help please!

[Ashleylk91]

okay guys I need your help more than ever.

My mom was in ICU for 40 days and been in special care for almost 20 for her wounds to heal from emergency surgery regarding colon resection and also has a stage 3 pressure ulcer on her lower back/bottom.

i’ve posted twice before the first post was about me choosing to give her a tracheostomy or not with intubation and the second one was just about a week or so ago regarding the two females that had brought up Hospice to me.

Those two females are the only ones that have been negative to me at all during this two month hospital stay. When her surgeon seen her after the females had brought up Hospice to me he said I have no idea why they would say that she is doing so much better I would 100% continue treatment. She was also wearing glasses watching TV with me had graduated from the ventilator to just oxygen mask over her trach and had a speaking valve and was getting really good.

So let me tell you what’s been going on since Friday of last week.

on Friday, they gave her IV Dilaudid even though I’ve told them multiple times her body cannot handle this. She is 90 pounds and has always had a bad history with Ivy medication‘s because they hit her very hard even if they’re the smallest dose. For reference her first night in the ICU they had to give her Narcan twice for a very small dose of IV Dilaudid. So they gave it to her Friday. It makes her out of it for about 48 hours at least not super out of it but just not normal either. So Sunday just as she was starting to come back around they gave it to her again. Normally she’ll start sleeping it off. She’ll be a little out of it, but she’ll sleep it off . She ended up staying awake for over 24 hours a lot more confusion. So she was still awake come Monday so she was still confused and then Monday to Tuesday she may be got 5 to 6 hours of very chopped sleep so Tuesday she spent pretty confused Tuesday night still didn’t have a lot of sleep still confused then Wednesday she woke up with a fever and it got up to 102.9. They did an x-ray of her lungs and a CT of her abdomen and blood work and it all came back normal. At first they were telling me they thought it was aspiration and just not showing up yet. The fever ended up going away and has been gone since. During this time she had to get restrained because she was pulling at her trach a lot, and had to get put back on the ventilator just due to the confusion her respiratory rate had went up so she had to get back on the ventilator, but she still on the lowest settings. So then Wednesday night we finally get Ativan added to her account to help her calm down. It is IV but it is the lowest dose. So that helped her sleep pretty well Wednesday night. So now we’re on Thursday yesterday her potassium ended up spiking critically high so they gave her insulin and something else and like I said she reacts very highly injected medication’s. So after that, her blood sugars bottomed out to 23 after that for the next hour, they still couldn’t get her blood sugars to stay above 65 but within the hour after that and ever since then so for the last almost 24 hours she has maintained her blood sugars again. Also, her potassium was at 3.1 today so back to fine but yesterday during all this they called me trying to tell me that my mom was starting to die. Because of her potassium and her blood sugars and then they said she wasn’t reacting to pain during her dressing changes. However, I found out that they did the dressing change when she was in the middle of her blood sugar shock so there was a reason she wasn’t experiencing pain or reacting. Last night she was reacting to pain just like normal. And I believe her blood sugars only bottomed out because of the insulin situation. So our main issue was only the potassium which has now stabilized itself again since yesterday.. I just wanna know your guys’ outlook on this. Her surgeon is not a practicing doctor at the facility She’s at, but he has seen her twice since she’s been there the second time being yesterday and I asked him his opinion on this and updated him on everything that had and he was pretty upset, wondering why they would’ve said that to me and told me she was not dying. She still seem a little confused, but she is not as agitated anymore. She still resting today from the Ativan last night, but she still able to come to when they mess with her and she doesn’t look as shocked and Staring around when she is woken.

I guess I just want some hope in my life after them diminishing all the hope I had yesterday. Because they were trying to say her organs are starting to fail when the issue was the potassium and she now seems to be doing fine and they said her kidneys are doing fine and they said her labs are way better today than they were yesterday.

Is it possible it’s just due to the sleep deprivation from earlier this week do you guys have any insight on this?

I did use voice to text for all this. I’ll try to proofread it when I can, but I hope it all makes sense.

[Sepsur]

I’m not medical - just an ex-patient - so I have a very subjective understanding of my ICU experience.

Recovery is rarely linear and the medical staff are occasionally lacking emotional intelligence- which leads to dire predictions falling from their mouths - I think they think it is preparing you for ‘the worst’ - but it doesn’t - it just confuses you.

Try and take each new day as a new chapter because the sands beneath our feet shift all the time - that is the norm.

Let’s hope your Mom regains her strength & independence

[Lux95]

Like Sepsur, I can't offer any medical advice other than to say you have our support and prayers. It sounds to me that the surgeon is both interested and objective. I would consult with him as much as you can.

ICU staff may be reacting to tests rather than seeing the bigger picture - i.e. how is she doing overall. Outcomes are a pretty good indicator of how we respond. I couldn't sleep, so they gave me something that made me nauseous. I refused it from then on. Who can sleep after lying in bed for weeks anyway?

We also had the benefit of a friend who is a physician with surgical experience that my wife could consult on the many medications. The ICU staff in my case were also quite good, and generally hopeful. From what I am told, there was only one or two physicians on call that were difficult and negative. This is something I think should be mandatory for every intensive care unit - have staff that remain positive and don't let egos or negativity affect treatment. The ICU is hard enough on the patient and family.

Continue to advocate for her. Something I noticed in hindsight, conversations with nurses, etc - some of the ICU staff may be encouraged by your hope and compassion. Maybe that will encourage them to give some back. Some seem to forget this is the most emotional, life-changing time for us and our families, when it is just a job to them.

[FamilyHistorian]

critical illness has many ups and downs and recover takes time. In my case I was close to death twice, when I finally started to come round I didn’t sleep because I was afraid of not waking up. I’m not medical but sounds to me that she may be hallucinating and that affects us all in different ways. I tend not to take any notice / compare results as they can be so different for everyone. It is important though that you take care of yourself.