8 replies to this topic

[BigSis_K]

It was starting to feel like NOTHING good was going to happen for this boy, but they decided today that he was strong/well enough to move from ICU to the step down unit (next will be rehab - hopefully - ....medicaid... )

anyway....he's still on a vent with a bit of junk in one lung and a serious med cocktail (I'd be dead) and of course a neck brace, so he can't exactly look around too much but...is there anything that we could bring him in the hossie that would:

-help occupy his time when he's awake (fighting off some psychosis due to month long ICU stay)
-help work his hands so they don't get any stiffer? (C7 was last they told me, inferred complete) He had some sponges, they disappeared & no one replaced them... He has NOTHING to do but watch tv (never been a big TV watcher anyway), flag down every nurse that walks by, and listen to the vent....

I brought him a bag of the big lego-style mega blocks & he was able to snap two together (with a little help lining them up) & I just told him to work on trying to pull them apart (I know he really can't right now, but is it bad to give him something like that just to try? I was hoping to tap into that innate stubbornness he has & offer him a challenge to work on - just so he can work on ... something... apparently he only gets seen by PT for 15 mins/day in ICU.

I'm patient with his recovery, but he really can't sit & do nothing at all. Would it be bad to give him things to do to work his hands a bit (and focus his mind on something)?

[goose]

That's great that you're so willing to help your brother. It would be great to bring in things to help work his hands. I'm a higher quad so I'm gonna guess at some things.

-soft balls for squeezing to help grip
-therapy putty
-cones like thread comes on...pick up and stack then unstack or solo cups turned upside down
-therabands used as resistance
-ipad

Talk with an occupational therapist for more and better suggestions. They work with the upper body and could make some good suggestions.

[BigSis_K]

goose, on 11 September 2011 - 07:08 AM, said:

That's great that you're so willing to help your brother. It would be great to bring in things to help work his hands. I'm a higher quad so I'm gonna guess at some things.

-soft balls for squeezing to help grip
-therapy putty
-cones like thread comes on...pick up and stack then unstack or solo cups turned upside down
-therabands used as resistance
-ipad

Talk with an occupational therapist for more and better suggestions. They work with the upper body and could make some good suggestions.

thanks, if I can ever FIND the PT I'll ask...I was just pulling tasks that I have done in therapy with kids with fine motor problems.

Is it ok to "challenge" him? (he can get a bit pissy, but he was pissy before...so that's not necessarily sci-related) I've seen him go from much more active/motivated to very "flat" and I want him to focus on what he can/will have and not what he doesn't. kwim?

I told him that once he starts REAL rehab he's gonna work his ass straight off (he nodded in agreement - he's bored) so....might as well start doing something now.

The respiratory therapist had the audacity today, however, to mock him over the damn blocks "Oh, are you reverting to your childhood?" I told her that I thought a productive distraction would be good for him, especially since his sponges have gone ... away. (I guess its those kind of remarks from the staff that make me think I"m doing something "bad" rather than trying to help him....) ah, screw 'em he's my brother & I know him better than they do....

[Vanessamaee]

Thats awesome that your there for your brother! My family was reversed. I was in the injured one and my brother is the older one, except he got slightly freaked out by everything (hes the emotional one) but he did help when around, like when I was in the huge hospital chair, he'd push. Dont worry about what your doing! I see my OT's in my outpatient rehab doing the same thing with quads. Im a T3/T4 complete para but have some nerve damage in my right arm, so every morning my main goal was to open the bag of cereal. (They gave me the little cereal boxes with the really small sealed plastic bag, kind of like the travel sized cereal if you know what i'm talking about). In the begining it was a total pain in my as*, but it slowly got better. I also would type which helped work my fingers and write. My OT gave my tennis balls to squeeze to try and help strengthen my grip... anything to work out his hands is awesome!

[wheeliebear75]

MP3 player
Audio books

(I'd be careful about leaving them unless you REALLY trust the staff as they're super expensive)
Laptop and/or portable DVD player

[nomis]

Is he getting daily range of movement workouts? That's important, maybe twice daily minimum, moving all limbs and digits through their full range of movement to keep them flexible and prevent contractions.

[BigSis_K]

wheeliebear75, on 12 September 2011 - 10:20 AM, said:

MP3 player
Audio books

(I'd be careful about leaving them unless you REALLY trust the staff as they're super expensive)
Laptop and/or portable DVD player

Thanks for those suggestions too! I have asked him if there's any music he wants (my husband's a musician so we have EVERY SONG IN THE WORLD on the computer). I have a small mp3 that had one big center button (it's like a shuffle) which mimics the shape/pressure sensitivity of his pain med "button".

I'd be afraid he'd get pissed & throw the laptop just yet, though. Mebbe a used Ipad in a otterbox (if they make 'em for Ipads..)

I was also going to take a Rubic's cube up. Not to solve, just to grip & twist. I think he'll be able to work that a little easier initially than the legos & help build his confidence a bit before moving to more aggravating stuff.

nomis, on 12 September 2011 - 10:40 AM, said:

Is he getting daily range of movement workouts? That's important, maybe twice daily minimum, moving all limbs and digits through their full range of movement to keep them flexible and prevent contractions.

You know, I really don't know. I've never seen anyone but my mom do his ROM, but she does it every.single.time she's there (just abut every day). And that's what's pissing me off the most, I just don't see the focus on recovery or maintenance of functioning. I get that they had to deal with the "trauma" first, but aside form his neck, there wasn't a scratch or bruise on the boy. But he got pneumonia after a week & that's been the biggest b*tch to deal with.

Oh, and just to vent....he was started on soft foods (still has a trach) and the nurse wouldn't open his food for him!!!!! Or strap on his .... holster(?) thingie to help him hold the damn spoon! I get he needs to work some for himself, but there is no way he could pull the foil seal off of an applesauce container

Edited by BigSis_K, 14 September 2011 - 06:25 AM.

[Muskie]

Dear BigSis_K,

Boy did you bring back alot of bad memories. If you are waiting for for the hospital to do PT/OT with him on a regular basis forget it. We had the same experience they came in a total of 3 times in 19 days. the rest of the time it was my wife and myself. I would sign up today for the functionality your brother has, to me it sounds like he has great potential to get things back. As far as being pissy, I see it everyday with my son, not a whole bunch you can do about it other than be supportive. Just get the lung infection cleared up and him respiratorally stable, I was told no rehab will take them any other way. One last thing I did learn in the hospital was the squeaky wheel gets the grease, you not getting any PT after speaking to hte resident or his nurses or social worker, then march on down to the hospital administrator office and raise some hell there. Usually, that will get it done. Hope this helps stay strong and focused you must be your brothers advocate otherwise he is just another number to them.

Good Luck to your brother, you and your family

Muskie

[Denna]

Sounds like you are making a good start on his therapy. It sucks that PT and OT isnt helping him at the hospital. But I wouldnt hold my breath on them anyday. They only showed up once when I was in the hospital. The rehab nurses wont be better about his care and doing small things for him either. I was lucky to get a cathed every 4 hours let alone get a bath everyday. Sense my husband stayed with me the whole time they thought him or the Ots should do it. They then wanted me to wake myself up in the middle of the night to call them in to cath me. But my Pts and Ots was amazing.
I cant help much with Ot for hands sense I'm a para. but I can tell you that even though the Ipads sound like a good idea you also have to take into consideration that he is on alot of pain meds and it messes with his concentration. I love to read and text but the whole time I was in the hospital and rehab I couldnt read a sentence with all the meds I was on. But he might be different. Good luck with therapy! Sorry this has happened to you and him.