Hi, it’s Patrik Hutzel here from intensivecarehotline.com with another quick tip and questions answered for families in intensive care.
And here is what she writes. She said, recently my granddaughter began treatment with a pediatric neurologist specializing in epilepsy. After testing and reading results, she was able to determine, these were silent cluster epileptic seizures, while she doesn’t have privileges at the children’s hospital we are at.
The neurologist and team doctors here insist, her EEG was negative for seizures and they believe that tic-like tremors and shaking and teeth grinding and eye movements are withdrawal symptoms. Those gone on for over half an hour or more. They continue her on the clonidine and that’s to date, so that’s somewhat on a positive note.
My granddaughter was on the tracheostomy collar today, off the ventilator for almost a few hours. Praise the Lord! With just the oxygen, she did pretty well except for the tremors. She tired quickly and was returned to the ventilator for support in breathing. I can see the writing on the wall and the doctor’s expressions that they’re talking about us going home soon.
Her mom and I would love that to happen, but she has been intubated three times over the last two weeks. The tracheostomy is a week old tomorrow and her lungs are still very weak. So I guess you can see our concerns. I appreciate any advice safe in finding another hospital, which of course is may, is probably not an option. From Betty.
Okay, Betty, I’m grateful that you’ve written me back and I think I can help you with this situation to take the next steps, whether your granddaughter has seizures or whether they’re silent cluster, epileptic seizures, it doesn’t make much of a difference. She still will need to have them controlled probably medically because otherwise, it’ll be an ongoing challenge for your granddaughter.
You know, and she will need most likely Keppra, Phenytoin, and also some PRN Diazepam and Midazolam when she’s having the acute onset of seizures or the neurological events. The clonidine has too much of a sedative effect and you want your granddaughter, as I mentioned in the other video, you want her to be awake enough so she can breathe on the one hand.
On the other hand, you don’t want the seizures to rule her life either. So it’s a very fine line to manage the seizures with medications that don’t make your granddaughter too sleepy. It’s great that she’s been on the trachy collar today and off the ventilator for a few hours. Now, this is a good sign and I’ll tell you why. If your granddaughter can, you know, even if she stays on the ventilator, as soon as the seizures are controlled, she can go home, right? And I tell you how, even if she’s ventilated and has a tracheostomy.
So she can go home with a service like intensive care at home. For example, intensive care at home provides 24- hour, seven days a week, intensive care nursing at home for adults and children with tracheostomies and ventilation.
Now, this is a much better option than being in ICU. I mean, as you know, ICU is not the right environment for your granddaughter. So by going home with ICU nurses, the seizures can be managed, the ventilation can be managed. And you can actually leave the hospital, which is what you want and what your granddaughter wants.
So go and check out intensivecareathome.com and give me a call on one of the numbers on the top of the website, or if you have any questions. If you who’s watching this video and you have a loved one in intensive care, send me an email to [email protected] with your questions or simply give me a call on one of the numbers on the top of the website at intensivecarehotline.com
This is Patrik Hutzel from intensivecarehotline.com and I’ll talk to you in a few days. Take care.