H's physical therapy

spockforprez

Just wanted to share an update with you guys! H has been in the inpatient rehab facility for about two weeks and we are really happy with it. The care is REALLY great. We have had no issues whatsoever, not even meh, "well at least it's better than the nursing home" care - just all around great, hospital-level care. His doctor is nice and very supportive and he gets 3-4 hours of therapy every day along with regular showers (real ones!) and decent food.

He's been standing with minor assistance for balance since two days after he moved in; he's gotten pretty strong with it and he is doing assisted "stand and pivot" to get in and out of bed now instead of using a sliding board. 

His initial release date is a week from tomorrow; I am pretty sure it will be extended as his need for assistance with mobility is still really high, so we'll see how it all goes with insurance coverage.

We hired a prosthetist last week and tomorrow he will get his first artificial leg! It will have a locked knee joint, no walking yet. Just something to learn to put weight on and begin standing on two legs. H's first two goals (over a period of six weeks) are to stand unassisted for five minutes and to walk 10 feet. Pretty tiny goals, but I feel confident he will meet and exceed them!

The prosthesis is fairly complex; H only has about two inches of femur left which is an exceptionally short stump. He will be treated similar to a hip disarticulation where the entire leg is removed up through the hip joint - so he will have a belt component that goes around his waist for some added support. That's all I know for now; eagerly looking forward to seeing it on tomorrow and seeing how it goes!

spockforprez

Here's a photo I took today of H standing during therapy. (I need to have a talk with the person who handed him a white shirt and light gray shorts to wear this morning!) Sorry it is so large!

ei34

I love his brave smile.  You're both so strong.  Wishing him a smooth recovery.  It sounds like he's in a great facility.

madamerwin

Thanks for the update! I am sure you mentioned this earlier and I missed it, but I thought he wouldn't be able to use a prosthesis - I am so glad he will be able to walk again one day!

kimmiinthemitten

Spock this is so wonderful. It lightens such a huge weight off of your shoulders when you can count on the medical team to provide wonderful treatment. I look forward to reading more good news!

ernursej

I'm so glad that he is in a facility that is providing great care. Feeling well taken care of does wonder for a person's mood and I feel that mood influences abilities and effort. I hope the good news continues!

charlotte989875

So glad you guys have gotten somewhere he is happy and treated well. Yay for tiny goals and moving forward (literally and figuratively)!

OurWildKingdom

So happy to read this! H looks great!

spockforprez

Thanks everyone! He's so happy

madamerwin said:

Thanks for the update! I am sure you mentioned this earlier and I missed it, but I thought he wouldn't be able to use a prosthesis - I am so glad he will be able to walk again one day!

No, you're right. The doctors in the hospital told us repeatedly it was unlikely he would ever be able to have a prosthesis due to his stump being so short. We decided to consult a prosthetist anyway because of the research I had done about people with hip disarticulations - there was one girl in particular who had a hemipelvectomy meaning she lost her whole leg and half her pelvis. I kept thinking, "If she can have one, then H can!"

The prosthetist did say it will be very challenging and H will have to put in a lot of work, but there are plenty of options and more being developed every day. Microprocessor joints, etc. Sadly, the increase in amputees due to the war is driving a lot of the developments in this kind of technology.

ILoveBeachMusic

Wonderful news! Hope everything continues to go in such a positive direction.

ShesSoCold

I'm so glad to hear he's doing so well and that both your attitudes are still so great. It's really incredible.

How's his arm doing?

Jen4948

Thanks for the update! I'm glad he's doing well.  You and he have both been really terrific about this. I'm not sure I would be.

spockforprez

ShesSoCold said:

I'm so glad to hear he's doing so well and that both your attitudes are still so great. It's really incredible.

How's his arm doing?

We will see a neuro doc soon to get his first nerve test and then we'll know how to proceed. So far he hasn't had any calculable change in sensation. Sometimes he thinks he can feel things a bit better, but it's hard to be objective. 

Jen4948 said:

Thanks for the update! I'm glad he's doing well.  You and he have both been really terrific about this. I'm not sure I would be.

Thank you! Actually, I'm a hot mess. The logistical and emotional challenges are pretty high right now. I just decided to stop talking about it because feedback from others seems to make it worse, not better. (Edit - in general, not on TK specifically!) I've done some journaling, though, and now that I'm working on the yard my moods seem better!

spockforprez

The moment he's been waiting for for 103 days!

SP29

AWESOME!!

Glad to hear your H is doing so well- he's making great progress! I hope H is able to extend his time in rehab- he has many achievable goals he can reach.

spockforprez

I don't know how to share video from my phone, but H is walking!!! Not very fast, but strong and pretty steady, and for WAY more than the first goal of 10 feet! Hoping to get his prosthetic upgraded soon, as walking with no hip joint and a locked knee joint is a little clunky. He is working up to wearing the prosthesis for longer periods - there is a strong concern (for all people who wear prosthetics) about skin breakdown so it is a gradual increase and constant vigilance against any signs of irritation. 

We absolutely loved his doctors and medical care in the hospital and have no issues with them, but I just have this urge to go, "NEENER NEENER! You said he wouldn't be able to have a prosthesis! Now look at him up and walking! Put that in your stethoscope and smoke it!" Heehee. 

He's coming home (permanently, yay!) this Thursday the 16th. 

Logistical issues and family drama have prevented us from getting our bathrooms done yet, but we are hoping they will be completed in the next four weeks. In the meantime, we have a shower chair we can use in the tub, and will do our best with what we have!

Working on long term logistics now... H really wants to go back to work soon. I think we still have a lot of doctor's appointments (plus outpatient therapy) and now that his pelvis issues are resolved we will turn our focus to the nerve testing and possible surgeries on his left arm. He has short term disability for six months which is up in August and, if he's approved for it, I think he should take advantage of it so we can run around and do all this stuff without worrying about taking unpaid time off or coordinating everything. He'll have about two full months at home if we get approved for the full short term disability. (He also has long term disability for 2 years but I don't know what rate of pay that is and I am hoping he will be strong enough to go back before then, as I know he really wants to. We haven't discussed specific accommodations with his job yet, either, and there may be some unforeseen issues we haven't thought of yet.)

Plus, I think he is riding high on the very quick progress he made with his new leg (as he damned well should!) and seems to be losing sight of some of the challenges he will face. He was saying offhand he doesn't think we really need to worry about the bathrooms and I gently reminded him that if he is sick, or falls (VERY likely for new amps) and injures himself, or is just tired or under the weather, he may not have the strength to do everything he could do on his best days. I think we should plan for his minimum level of function. Like, if he feels great and wants to stand up and shower himself, then great! And there's nothing wrong with him using a walk in shower to do that. But if he's not well or is injured and needs my assistance to shower or needs to shower seated, that will be very difficult to do long-term in a normal tub. Does that make sense?

Same thing with driving... One leg, one arm, it will be tough! He will almost certainly need adaptive equipment. I was talking about driving him to work, at first at least!, and he was almost offended by it - I asked him, if you are steering, how will you operate the high beams or the turn signals? He said, "I'll steer with my knee!" Honey... that foot will be on the accelerator and it's the only one you have. "Oh... yeah. I forgot. I can use cruise control!" LOL, poor guy! And I absolutely HATE being the voice of reason! I am trying my hardest to tread that fine line and keep him feeling positive and believing he can do everything he wants, while making plans that will help him be both independent and safe. 

Wow, that update got long! Sorry! I am thrilled he will be coming home this week, and hope it will resolve a lot of my emotional issues that have cropped up since he went into rehab. And, damn! I can't WAIT to snuggle!!!! OMG!!!!!

ernursej

Sounds like amazing progress! Thanks for sharing! I really hope that having him permanently at home will be a sigh of relief and the next stage in his recovery. It sounds like you are being a fantastic support for him. Don't forget to support yourself too!

WinstonsGirl

So exciting for both of you!!  It's amazing to me how much he is walking already.  

ILoveBeachMusic

Such wonderful news that he is doing so well. Here's to continued accelerated recovery!

SP29

Awesome!!

Can he go back to the hospital for a visit? Just to say hi to the doctors and nurses. And he can show them that YES, he can use a prosthesis! Not to shove it in their face, but as a reminder to have hope and be encouraging to others that there are options. At the ICU I work at we will often have some of our spinal cord and trauma patients come back to visit- it's really nice to see them doing so well .

I think you are being very smart about the home improvements. Hope for the best and plan for the worst. The biggest thing, is that you don't want H to have a day where he needs something, and it not be there. Like you said, better have something and H never use it.

As for driving, is your insurance company aware of H's new physical status? If not, they definitely need to know. One of three things will happen, they will say A) Ok, thanks, carry on. Ok, he can drive with a doctors note stating he is capable or C) They'll want him to do another driving test. The big thing here, is that if they don't know and H ends up in a car accident while driving, even if it isn't his fault, the fault can be very easily placed on him because he has a medical condition/disability.

Do you have an occupational therapy contact already for the home improvements and car adaptations? If not, the rehab clinic should be able to connect you to all these services.

Glad to hear he is doing so well and has maintained such a positive outlook. I'm sure he'll be zipping around with a new prosthesis.

spockforprez

SP29 said:

Awesome!!

Can he go back to the hospital for a visit? Just to say hi to the doctors and nurses. And he can show them that YES, he can use a prosthesis! Not to shove it in their face, but as a reminder to have hope and be encouraging to others that there are options. At the ICU I work at we will often have some of our spinal cord and trauma patients come back to visit- it's really nice to see them doing so well .

I think you are being very smart about the home improvements. Hope for the best and plan for the worst. The biggest thing, is that you don't want H to have a day where he needs something, and it not be there. Like you said, better have something and H never use it.

As for driving, is your insurance company aware of H's new physical status? If not, they definitely need to know. One of three things will happen, they will say A) Ok, thanks, carry on. Ok, he can drive with a doctors note stating he is capable or C) They'll want him to do another driving test. The big thing here, is that if they don't know and H ends up in a car accident while driving, even if it isn't his fault, the fault can be very easily placed on him because he has a medical condition/disability.

Do you have an occupational therapy contact already for the home improvements and car adaptations? If not, the rehab clinic should be able to connect you to all these services.

Glad to hear he is doing so well and has maintained such a positive outlook. I'm sure he'll be zipping around with a new prosthesis.

Thanks for the awesome response! Had to color code so I made sure to respond to everything!

Purple - we will be going back for a surgical follow up soon so his ortho surgeon will see him then! I would love to go see the ICU nurses and residents, but I'm not sure how. It's a locked ward so I don't think we can just go back to chat, haha. How would you recommend I go about that? One of the nurses is my facebook friend, should I ask her about coming to visit? 

Blue - we just got new car insurance because his parents gave us their old car. We switched companies so it was a completely brand new policy, no history there at all. They asked a lot of questions, but none about any physical driving limitations. Should I call and volunteer that info? Maybe I can have H's lawyer check the policy language for that. I will be the one driving H for awhile so I really don't want the policy to be canceled.

Green - when H was at home before going into inpatient therapy we had OT at the house several times per week and got some feedback from them. We have a pretty good plan in place; my uncle, who is assisting with the renovations, is an ADA certified builder (owns a custom home business) so hopefully his expertise will help us get the best for what H needs. Re: driving, I think H said they teach adaptive driving at the outpatient facility, so he can get some good info there. I hope everything works out the way H wants! I just want to be realistic and safe!

SP29

@spockforprez

Our ICU is locked as well, with a phone outside the door. I think the patients usually do get someone to bring them in. Such as calling in and asking to speak to the social worker, or their favourite nurse, and that person brings them in. If you have a nurse on your FB already, good idea to ask her if she's in working the day you have your appointment. Or if they have a policy about it.

As for driving, the policy would be fine with you driving. It's for when DH starts driving (since he mentioned wanting to drive one handed with cruise control ). I'd recommend he wait until the adaptations are in place and he's had some time to practice. Even then, it's not that they'd cancel the policy on you, they may just want a doctors note or proof you've had the adaptations made. Or they may not care at all. Just for your own piece of mind, *should* anything happen, you know they've got you covered.

That is awesome your uncles is able to do those modifications for you.

drunkenwitch

I am so happy to see this! You two are amazing!

OurWildKingdom

Wow! That made my day!

wink0erin

I'm late, but I'm popping in to say it's awesome that he has a prosthesis now! I was just at an Amputee Coalition conference this past weekend and it was amazing. People with all levels of amputations, missing multiple limbs, etc. I watched a woman with no prosthesis hula hooping like a pro (I think she was a hip disartic).  Everyone helped everyone else, there were basic classes and advanced classes for different things, there was a dance party on the final night which was fun and hilarious. Really I'd recommend any amputee attend. I've gone two years now and it changes me each time.

This advice may clash, but hear me out. Can I suggest not being the voice of reason? Let him be ambitious. I'm sure he realizes that things will be a challenge. Yes, it's good to think things through, but planning for the worst day is depressing. I mean, for example, I live in a house with stairs. My bathrooms are not adapted. I live alone. Even on my worst days I found a way to adapt and he will too. It takes creative thinking but adapting happens! Talking to other amputees really helps too.

You all are doing great!

spockforprez

wink0erin said:

I'm late, but I'm popping in to say it's awesome that he has a prosthesis now! I was just at an Amputee Coalition conference this past weekend and it was amazing. People with all levels of amputations, missing multiple limbs, etc. I watched a woman with no prosthesis hula hooping like a pro (I think she was a hip disartic).  Everyone helped everyone else, there were basic classes and advanced classes for different things, there was a dance party on the final night which was fun and hilarious. Really I'd recommend any amputee attend. I've gone two years now and it changes me each time.

This advice may clash, but hear me out. Can I suggest not being the voice of reason? Let him be ambitious. I'm sure he realizes that things will be a challenge. Yes, it's good to think things through, but planning for the worst day is depressing. I mean, for example, I live in a house with stairs. My bathrooms are not adapted. I live alone. Even on my worst days I found a way to adapt and he will too. It takes creative thinking but adapting happens! Talking to other amputees really helps too.

You all are doing great!

We really wanted to go to the ACA conference! We just weren't ready yet, logistically, with rehab and everything. I hope it's fairly nearby next year so we can go!

Regarding the bolded, if he didn't have a paralyzed left arm I wouldn't worry as much about his safety. It really affects way more than you'd think, both in the sense that he doesn't have that arm to use for balance/pulling his weight, and that it hangs down sort of limp and in the way (even in a sling). Thankfully, he is a very rational and logic-oriented person, so discussing these things with him doesn't bring him down too far - just enough to make a reasoned decision together. I am very open to his feedback as well! And I do trust him to know his own limits. It just helps to see all sides of something before making a decision. Part of it too is that I am not an athletic or strong person, so having adaptive bathrooms helps me help him (if needed). And while he has gotten SO strong, oh my god, even just in the last week, bathrooms can still be dangerous even for those who have not lost a limb. I just get so scared thinking of him all slippery and falling! I will do my best not to let my fears get in the way of his success... thanks for that remind!  

spockforprez

H is home and doing great. Things run fairly smoothly now that he isn't quite as dependent on me for little things. The biggest win is no more bedpans, so no more bathroom duty for me, although I have to be nearby when he transfers to and from the toilet so sometimes it's still a bit indelicate. But after spending a month cleaning up- well, what I had to clean up, lol, that is not really a problem. 

I'm exhausted. We have been running around to multiple events and appointments this week and the constant loading/unloading of the car is somewhat of a trial. Parking is also a challenge, one of those invisible things that you don't notice until it happens to you. I have been tempted to key some cars lately but thankfully I have resisted Tomorrow we have NOTHING ON THE AGENDA and I'd like to sleep until at least 9 if I can because lack of sleep has me feeling under the weather which is a no-no right now.

There is some fairly major drama with his mother that has taken a substantial toll on me. Without sharing details, it involved her screaming at me in the parking lot of a restaurant and she hasn't spoken to either of us in days. On the plus side, I am 100% absolutely in the right-- so you know, that helps some, haha, but as a very sensitive person going through an extremely difficult situation, it hurts pretty deeply to have this additional stressor. Thankfully H is incredibly supportive and has "stuck up" for me so to speak. And, she is a nonissue in our lives logistically speaking; she hasn't been involved with his recovery, pretty much at all, so it's not like a bad situation where we really need her help and she's withholding it or anything. I do wish we lived closer to my parents instead of his, but we are making it just fine for now. Since everything went down, H and I have spent a lot of time talking more in depth about his childhood relationship with his mom (because the behavior she exhibited toward me is apparently normal for her), and we've grown even closer as a result. We plan to discuss what boundaries we want to set with her and how we want to enforce them. As a certified doormat, any advice is welcome... lol! 

Okay, so generally speaking recovery-wise, we are on track for everything. Going to see a doc about his nerve injury soon! The biggest concern is getting back to work in a timely fashion - we don't think he will qualify for long term disability so we have about 8 weeks of short-term disability left, to work on some accommodations with his employer. His job is 95% computer based so that's not an issue really, but access to the campus and building will probably be an issue. We've brainstormed a few solutions and I think his job will work with us; they have been very involved and supportive! His therapists are also aware of and support his desire to go back to work so hopefully that gives us a push. Also, I too will be employed again soon, hopefully! My friend referred me for a part time CSR job at the insurance office where she works. She said her boss has hired every person she has ever referred, so that is hopefully a good sign for me. Plus, I have a lot of experience in phone-based customer service including as a supervisor. The schedule should be good for us both now and after he goes back to work, and the pay is slightly more than the job offer I received back in February before all this shit went down.

Hmm... what else? He outgrew his first prosthesis so we go back next week to get the next level which should have some pretty cool components! His amputation is very short, only about 2 inches of femur remaining, so he is being treated similar to a hip disarticulation, which is removal of the leg through the hip joint. So his prosthesis will have a hip joint, knee joint, and ankle joint. The whole kit & kaboodle, as it were! He's already doing so well with the first version that I know he will kick ass with the new one.

Whew, another long update. Overall, we are making it! 

MairePoppy

I love your positive updates.
If you were my DIL, taking such good care of my son, I would worship the ground you walk on. Just saying.

OurWildKingdom

MairePoppy said:

I love your positive updates.
If you were my DIL, taking such good care of my son, I would worship the ground you walk on. Just saying.

Ditto!

I'm always so happy to read your updates. 

drunkenwitch

I am wishing you the most epic, spooniest, cuddliest snuggle of snuggles.

Just for a laugh, when I curl up to BF in the morning or evening I don't ask for snuggles, I just yell "incoming butt".