I’m sitting here at Texas Children’s Hospital, 10th floor. Next to me is my beautiful little girl, Hannah, who is has an IV going in each of her hands, an oxygen mask over her face, an EKG machine and pulse oximeter machine going, two bags hanging from the IV pole, and a separate box on the IV pole for administering medicines. She has been passed out for most of the day, but when she is awakens, she does not even recognize me or respond to me.
These past 24+ hours have been a true nightmare.
It all started 4 or so days ago, when she got a runny nose, which turned into her having a lot of trouble sleeping due to congestion. She would sleep for 5 to 15 minutes, wake up gagging, and then go back to sleep a few minutes later. After two nights of that and a rough time at her infusion on Monday with gagging on her secretions, we saw Dr. Bhakta, our pediatrician, that afternoon.
Hannah’s lungs sounded clear, so we thought it was an upper respiratory problem. He gave her an albuterol treatment at his office, which went fine. It was then off to get a chest x-ray to rule out pneumonia, especially since she is at high risk for aspiration pneumonia because of her nGD. Got a call from Dr. Bhakta a few hours later saying that her chest x-ray was clear and to continue on the nebulizer treatments.
About 6 o’clock, Daddy and I started giving her the treatment. In true Hannah style, she fought the treatment and started throwing a tantrum, getting red, and she started to hyperventilate.
Then, her whole body started to shake, she went rigid, her face was turning blue, and became completely unresponsive to us. Even with our oxygen at home, she was still having this episode. About 3 minutes into it, we called 9-1-1. The ambulance arrived in a couple of minutes, and we went off to our local ER. In the ambulance, her oxygen sats were only in the 50s, and they felt she was having a seizure.
We got to the ER, and that is where it all became surreal. There were about 8 or so medical personnel working on my daughter. By this time, her lips had started turning grey, and they were all doing dozens of things. I kept hearing orders being given for blood work, different drugs, oxygen, racemic epinephrine, IV placements, pupils, neuro exams…so many things going on, it was just hard to comprehend. I remember standing there and trying to find a place for me to fit in next to the bed by her face so I could just touch her face.
During this time, her venous blood gas came back with her CO2 at 127. Way too high. They wanted to intubate her. I begged the ER attending to please strongly consider the ramifications of doing this, and I explained to him how children with nGD have a much more difficult time being extubated than normal kids. He was very understanding, and he was willing to give her 30 minutes to see if it would go down. He wanted it under 100.
At the 30-minute mark, it was 119. During this time, I called Dr. Roy, Hannah’s ENT, on his cell, and I asked him to talk to the ER attending and if he felt that it was justified for Hannah to be intubated, I would do it. He did just that, and he and Dr. Roy both agreed to give Hannah some more time to get it down. It was after this that I found out that Dr. Roy was not even in town, but I am so glad that he was there for us.
So 30-minutes later, Hannah was doing much better. She was postictal from the seizure and from the Atival and other seizure drugs she got. But she was comfortable, and she had good color. Best of all, her CO2 was down to 57. Still high by ‘normal’ standards, but it was enough that Hannah did not have to be intubated.
It had already been decided early during the ER visit, that Hannah would be sent downtown to TCH to have a neuro workup to see if we could get more info about this first seizure and because her seizure lasted more than 15 minutes long. The ambulance service picked Hannah and I up, and we headed downtown, through a thunderstorm, to Texas Children’s Hospital.
(more later, I’m tired. If you are on facebook, then you are already up to date)
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