would be better by morning.

Thursday 8:36 a.m.
Tessie's alarm is going off but I could see her in the monitor and she looked okay. I figured the probe had slipped off of her toe. But it kept alarming. Hmmm...
8:37 a.m.
I go in to see Tessie expecting to find that the alarm is misreading only to find that the alarm is accurate and her oxygen level is in the low 80's. I quickly grabbed her jump bag to get the oxygen started on her and when she went into a full blown seizure. A bad one. I start timing.
8:40 a.m
Sheila arrived from ferry and I yelled "She's seizing!" Sheila ran in and immediately noted that Tess had her jaw locked shut which is why, even with the oxygen on her, I could not get her stats above 92. She shoved her knuckle into the side of Tessie's mouth and her stats immediately improved. Holy Scare Batman!
8:42 a.m.
Diastat administered
continued to seize
8:47 a.m.
2mg of Ativan given via Gtube
8:51 a.m.
Seizure broke and I promptly burst into tears.

Poor Sheila. Dealing with a sick kid and now,a hysterical mother. I think I knew it was going to be a rough day but I had no idea how rough it was about to get.

Tess began having petite mal seizures and wasn't stopping. About every fifteen minutes or so they were coming. We had given all the meds so Sheila paged out the pediatrician, Dr. Stephenson. He got the lowdown on what had been going on and told her to give her another 2mg of Ativan.

I burst into tears. Again. Sheila told him that hearing that scared me enough to make me cry (remember, I do not think she reacts well to that drug, plus it depresses breathing and how much more could she take before she stopped breathing?) so he, being the kind soul that he is, told Sheila to give another dose of Diastat instead in then call him back in a half hour. If she was still seizing we would be flown off the island or transported by ambulance on the ferry.

Sheila gave Tess the med and told me I had about twenty minutes to shower and pack. I got busy.

10:20 a.m.
the second dose of Diastat seemed to calm her down but, after discussing everything with doc Stephenson, he decided he needed to see her and we thought she was done seizing finally so we figured we could take her on the ferry in my van.

During the ferry ride we thought we saw a couple more petite mal seizures but nothing too scary although we were glad we were heading to the mainland.

12:38 p.m.
as we are getting Tessie back into her car seat to go to Sheila's to wait for our appointment with doc Stephenson, Tessie had another scary seizure. "What do we do?" I asked Sheila. "Either E.R. or Dr. Stephenson's now!" She got the oxygen on Tessie and I sped out of the Rockland ferry terminal and hit every single rotten, sucky, horrible, red light on the way.

We went screaming into Dr. Stephenson's office and I told Sheila to just get her in there and I would get the car parked and locked in be right behind her. She ran in and they whisked Tess to a room.

12:46 p.m.
Seizure broke
Dr. Stpehenson came right in and did an exam while singing to Tessie, "Tessie's my girlfriend, don't tell my wife!", and, after not finding anything immediately wrong, asked us to stay in his office for a while if we didn't mind so he could keep a close eye on her and call her doc in Boston to collaborate. No problem!

2:45 p.m.
We leave Dr. Stephenson's office with a plan of attack for the night/weekend and an appointment for Tessie in Boston on Monday. He and her Boston doc decided that since we were staying with Sheila, Tess did not need to go into the hospital unless she seized again or unless I would prefer her to be there. I said no, I was fine at Sheila's. We did have to go get bloodwork done and they made some med changes and then we went to Sheila's and got settled in for the night.

Tessie had another day of feeling crappy from everything and Sheila and I were both fried. But so far so good. Tessie made it through the rest of the day and last night without any real trouble, other than fussing from feeling terrible however, I am worried about tomorrow morning because 48 hrs seem to be the magic time between seizures and that will be at 8:36 in the a.m.

I am still at Sheila's as I write this because it is storming out and I have been told by the doc to be off the island with Tessie during bad weather (and it's only January. It's going to be a long winter I am afraid), and because of the potential for another seizure in the morning. Plus, he asked me to call him before I took her back to the island.

I am really hoping that we can go home in the morning. I have two other girls who need me too, and I need them not to mention my hubby. Plus, Blake and Ellie have a basketball game that I really hope to make it to in the morning.

Hope. That is the key word. I hope...for lots of things...

1 comment:

  1. Poor little thing! We have been there. Bethany used to need up to 80mgs of diastat some days. She needed it so often that she actually became addicted to it. Now with the addition of Onfi, she hasn't had a seizure in 6 months! We are hoping it lasts. Hoping and praying that your little one stops having seizures too.