My mom spent 2.5 weeks on the breathing tube due to a neurological problem caused by viral meningitis. She has a slew of other health issues right now as well such as acute kidney failure due to lupus and double pneumonia, but the meningitis is the primary cause of her breathing difficulties (they pneumonia was caught & treated very early so her lungs are still in good condition). She started showing good improvement within the last week. She was doing almost all of the breathing on her own. She was passing all her breathing trials. She was more alert and able to follow commands after spending about a week and a half being almost totally unresponsive. In the last couple days, she has been struggling with her breathing again. For the most part, she is still able to breathe on her own, but she will have moments when her breathing becomes more labored and her heart rate increases. Her doctors think it’s best she be intubated again. It’s been about a week since the tube was removed, and it already has to go back. I feel devastated. I see that re-intubation isn’t uncommon in the ICU, but it’s still a lot to mentally process. Despite her improvements last week, her doctors are saying they don’t know if she will be able to improve more mentally and get back to where she was a few weeks ago (talking, engaging in conversation, etc.) One of her nurse practitioners told me she doesn’t know if my mom will ever mentally recover from this...I’m just not sure. We don’t want to keep putting her through this because we know this is all so awful, but we also don’t want to give up on her. We understand she has many very serious complications right now, but my grandma and I feel that my mom just needs more time. At first their concern was that she wasn’t waking up at all. Then, after she started opening her eyes, their concern was that she wasn’t following commands. But she has been able to do that. She has gradually been able to do these things, it’s just taken her much longer than they thought it would. So it makes me very hesitant to give up on her...they haven’t done any MRIs yet either. And I’ve read many stories on here of people detailing their experiences with meningitis and most, if not all, say that it takes much longer to recover than doctors would have you believe. I just don’t know. I’m feeling very lost and emotionally exhausted. My mom is my everything. I hate seeing her suffer, but I also don’t want to give up on her....we are supposed to be meeting with her doctors this afternoon to discuss. This meeting was already planned prior to them deciding to intubate her again, but I’m sure this will be discussed. I absolutely dread these conversations....are there any questions we should ask them?
Mom has to be intubated again; feeling confused a... - ICUsteps
Mom has to be intubated again; feeling confused and distraught.
An update: I saw my mom this morning. I’m not technically allowed to see her due to COVID regulations, but due to her condition her nurse practitioner thought I should see her. Frankly, my mom looks better than she did the last time I saw her. A couple of weeks ago, I was called in for the same reason. Poor prognosis. When I arrived, my mom wasn’t conscious and wasn’t responsive to me calling her name. This morning she was wide awake, and even though she isn’t speaking yet I could tell she recognized me. She followed me with her eyes as I moved around her room. I showed her pictures of her cats, and I could tell she recognized them as well. She even started tearing up a little. She is also still following simple commands when she can muster the energy for them (squeezing hands, moving her fingers, wiggling her toes, etc.) For this reason, it baffles me as to why the nurse I spoke to is so sure my mom isn’t going to make it. She might not be back where she was before she got meningitis, but she’s better than she was 2 weeks ago when she was completely unresponsive. The nurse kept asking me what we, as a family, want to do. I told her to continue treatment, of course. She made a comment about “at what point are they doing things TO her and not FOR her” which really confuses me. Seeing my mom, if anything, assured me that she’s still in there. She’s still fighting. They say she’s responding to treatment for the pneumonia, and again they caught it early enough that it’s mild. Her lungs are actually great. Again, I realize she is still very sick, but the nurse was acting as if my mom was brain dead with 0% chance of recovery :/ I know healthcare workers try to prepare you for the worst, but sometimes it’s really baffling the way they see things. Her improvements might not be great enough for them, but for us they are tremendous and give us hope.
Your mom is still there keep fighting. You know what’s best for your mom. I too am struggling with my dad. Mentally devastating for me . But we have fight and stay strong. Many prayers go out to you and your mom.
Yes, this situation is very mentally devastating. I struggled often with anxiety. It has been particularly bad this year to a combination of things, but this is by far the most stressful thing I have ever experienced in my 24 years. But like you said, we have to keep fighting and stay strong! For ourselves and for our loved ones as well. I am praying for you and your father as well xx
Hi @ChrissyJames
I think the staff don’t always remember that we are 3dimensional people with feelings & emotions. I am constantly surprised at how cavalier they can be.
All you can do is carry-on fighting your Mom’s corner whilst she can’t.
Let’s hope that you get a better report tomorrow.
Go with your intuition
Their words shock me from time to time. I understand they try to prepare you for the worst case scenario, but some lack tact. Many of them, too, say they understand. But I really don’t believe this is something you can truly understand unless you experience it first hand. That’s why communities like this are so important.
Do not give up on her. You know her. Often the body needs a lot of time and it sounds as if she was taken off the ventilator too quickly for her lungs. My husband was on a ventilator for 61 days and 40 of those after a tracheotomy. It can be a very slow process but they have to wean very very gradually. They can hear just fine so keep talking and reassuring her even if it’s by phone. The fact she is following commands does not indicate brain damage so whilst she may be anxious for a while and have emotional challenges as she recovers afterwards there is no reason why mentally she can’t be as she was. Keeping everything crossed. Xx
Yes, I’m thinking they weened her too quickly. She was on the vent for about two weeks, and it was during her 3rd week that they started weening her. But I think they probably just took her off too quickly. And yes, I know she will face many emotional challenges...prior to this sickness, my mom already struggled with anxiety and depression. It’s too early to tell how much of this she will really remember, but I know in the long run it will be difficult physically and mentally for her to recover. But we are here to support her and uplift her as much as we can during this process. Although I’m not able to visit her regularly, my grandma is allowed to be with her as she is the one, designated visitor they allow. Having her mother there helps my mom a lot.
Keep trying to stay positive. That’s all you can do. It sounds like your mum is doing her best to fight and prove the doctors wrong.
That’s really kind they have allowed you to visit. I think that’s something no medication can offer her: Love.
God bless you and your family at this difficult time 🙏🏽💜🙏🏽
I’m really glad I was able to see her myself. And I know she recognized me. That within itself gave me a lot of hope, despite the negative talks with some of her doctors. Thank you for your blessings!
Hi!
From your words it looks like your mom is still fighting and now it's not the time to give up on her yet. I am surprised the nurse dare even say something like that. All doctors and nurses I met were very nice.
Of course don't give up hope, it's good she is conscious and recognise you (my dad is still not responsive after 17 days sedated and this is the biggest worry).
Sending hugs to you and your mom!
The nurse’s words surprised me as well....she really upset me if I’m being honest, but I am trying not to dwell on negative emotions. Thankfully, not all of my mom’s nurses or doctors are this way. Some of them are just as hopeful as we are as they have seen her make small improvements (despite having to be intubated again). I am praying for you and that your dad wakes up soon! Try to remain positive, though I know it is difficult. We are here to support you xx
Thanks a lot, I hope your mom continues to improve!! Xx
Stay strong and whilst your mom is fighting, you have her back!
Sending positive vibes and hope she has a good day tomorrow💜
Yes! Now, more than ever, we must stay strong and advocate for her!! Thank you for your blessings xx We welcome and accept all positive vibes and prayers. You all have been so kind (and informative)!
Hope you’ve had better news 💕 she’s fighting 💪💪 stay strong and positive and sending all my love xxx
Thank you ❤️ my mom is stable now. She is lightly sedated and intubated, so she spends most of the day sleeping but we believe this will take additional stress off her body so she can heal better. When she can, she still follows some commands like squeeze hands or following with her eyes. I feel so badly for her. I know she hates it in the hospital. When I was allowed to see her the other day, they went to use a tube to suction mucus from her throat since she was too weak to cough it up on her own and she closed her mouth immediately because she hates that suction tube 
But I was actually pleasantly surprised by her reaction time. Another sign to me that she is still in there fighting. 💪
Hope your mum has had a better day today and is getting stronger . Stay strong yourself , and keep thinking positive thought, sending lots to you xx
Thank you 💕💕 She is doing better today. Still on the tube but vitals are stable and she is responding to commands still. Thank you again for your kind words and support xx
Hi I have talked earlier about my wife and having her bowel removed. ,she has had the same issue of Coming round with mental memory problems then a bit of an improvement for them to then say her lungs are failing ,then the breathing improved a little only for her mental state to improve
We are at end of life in an hospice and she hasn’t long left ,as soon as one issue improved another issue worsened, my family were seeing it as the doctors explained and want it over so as she doesn’t suffer,I am maybe being selfish in not wanting my wife to die allied to me not wanting her in pain
Best of luck with it all ,I personally feel more could have been done but all the experts and close family think the hospital have behaved perfectly
Lots of love and thought
Steve
I think you are amazing offering others support whilst you are in your deepest and darkest moments. Sending positive thoughts and love to you. x
Oh Steve,
I don't know what to say, I feel deeply saddened reading this!
Sending you strength and lots of love x
Sending your love and thoughts to another when you are going through such an unbelievably difficult time yourself...you are incredibly kind and selfless. Thank you so, so very much. I will be sending you and your family many prayers, love, and strength.
Thank you so much x
An update: my mom’s respiratory team said they believe her breathing troubles are more so related to a build up of mucus in her airways due to pneumonia rather than her not being able to breathe because her lungs/brain aren't working. She’s able to breathe with very minimal assistance from the breathing tube most hours of the day; her breathing only gets worse after mucus builds up. She is too weak to cough to expel the mucus herself, so they have to use a suctioning tool to remove it from her...
Also, does anyone have any experience with wounds that won’t heal? My mom developed an ulcer at the first hospital she was at...It developed into a deep wound that resulted in an infection. Thankfully, the infection is done and cleared; however, her wound isn't healing properly which means that over time, it’s continuing to get bigger. It’s so bad, that part of her bone is now exposed...her doctors claim there is nothing they can do and the wound isn’t healing because her body is expending all of her energy fighting infections. I’ve tried to do my own research and my grandma and I are seeking second opinions from other doctors at the hospital, but I was curious if anyone here has any experience with that?
Hi @ChrissyJames
I think that’s a really good idea to get a second opinion. What your team says about the body expending all of its energies elsewhere makes sense - my trachy scar took weeks & weeks to heal over. Hopefully another doc will come up with a solution for your Mum’s wound. After my uncle had bowel cancer - the wound wouldn’t heal - eventually they resorted to honey ( which worked).
Suctioning of the lungs is really effective but thoroughly unpleasant to experience.
Hope you get some progress
Honey? As in...honey from bees? If so, that is fascinating! I will have to do some research on that... and yes the suctioning is very effective, but my grandma and I are aware of how much my mom hates it. She had it done once while we were on the phone with her and all we could hear was her groaning in discomfort. And when I was allowed to see her, they went to use the suction tool on her and she immediately closed her mouth. Praying she gets to a point where she won’t need the suctioning soon since it is so unpleasant.
Yes, but at present the suctioning is essential.
My uncle’s incision wouldn’t heal for months - they tried everything. Eventually they applied honey and the dressed wound as normal. It took ages to heal but eventually it worked - I wasn’t assuming this would be suitable for your Mom necessarily - just an illustration of there being less obvious solutions.
I cracked my head open about a month ago, because I’m on a trial leukaemia drug which thins the blood, even after they had stapled wound, it took another 40hrs to stop bleeding - as you can imagine this was a fairly messy affair. Anyway after 5 dressing changes and a whole lot of umming and aahing - a new doctor decided to place an adrenaline patch on the wound ( which worked straight away). Hopefully someone will come up with a better solution - surely having your bone visible is not ideal - especially if you are attempting to stop infections 😱
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