Ltac really that bad?

[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I hope they put in a fecal containment device, not a rectal tube, which is outdated.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]

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]

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

[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.

[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.

[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]

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]

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]

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.

[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.

[SCI-Nurse]

I think that is a good idea. (KLD)

[Tetracyclone]

When my dad qas in rehab he got C-Diff due to lax staff practices. Medicare wanted to discharge him for no progress. We appealed, stating clearly he had suffered diarrhea for 4 weeks. They buckled and continued his care.

[Scidaughter2]

Thank you Tetracyclone. I believe he has been tested but results not in yet. I will confirm on Monday.

[SCI-Nurse]

A c. diff. tox screen results should be available within 24 hours.

(KLD)

[Scidaughter2]

I was finally able to get in to see my Dad yesterday after weeks of lockdown at the Ltac! He was so happy to see his children. I was not able to speak to his dr but will track her down today. Still haven’t received an answer about c-diff. Every time we call the nurses in, there’s an immediate and basic need to be addressed. My dad was right-they take forever to answer calls, even though we can see them all sitting at the station outside his room.

The PT has been wonderful though. She waited until we were there to do the session and my Dad has been very motivated to work ever since we gave him the talk about Magee following his progress. I was able to see him kick his left leg, could see the right one flickering as he tried. He was able to sit at the edge of bed with minimal assist! He was using his core to move forwards and backwards while sitting. He could rotate his left hand upwards and wriggle his fingers. His right side is significantly weaker. It was such a relief seeing him work so hard. He’s a very proud Marine.

To top off a very busy day, the case manager told us that he would be transferring to Magee this week!

It still doesn’t feel real, but we are elated obviously. I’ll be able to rest for the first time knowing he is in good hands.

I so appreciate finding this site and this community, I think it has saved my Dads life.

They said to bring sneakers, sweatpants and clothing that you can put on or zip up easily. Any suggestions for things to bring to rehab?

[Jim]

Great to hear of the progress!

[Scidaughter2]

The day Dad was supposed to be transferred to rehab I got a call in the middle of the night from the Ltac saying he needed a ct scan and was en route to the ER. He had a distended belly and wanted to check for blockages. The scan came back clear in his stomach but it showed that his bladder was very irritated and began antibiotics right away for a UTI. He is waiting to be admitted to the hospital now for monitoring for 2-3 days. When I saw him early this morning he was saying he was freezing cold, I put a bunch of blankets on him. His respiratory rate doubled and he seemed to be wheezing and having labored breathing. The nurses said his oxygen was fine. They changed his Foley catheter, which was no longer working and he immediately voided a lot. For the past few hours he was been sleeping hard, full on snoring.

This is a disheartening setback for us, we were very excited about next steps. I hope he can transfer directly to Magee after this.

[Scidaughter2]

It's been quite an eventful week! My Dad spent 5 days in the hospital where he was treated for a UTI. He was getting good care at the hospital and he needed more time to recover so I appealed their decision to discharge him after 2 days, which bought him extra time. Unfortunately during this time, Magee let his bed go. He was released back to the LTAC yesterday. The whole time he was in the hospital, my brother and I have been calling the VA and arranging a medflight for him to be brought down to the Augusta VA. They had a bed open up and we thought, "better get him down ASAP or else he'll be sent back into another long holding pattern at the LTAC." So, plan is to fly him down tomorrow, where my brother will meet him at the VA hospital. We are excited that it's finally happening, although I won't be popping the champagne until he's actually there.

[SCI-Nurse]

Happy for you and your dad. I hope he gets the care he needs at Augusta and can start a formal acute rehab program soon. (KLD)

[Scidaughter2]

Dad has had a busy week, getting settled into the VA and being assessed daily by the team there. We meet with everyone tomorrow to discuss treatment plan and we will also get a discharge date (gulp). So far, the VA has been everything we wanted for Dad in the first place, people knowledgable about SCI who recognize his unique needs. My brother has been able to visit a lot and 2 days ago they started training him on the powerchair, after 3 months in bed he was able to roll around. He could control it using his right hand. Yesterday he was very tired and refused a bath and shave (very unlike him) and he also tested positive for c-diff (a mild case according to the PA) so they put him on different antibiotics for 10 days.
We are hopeful he can go far in his recovery at the VA, although his energy levels are still fairly low and sometimes he gets confused as to where he is (what city) but can answer questions about his partner, kids etc. For example, my brother asked him what city he was in and he answered "Sarasota" even though we are in Augusta. I think all the moving around has taken a toll on his sense of place and time. Plus, he has been battling infections (UTI 10 days ago and now c-diff).
Overall, it continues to be a roller coaster, but if looking at the big picture I'd say we have come a long way since those days in the ICU. We are getting a clearer picture of his function, since he is ASIA C I can see him making more functional gains, but muscle weakness and low energy seem to be the biggest factors.