Well they were slowly getting worse and worse and everyone was watching them and concerned about them too. The PICU team called in the Pain Team to see if it was possibly the pain meds in the epidural causing the jerks. Well the team researched and they found that its rare but it ccan happen. So we said to them that if anything is rare it will happen to Broc as that is his second name.
We played with the idea of stopping the pain meds to lessen the jerks but felt that the jerks were not so bad and not so often and we had just reached a great pain level for him to feel comfortable that they didn't want to take that away from him.
Well fastforward to yesterday morning.His jerks were more and more and making his pain worse and worse.
They were also becoming more violent and making him sit straight up in bed and stare at the ceiling.I was panicking cause he is not allowed to sit up and use his abdominal muscles by himself until 4 weeks.
Finally the nurse called the PICU resident to come in and see us as she was getting concerned so he came to talk to me and while he was talking to me Broc has about 7 in a few minutes. He was concerned enough that he went to consult with Nuero.
As soon as he left Broc started shaking uncontrollably.All his vital signs went crazy and all his alarms went off.I yelled for a nurse and pushed his call button but before I could do that about 6 nurses came running in.His eyes were rolling in his head and we had to hold him down to the bed.It looked like he was having a seizure. This went on for about 4 mins and then in came the VEEG tech to hook him up so that they could record all these episodes.
In the mean time the PICU resident had spoken to Nuero and they ordered a VEEG stat for him.They still felt it was the pain meds in his epidural that was causing the myclonic jerks.
So anyway after the 4 minutes the tremors carried on for another 2 mins and then he fell into a deep sleep.
They hooked him up to the EEG leads and recoreded him for an hour.We had to wake him up and let him watch a short video on my phone and then he closed his eyes after about 5 mins and then the jerks started again but this time they were really violent and he was having head shaking and pulling up his shoulders too.
Once it was all recorded and they got lots of info they unhooked him and he went into a deep sleep again.
A few hours later the resident came in to give us the news that we didn't want to hear.The resutls were inconclusive but they wanted to start anti-seizure meds anyway to stop them from happening cause when he was having really big ones he would sit up in bed by himself and he could injur his internal stitches.
Once he was given the dose of anti-seizure meds he slept so well with no seizures or jerks. He did wake up when they bathed him and then went to sleep after that.He is still sleeping this morning and only roused a little when they did his labs this morning.
The link above is a video of some of the activity he was having yesterday.
Update:
The new resident just came in to tell me that they had a Neuro read his EEG and it was seizure activity that he was having but they are not sure if its seizures or if its neuro-toxicity from the meds that they took away.But either way they will watch him today to see how he does.I guess Neuro is going to come by and talk to me today to see what the plan will be for him.
All in all a very scary day yesterday to say the least but I think today will be better.
I will update more once the PICU ,Pain and Vascular Team come by.
Thank you for all your love and support.Even to the ones that are giving it via e-mail,skype,prayer.
Thank you too for my mom and dad for being with me yesterday via webcam. Mark and I truly apprecaite all that you are both doing for us.We love you very much.
Ohhh - so sorry he had such a rough time!
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