Thanks, guys. I feel like crying just reading all your kind words. I guess I'm extra emotional because this coming Friday will be one year since Dom's accident. We thought he'd be so much farther along than he is, even knowing what the odds were. The trauma team at the ER where Dom was brought after being rescued & resuscitated encouraged my brother to "pull the plug" because they said Dom would have a terrible quality of life, but my brother couldn't do it. We all wanted Dom to have a chance to prove them wrong. Honestly, though, the plug was in effect "pulled" ten days after the accident, when the vent was turned off because Dom was breathing above the vent settings, meaning, he was initiating breaths on his own, so they trialed weaning him off the vent, and he did it with flying colors. Would he have survived if they didn't give him ventilatory assistance right after the accident, I don't know.
I've been an RN since 1991, working in the ER & ICU mainly, but not in a trauma center. My previous career was as a hair stylist, go figure! I like to say I went from kissing butt to wiping butt, lol! Just needed to inject some humor into this sad post! What I mostly saw were cardiac events, ortho issues, strokes, and so on. We never got trauma patients unless the weather was too bad for a medievac to fly from the scene to the nearest trauma center, or someone wasn't triaged correctly at the scene, and brought to us, but then we ended up sending them out to a trauma center or stroke center after stabilizing them. Having said that, I still was well aware of the odds of Dom recovering from this tragedy, but like we all do, I only focused on the stories with positive endings. I spent hours searching online for any "good" story, and did find some. One in particular,
Ikem's Story, on YouTube, is so heart warming, and it really filled me with hope. I would have nightmare thoughts though of patients that were brought into our ER from "nursing homes", now called long term care facilities, as it sounds better, who were in the same condition that Dom is in, non verbal, non responsive, just there. I remember the slang term we had for them, and it now makes me sick to my stomach to think I could have ever thought of a human being in those terms. It keeps me up at night thinking Dom is living this way. I am sad beyond words.
In the few months after Dom was brought home to NJ from Florida he seemed to be making some progress, small though it was, but at least it was forward. Now I feel like he has been slipping backward more and more. I don't know if it's because he's been moved so much since he's been in NJ. This transfer to Elmwood is his seventh move since June. Every time he goes to an acute facility, where we had hoped he'd make more progress, he actually goes backwards. Why? Is it because he doesn't do well on the brain stimulating meds he's given at these places, is it because family can't visit him as often, is it the move that sets him back? So many questions and no answers.
When Dom was at Linwood & Meadow View, owned by the same company, Genesis, his mom was able to decorate his room with posters & photos, and personal mementos. Here at Elmwood, the rooms are smaller, two patients to a room, and there really isn't room to put things. Dom in his wheelchair barely fits in the room. It looks like a hospital room. The rooms at Linwood & Meadow View were much bigger, even when Dom was in a room with a room mate, there were several chairs for each patient's family, Dom's mom had Dom's Flyers blanket over the back of one chair, some Flyers hockey stuff on the bureau, family pics, favorite posters of Dom's, etc. It kind of looked like his bedroom would look at home. Apparently nothing is allowed on the walls at Elmwood, and you're not allowed to plug anything in. My sister had bought a salt lamp for Dom's room when he was at Meadow View, and they had no problem with it. Dom's mom also had a few strings of Christmas lights up too, which brightened the place up. This is what I mean about the difference in facilities.
That is so kind of you! Yes, we use oils on Dom all the time. When he was at the subacute facilities, Linwood & Meadow View, we were able to go pretty frequently, so used oils on him frequently, plus we had a diffuser going several times a day. The staff would turn it on at the times we asked them to, and it would turn off with the timer we set. This is when Dom did so much better! I do believe in the power of essential oils! Every time he went to an acute facility, it was much farther away from us, so we didn't get to visit as often, therefore, Dom didn't get the benefit of the oils like he had been. Plus, forget using the diffuser. That was definitely not allowed, especially if he was in a room with another patient, which is understandable. I became a Young Living distributor in order to get the oils at a discounted price since we were using so much of them. I appreciate your offer though.
I didn't talk about this in my update yesterday because I was too depressed to talk about it, but when we went to visit Dom at Elmwood on Thursday, he was laying all slumped down in the bed, drool hanging out of his mouth onto his shirt, no tv on in the room, curtain pulled, complete silence, and the nurse was standing at the bedside trying to put resting splints on Dom's wrists & hands. He clearly couldn't figure out how to put them on, so I said don't bother with them, as I'm going to cut his nails. He says to me, it will be easier to cut his nails with the splints on. Really? At this point I'm rolling my eyes in my head. So he puts them on, and Dom's fingers are hanging off the splint instead of being in the partitioned finger section, and he, the nurse, walks out of the room leaving Dom slumped & drooling all over himself. While I'm trying to clean Dom up, he, the nurse, comes back in with Dom's tube feed. He's fiddling with the pump for the feed, flushes Dom's peg, NEVER looks at Dom or talks to him, starts the feed, and walks out of the room again. While I'm cutting Dom's nails, I see he is really building up secretions. This bothers me, as previously he had been doing a better job of swallowing his secretions. This is a step backward. When he first came from Florida to Linwood, the speech therapists actually had him to the point where he was swallowing tiny bits of applesauce & pudding. Anyway, I said to my husband that I'm going to suction Dom. As a nurse, I know how to do this, and all of our family has become proficient in doing this now. I see the portable suction on Dom's bedside table, but it's not plugged in, or even hooked up! The tubing is still in it's packaging. He came to Elmwood on Monday and it is now Thursday! WTH! What if they needed the suction in a hurry? What if he started aspirating on his secretions? So we hook it all up and suction Dom. We also reposition him in bed, as he looked so uncomfortable. As I'm doing a massage with the oils, I notice Dom has no ID on him. This is a big NO NO. This will get healthcare facilities dinged big time if this was noted during an impromptu inspection. I search the room, and find Dom's ID bracelet on the bedside table. It is big enough to fit around his calf. No wonder it wasn't on. It would fall off. In three days they couldn't fix this? Plus, a patient is never, ever supposed to be given any kind of medicine, tube feed, etc, without being properly identified, especially if they can't talk. As I'm fuming, an aide comes in with a food tray for Dom and goes to put it on his bedside table. I look at her and say "he doesn't eat"! She says, oops, wrong patient. Now what if Dom was a dementia patient with a swallowing problem, but didn't know any better not to eat this food? Again, no IDing the patient.
The visit didn't start out well in the first place, so I was already in a bad mood when I got to Dom's room. It was the first time I was visiting Elmwood, so wasn't sure where Dom's room was. I stopped at the front desk to sign in, and this nice older woman asks me who I'm here to see. I tell her, she tells me which unit Dom is on, and which room, and gives me a visitors pass. I say thanks, and walk down the hall to my left, looking for the elevator. I keep going down the hall, I don't see anyone, this is at 4:30 in the afternoon, I pass a metal detector, huh?, and keep on walking. I see elevators, so I get in and go up to the second floor. Now I'm in another area with not a soul in sight. I see double doors that say 2 South, which is the unit the nice lady downstairs told me Dom was on. I try to go in, the doors are locked. I ring the bell. Nothing. I ring it again. Nothing. Okay, I'm looking around not knowing what I should do. I see a staff person get off the elevator, so I ask him if he knows how to get the doors to open to the unit. He says yes, but I can't tell you. Okay. I say so how am I suppose to get in? He says you need a badge. I say I don't have a badge. He says I see you have a visitors tag on. Did you go through security and the metal detector? Now I'm really irritated. I'm thinking, is this a freaking prison or a rehab facility? He tells me to get back on the elevator, go down to security, and then I can get in. At this point my husband texts me to tell me he is here, as he was meeting me here when he got done work. I text back so am I, but I can't get in. I march back downstairs, go past the EMPTY security desk, past the metal detector, and back to the front desk where my husband is signing in. I'm telling him what happened, and the nice lady sitting there who WATCHED me head to my left after she told me where Dom's room was located says "oh, you went to the Behavioral Health unit, you need to go to your right". Ugh. Okay, no biggie, let me go to my right. I'm still uncomfortable though that this place has metal detectors!
Then my oldest son & his dad went to visit Dom on Saturday. When they got to Dom's room, again, the same thing. Dom is just laying in bed, drooling all over the place, no tv on, no radio, complete silence, curtain pulled. My son said he felt like Dom was in a mental institution. He tried to clean him up, but wasn't sure how to use the suction equipment. Then staff came in to get Dom out of bed into the wheelchair. A hoyer lift is needed to get people up that are total assists, like Dom is. Apparently these staff members had no clue as to how to use the lift, as it took about 45 minutes, and my son said they kept banging Dom into the wheelchair. He also noticed when they lifted Dom from the bed, the sheets underneath of him were soaked. They finally got him in the chair, but my son says he was never changed out of the wet diaper. Dom's mom is adament that a condom cath be kept on him, and she buys them herself, because only a certain brand fit him well. An aide told my sister on Friday when she went to visit, that she will only use diapers on him, that she doesn't like the condom caths, and that she will just check him every two hours. That is all well and good, but what if he goes a large amount right after you check him? He sits in a soaked diaper for a few hours. That might not be a big deal for patients who reposition themselves, but Dom doesn't. He stays where he is put. Even a newborn wiggles around, so isn't laying on the same wet spot for hours. This would be a recipe for skin breakdown and a pressure ulcer. Of course, my son let Dom's mom know right away what he observed. He also said after they got Dom in the wheelchair, they left him with his head hanging down, instead of propping his head in a comfortable position. My son also told me that when he went to sign in at the front desk he was wearing a winter beanie cap, and he was told to take it off, as no headgear or hoodies were allowed. Again, WTH? This facility isn't even in a bad neighborhood. My husband told me it's because the corporation owns many buildings, and some are in gang neighborhoods, so the rules are the same for all facilities.
My husband has a meeting with the admissions director at Meadow View this afternoon. Praying for a transfer soon. Dom's mom said if a bed doesn't open up at Meadow View soon, she'd send him down to Linwood rather than have him stay at Elmwood, even though it's an over an hour drive away, on a good day, as opposed to this place being only a 15 minute drive. At least he was cared for & cared about at Linwood.
Dom at Elmwood Hills March 17, 2017
. I can not even imagine the continuous pain she must be in. The hope that Dom *might just* walk again someday with the proper care probably keeps her going and she doesn't sound like she's ready to give that up. Who can blame her? Teresa, I really admire you being there for her and for Dom. I think that things are coming to a head when it comes to Dom's long term care and Dom's mom will continue to need your love and strength.
