Monday, December 7, 2015

Coming home with petrie casts

 
So here we are, in the car on the way home, and then on the couch, and then cruising around the house in his wheelchair.
 
Theres too much write about what has happened in the last few days. But because I'm hoping that this blog will be helpful to other people in situations like ours- I'll try to write some of the important things.
 
The first night that we were in the hospital Nochy cried and yelled most of the night that the cast was hurting his heel. Even the highest level pain medication wasn't helping him to sleep or to be more comfortable.
 
So Dr Roberts came in with a cast saw, and sawed off the left foot of the cast, which brought immediate relief, thank G-d. He said he would rather leave the right foot in the cast, especially since the positioning of the right leg is the most important part because that's the Perthes affected side.
 
Once that was settled, the rest of the day on Friday was insane. We had OT and PT people in and out of our room the whole day. Since most people in the hospital had never seen a cast like this no one was prepared. They scrambled around pulling different things from their offices in to our room trying to figure out which would work best. Nurses came in to watch the session so that they could also learn how to help us help Nochy.
 
Since the average wheelchair legs go straight forward and Nochy needs support in an 'A' position, they put down a board and then put a pillow on top of it. He doesn't fit in a walker, so they brought these half walker things, which didn't help either. Then they brought crutches for him to balance on. He amazed all of us with his upper arm and core strength- but he literally can't move or even drag his lower half, so we have to do that for him.
 
All day we practiced standing him up, getting him in the wheelchair, taking him to the bathroom, and lastly and the most difficult- getting him in to the car.
 
The car situation is a disaster truly, but I'm hoping it will get better. His legs barely fit through the sliding doors and he can't hoist himself from the chair to the high up bench seat so for now it takes two people- one in the car and one outside of the car to hoist his casted legs. Luckily he fits in one seat and then needs something in the footwell of the car to support his legs out in front of him. As winter comes with snow and ice I just keep trying to think day by day instead of jumping to the worth case scenarios.
 
I also learned how to help him flip over onto his stomach- he kinda looks like a starfish as he's being rolled.
 
Another note- the typical urinals they use for boys to help them go to the bathroom post surgery does not work- they don't fit with the bars between the legs. We found this out the hard way when nochy said he had to go after surgery and like 3 bags of IV and then all of the sudden we couldn't get anything there and he was screaming, Poor kid- but a simple water cup did the trick eventually.
 
I have a lot more to say but I'll save them for future posts. The snap on basketball pants were helpful, as was taking boxer shorts to the tailor to have Velcro put in.
 
We ended up spending a small fortune on pillows of all shapes and sizes to help him be comfortable in the pull out couch in our den (aka nochys new bedroom). We also needed to replace the blinds in the den because this is his new room and sometimes bathroom (more on the portable commode later). And we bought a longer board then they gave us from the hospital to put under his legs on the wheelchair which seems to support him well.
 
But I want to end on a positive note. Nochy is amazing. He's smiling, he's in good spirits, and he is so resilient. I'm majorly impressed with him and so thankful to G-d for his strength. Another amazing piece is our community. The outpouring of texts, calls, gifts, food, and more has been breathe catching. I feel so grateful and overwhelmed with how amazing everyone is and it makes me feel bad that I haven't been there for others in the way people are for me at this stage of life.
 
Lastly, Thank G-d, really and truly. Hashem is amazing and has been so clearly with us through every step of this process.
 
Who knows what the future will bring, how long he'll be in the brace, whether he'll need an osteotomy, or casts again- or how long until he's up and running again-but until then- we know Hashem is not only with us, but carrying us through.
 


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