Ltac really that bad?

[Scidaughter2]

I would appreciate KLD’s opinion on this… ideally Magee can take my dad and then have him transfer to Augusta VA afterwards where he can receive additional rehab and they can help coordinate transition into my home/care. The alternative is waiting out VA in a Snf. Should I push hard for Magee to accept him or should I hold out for VA to have a bed? Last time I checked it was at least 4-5 weeks wait. Magee does want us to agree to discharge him to a Snf though, so if VA is still not ready for him after Magee there’s still a chance he will have to stay in a Snf. Thank you.

[Scidaughter2]

Tampa and Augusta VAs have accepted my Dad but they have waiting lists. Tampa is smaller and less likely to have beds soon. We are putting our faith in Augusta they have 40 beds (normally 60 but they are short staffed) and he is 7th on the list.

Meanwhile, I’ve been talking to the case manager at the LTAC and my dads dr and they have pushed his discharge back 10 days in order to give him time to make progress with PT. It sounds like we have all gotten on the same page, believing he should urgently go to an acute sci rehab. We are all trying to motivate my Dad to show consistency and motivation when it comes to his sessions, as Magee said they are specifically looking for progress. This week he’s been able to tolerate sitting at the edge of his bed again turning side to side. I argued that this in itself is great progress because he was not able to tolerate it the week prior. I think they want him to be sitting up by himself, which would seem like a pretty big ask to me!

It’s a relief that they are now working towards the goal of getting my dad to Magee instead of wasting time talking about SNFs at the moment. They said Magee reached out on Friday and asked for them to change him from a bipap to a cpap at night, which they were happy to do. Doesn’t that sound like they are readying to receive him?

Because I found cc the day after my dads injury I’ve been laser focused on the goal of getting him to a good rehab. Hlh and KLD are encouraging me and giving me the will to keep pushing. We’re definitely not there yet but it’s a relief to know that it’s still in the running.

[SCI-Nurse]

He must be kept off his back and lie side-to-side only so there is no pressure on the pressure injury. Let the staff know that you know the facility can be fined by Medicare if they allow a pressure injury to occur.
Any more word on the VA? He needs a team experienced and with expertise in SCI to help him with both the physical and psychosocial effects of an injury like this, and can maximize any return he is getting.

(KLD)

[Scidaughter2]

Following other people’s stories on CC has been so helpful, I’ll try to update as often as I can here so that people can follow as long as I’m able to keep this up. As many before me have said, SC injuries take you on many twists and turns.

The past 2.5 weeks have not been great for my Dad. I’ve been reliably calling drs and nurses every day getting updates and feeling like he was generally OK when in Covid isolation. His place opened up for visitors yesterday and some family friends were able to see him for the first time in a while. They said he was extremely depressed and unable to move anything. He complained about the facility, the nurse take forever to answer calls. There was trash piled up on a side table. There were nurses who had their masks down to their chins and yet visitors had to wear face masks and clothing covers. The dr was incredibly rude to them when they asked questions. My Dad must be extremely weak and my friends were worried about muscle atrophy. He seems to have given up, getting him to do PT requires a lot of encouragement according to the session notes. He’s been surviving on ensure, something I’ve brought up to dr repeatedly but her response has always been “I’ll get nutritionists to look at him” or “maybe we’ll put in a feeding tube.” Every time I bring up ongoing health concerns, they say “but he just got his trach out, isn’t that great!” Like, they did their job and they are done. He has a stage 2 pressure sore on his sacrum. They started him on Effexor for depression last week. The earliest I can go out is next weekend so we are trying to find family and friends that can fill in for us. My stepmom is still getting over covid herself.

[SCI-Nurse]

That is great news. If he has to go to a nursing home meanwhile, pick one based on the Medicare ratings, and one where you can visit him daily and be very vigilant about his care needs, especially the risks for pressure injuries, which could prevent him from entering a rehab program. (KLD)

[Scidaughter2]

Ok so the VA in Augusta accepted him!!! I’m so grateful for this site and for everyone weighing in it’s been so helpful. The only thing is they have a waiting list that is several weeks long. I can delay at the ltac but not sure for how long. He might have to go somewhere in the interim, VA coordinator said they will take him as soon as a bed becomes available. I assume that means even if at a nursing home nearby. I think they take a lot of veterans that complete shepherd centers program.

[Scidaughter2]

The LTAC wants to discharge my dad in the next week, give that he is medically stable. He has not been able to sit up without his heart rate dropping below 50, what they called Bradycardia. My understanding is that this has happened 2x, and both times they were attempting to sit him on the edge of the bed. He was tolerating this well up until a few days ago so I am not sure what has changed. I don't think he has low heart rate when lying down. Because of this new development, a number of acute rehabs have turned him down, saying he should be able to tolerate sitting for longer periods. Case manager is starting to prepare us for possibility of transfer to SNF in case no other acute will take him. The SNFs are mainly in Fl, since my dad is a FL resident. Obviously this is not something that my family wants, especially since he is still recovering from his injury and from Covid. I have asked them to delay transfer because he needs more time to recover. We have not heard back from any of the VA SCI places we applied to yet.

In your opinion, does this inability to tolerate sitting disqualify him from going to rehab? And if not an SNF, what are the options for a high level quad with complications who needs more time? Thank you.

[SCI-Nurse]

Did you ask about him being tested for c. diff?
Is he on hyperalimentation (IV feeding of proteins and vitamins)? (KLD)

[Scidaughter2]

I will have to ask about type of cough assist and whether they can use compression stuff for him! I’m glad to hear blacking out is common in spinal patients, it was definitely scary to hear about it from the dr.

[Scidaughter2]

Thanks KLD.
Today the nurse said that results from scan yesterday showed an ileus and possibly partial obstruction. I have to wait for confirmation from dr because sometimes the nurse is hard to understand. Nurse said that he will be seen this week by GI. I am unclear if this was the original ileus that he had right after SCI or if this is new. Any specific questions I should ask the dr? I assume they wouldn’t do surgery on him. When he had ileus back in ICU they told me it would likely resolve over time. Well, it’s been 6 weeks!

[SCI-Nurse]

It is good that it appears he is incomplete AIS C. He may even transition to AIS D if he is lucky...most improvement is in the first 3 months.

Has he been tested for c. difficile? Unfortunately this bowel infection is commonly transferred from patient to patient in hospitals, especially the ICU. If not, ask that a fresh loose stool specimen be sent for a c. diff. tox. screen. Treatment should be with the most recent meds if this is the case (many strains are now resistant to the older meds used).
I hope they put in a fecal containment device, not a rectal tube, which is outdated. It is good for keeping stool off his skin, which can cause skin breakdown.

Blacking out when standing is common for someone with a SCI even if not dehydrated from diarrhea. This occurs because of disruption of the autonomic nerves coming from the spinal cord that usually help to cause vasoconstriction of the blood vessels when we stand, and keep all the blood from running to our feet. Standing slowly is the remedy, and using a standing table (by PT) is a common remedy. Use of compression hose and a tight abdominal binder when standing or sitting upright is also recommended. This usually improves with time and more time out of bed, but some need to take a drug called Midodrine before they get out of bed.

Are they doing manual cough assist, or using a mechanical insufflation-exsufflation machine to to try to help him cough up secretions? The latter is often used for people with SCI who have weak or paralyzed abdominal and intercostal muscles (the muscles you use to cough). Not all hospitals have mechanical insufflation-exsufflation machines but they can be rented and the respiratory therapists should know how to use one.

A feeding tube may be a good idea, ideally a PEG tube and not one just down his nose. Ask for a dietitian to consult on his needs for nutrition. At this point of his injury he will be loosing weight and needs a high protein diet to prevent his body from burning muscle (protein) for energy.

(KLD)

[Scidaughter2]

My dad is having ongoing bowel issues. He had an ileus right after injury. Has watery stools and sometimes stomach appears distended. Today has a lot of diarrhea and stomach softened. They are doing X-rays to monitor for impaction and today did a ct scan. He’s not eating a ton, says the food doesn’t taste right. Drinks a lot of ensure. Dr thinks might have to put in a feeding tube. Asked Dr to monitor intake more and check in with GI consult. Still covid positive so unable to see him. Before, when family was around, they would encourage him to eat. They also put in rectal tube because his skin was getting irritated where he would have accidents. Said he didn’t like the tube because it was uncomfortable. I guess he can feel it! He has been doing PT a few times a week. They stood him up 2 days ago using a sheet for support and PT said knees were contracting. Said he was able to bear a little weight on legs. They noticed some wrist movement and movement on right side that was more than trace movement, it was against gravity. This is all new. Classified as Asia C. Today when they sat him up he totally crashed, blacked out and they had to reposition with legs up. After a few minutes he was back to normal. Don’t know what caused this as he has been able to sit up fine before. Dr thinks may be body’s response to losing fluids through diarrhea. He also has fluid in his lungs, they can’t say for sure what the cause is. Respiratory said he doesn’t like cough assist and dr thinks he can cough well in his own. Has been between 4-10l of oxygen lately. So, it’s a little all over the place right now. Some hopeful things but also some frustrating setbacks.

[Scidaughter2]

Thank you so much KLD! Your support and this site has been a lifeline.

[Scidaughter2]

It's the 6 week anniversary of his injury today, my Dad tested positive for covid 5 days ago. I got to talk to him today after a nurse kindly called us using the room phone and he sounded very weak but oriented and alert. What a relief. He is using a nose cannula for oxygen. I'm glad they were able to infuse him right away with the appropriate drugs and he's also vaxxed and boosted. My 80 year old stepmother also caught it and she's been fine on Paxlovid. The hardest part is not being able to visit but I've been checking in a few times a day with the drs and nurses. I asked dr if possible to start PT with him again to get him out of bed and moving/stretching his limbs and she said she think it would be okay.

[SCI-Nurse]

I am so sorry and am sending positive thoughts and energy to your dad on this New Year's Eve. (KLD)