First Time in the PICU

[Guest1004426]

If this doesn't go here please move it! I know this is a forum for nurses and I'm not a nurse but I don't know where else to ask these questions! After typing I realized this post is super long..maybe just read the TL;DR and skim for details?

TL;DR: My brother, who has never been sick, is in the PICU for a brain mass. It's been extremely difficult and my already paranoid/suspicious mother does not trust our nurses and occasionally doubts them/does things without telling anyone/holds back information. She also seems to be rushing his recovery. The nurses sometimes don't notice things or at least don't act on them without prompting (like low HR or low resp rate, but they otherwise do a good job. Is she right to be concerned about his care? Am I being too harsh? What should we expect of a chunky preteen boy four days out of a craniotomy?

My brother was put in the PICU for a brain mass thursday, and had surgery friday. It's been extremely stressful, especially since up until the moment they did the MRI my mother thought he just had a flu/stomach bug. I've tried to be understanding, and I am understanding for her. However, she has always been a 'quirky' person...by quirky I mean extremely paranoid, micromanaging, suspicious, and unable to accept criticism.

Those personality traits are coming out the longer we stay and the better my brother gets. She doesn't see herself, but from where I'm sitting she's: rushing his recovery, judging every decision the nurse makes/holding them to the fire for anything that's not done perfectly, making it very obvious she has a favorite nurse already, and sometimes playing doctor [this is partially because she's a healthcare admin major and now thinks she's essentially a nurse]. If the nurse forgets some tape under a blanket, she's a mess. If she has to ask someone a question, she doesn't know what she's doing. It's too much.

I'm not saying all this just to bash or complain about her, I just want to give some background. I personally feel we've been blessed in many ways. His surgery was just four days ago, and he's already moving all his extremities, he said "no" earlier, his vitals are great, and his nurses are amazing! They prayed for him together multiple times during the shift, talk to him, basically they are doing their jobs. Yes, sometimes I might have to mention his HR looks low or something, but I don't know whether it's not actually an issue and they're humoring me by doing something OR they really did miss it. Either way, I don't want to hang them for it.

So I guess I'm looking for advice/venting a bit. I hate arguing during this trying time, but every time I'm alone with my family they are either complaining about the nurses ("sharing observations") or worrying about recovery (and not from a place of concern; he needed speech therapy growing up and having to do it again is going to be stressful). I don't feel it's warranted, but I'm also not here slightly as much.

I realize not all of my questions can be answered since you guys aren't actually his nurses, but.

1. Which comes first, eating or recovery? Eating would help him have the strength to move more, but they don't want him to eat until he's moving more/swallowing often.

2. Is morphine okay? He went from fentanyl/vercet and a tube to extubation and prn morphine (don't know how much). No one in our family ever went to the doctor and now we're here so excuse my ignorance about it. He just got a dose now and he's completely asleep.

3. He's a very tall, very big (82ish kg) preteen boy. His HR dips as low as 47 sometimes. Is this the medicine? Should we be worried?

4. How long do biopsies take? They should've sent over the tissue since Friday but we still don't know exactly what he has. We also haven't seen any MRI/CT scans or even his chart.

5. Remember how I said mom's quirky? That includes the Melania Trump syndrome..or really any parent I guess. My brother has autism and ADHD. He's somewhere between moderate and high functioning, closer to moderate (he doesn't understand abstract concepts, poor math skills, can't tie his shoes all the time, BUT he can hold a decent conversation, was talking about memories recently, and plays basketball pretty well). My mom has not mentioned this to the nurses or doctors at all. She took him off his ADHD meds a long time ago, which I was semi-okay with because I know they made him angry and moody sometimes. But the other shoe never dropped; she still has the same expectations of him without meds and it's just not possible. He struggles to sit still and focus.

The autism will never 'go away'. He might get better but most likely I will be taking care of him for the rest of my life. She will not, so it's annoying to me that she's pretending he's "healed" and that being autistic was a phase of his childhood. She doesn't want the nurses/doctors to "label" him but I feel like with something like a brain injury it's important to know that this person has shown signs of autism their whole life; perhaps it's something to do with the tumor??

[JadedCPN, BSN, RN]

Per the TOS, we are not allowed to give out any medical advice. These are all questions that should be directed to his medical team.

[NotReady4PrimeTime, RN]

As pointed out above, it is beyond the scope of this site to provide medical/nursing advice. Please don't take that as a criticism, it's simply the way it is. Your heart is in the right place; perhaps if you spoke to the patient care manager of the PICU your questions and concerns could be addressed in a much more helpful way than anything we might have to say here. Best wishes.

[Esme12, ASN, BSN, RN]

Oh honey ((HUGS)) I am so sorry you are going through this...but as you see we cannot give medical advice.

Please ask to see the patient advocate to request a family meeting with the MD's. If thy don't have a patient advocate ask to speak to the supervisor....they will be the ones who know your brothers case. I will say a prayer and give positive vibe your way.