My Mother-in-law is in ICU with seizures and a brain tumour! She’s not waking up, can she survive?

Published: Fri, 07/15/16

Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!

This is another episode of “YOUR QUESTIONS ANSWERED" and in last week’s episode I answered another question from our readers and the question last week was

My 76 year old Dad has been in ICU for one month! He can’t be weaned off the ventilator and his tracheostomy, what are the alternatives? Help!

You can check out the answer to last week’s question by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer another question from one of our readers and the question this week is

My Mother in law is in ICU with seizures and a brain tumour! She’s not waking up, can she survive?

This question from Kelly formed part of a 1:1 phone counselling/consulting session with me.

Kelly describes her mother in-law’s situation as follows

Hi Patrik,

my mother-in-law has been in Intensive Care on a ventilator for over two weeks.

She had a GBM(Glioblastoma= brain tumour) two years ago that was grossly excised.

She was admitted via the ER(Emergency room) with refractory status epilepticus (she seized for two hours straight and on and off for a week solid)and was immediately placed on a ventilator.

Although, the heavy sedation has been stopped approximately one week ago she will only breathe on her own for approximately two hours a day before she gets tired.

She also is not very responsive to stimuli. She is not waking up enough for the doctors to feel comfortable weaning her.

They are now wanting to do a tracheostomy tomorrow morning as well as placing a PEG tube for feeding.

I guess we are trying to figure out if she'll ever get off the ventilator and how do we determine if there is any brain damage caused by the prolonged refractory status epilepticus(= prolonged seizures)?

I have also left my phone number and I can be contacted via my cell phone.

Thank you

Kelly

Hi Kelly,

thanks for your question and thank you for using my 1:1 phone counselling and consulting service.

I am very sorry to hear what you and your family are currently going through.

It sounds like your mother in law is in a very challenging situation.

You are mentioning that your mother-in-law has had severe seizures for almost a week before she’s been admitted to Intensive Care.

During this week of, on and off seizures at home, a lot of brain damage might have been caused and it would have been beneficial if your mother-in-law would have been admitted to Intensive Care much earlier to manage the seizures and prevent some of the brain damage that may have been caused during this time period!

For now, she should have a CT of her brain and an EEG to determine the focal points of the seizures and also to determine whether the GBM is the reason for the seizures. GBM's can be very aggressive and it may have caused the seizures.

Also, keep in mind, waking up after head/ brain injuries- including seizures- may take time and it can sometimes take many weeks patiently waiting for your mother in law to "wake up", depending on what's exactly happening in her brain.

Keep in mind your mother-in-law would have been given some heavy sedation to manage the seizures and this would have included Midazolam(Versed), Fentanyl or Morphine for pain, Keppra (levetiracetam) or Dilantin(Phenytoin) for ongoing seizure management and therefore “waking up” would not be straight forward and you can expect a delay.

Here is an article/video that explains more about “waking up” after a head or brain injury and seizures fall into this category!

HOW LONG DOES IT TAKE TO WAKE UP FROM A TRAUMATIC BRAIN INJURY OR SEVERE HEAD INJURY?

It's difficult to predict the future, however, doing a tracheostomy might be the right thing to do, if you want to have more time.

Related article/video:

HOW LONG SHOULD A PATIENT BE ON A VENTILATOR BEFORE HAVING A TRACHEOSTOMY?

If you don't want to have more time and if you think that your mother in law might not want to live with a tracheostomy and PEG given her current circumstances, then you should make this clear to the Intensive Care team.

It’s a difficult decision to make especially since your mother-in-law can’t make any decisions herself.

Is this something that you and your family have discussed in the past?

Did you ever discuss the worst case scenario with your mother in law, what she would want if she ever came into this situation?

Depending on the answer to this question, you should proceed accordingly.

Again, your mother in law may not come off the ventilator ever again, however you and your family may want to spend more time with her. It's a decision you need to make.

You may also- if time and her condition allows- prepare for an end of life situation on your terms and not on the Intensive Care team's terms.

And by that I mean looking at alternatives such as end of life home care if that’s what you want.

Related article/ video:

CAN YOU GO HOME ON A VENTILATOR?

Have you also considered that the Intensive Care team may want to do a tracheostomy and PEG in order to occupy one of their beds that's currently empty and make some money?

I'm not suggesting that they do, however in a situation like this, you need to look at all ankles and all possibilities. It’s really important in such situations to work out where the Intensive Care team stands and why.

You may want to buy time with a tracheostomy and PEG and have your mother-in-law pass away at home and not in a sterile ICU environment, in some countries, INTENSIVE HOME CARE is an option, including end of life situations on ventilators, check out INTENSIVE CARE AT HOME

Those services may not be available in your area, however you should start thinking about a variety of options in your situation.

In any case you and your family need to make informed decisions, have PEACE OF MIND, control, power and influence no matter what this situation is going to throw at you.

See how the next few days go after she had the tracheostomy and the PEG insertion.

The tracheostomy and the PEG will almost certain buy your mother in-law time and it certainly will be a good time to assess how she might go long-term.

The most important thing to know is really that she may wake up in her own time if the GBM is not too aggressive.

This is what it’ll come down to. Once the sedatives are out of her system your mother-in-law will need to time to heal and “wake up” in her own time and the tracheostomy and PEG will give her the chance to do that if the GBM is not too aggressive.

If the GBM is aggressive as they tend to be, it’s very likely that nature will take its course irrespective of the tracheostomy and the PEG. If that’s the case make sure that your mother in-law is getting good care and is not suffering.

Here are some recommended resources that will help you in your situation. A lot of the questions that you are having will be answered in those resources