Chanukah with a Petrie cast

Chanukah is now winding down, and it seems to me that now chanukah and casts will be intertwined for awhile

 

 

 It was probably good and bad that Chanukah started just as we were coming home from the hospital. More good than bad.

 

Good because it was an incredible distraction. The whole week was wild. There was potato latkes, and sufganiyot and Chanukah cookies everywhere. And the presents, oh the presents. It was amazing.

 

It was good because all of the kids got presents, and not just Nochy. Whereas any other time during the year the sibling jealousy factor would have gone through the roof.

It was also good because he didn't miss much in school last week. They partied last week and didn't cover much material.

 

It was also hard though. Thursday and Friday all of my kids were home including the baby and that was a lot for me all day everyday as we were adjusting to this new kind of life.

I had to make plans for everyone and make snacks and lunches for everyone at all different times. The house was a royal mess and no amount of cleaning could keep up with it because everyone was just home at all times.

 

Having Nochy in a cast is like having another baby, and this baby is large and I'm unable to pick him up. I have to dress him, bring him food, and bring to the bathroom. Anytime he needs to switch positions he calls out for me to come. I'm not complaining, just stating the reason why I end every day exhausted.

 

But then theres the scenes above. Watching my son light the menorah from a wheelchair in the beginning and then from there to crutches.

 

And I realize what really matters. How lucky we are to be here, to have each other, and to witness all of the miracles of daily living.

 

This was hammered home even more so when I went to the Chair Lifeline Chanukah Party on Sunday. I walked in to an auditorium filled with people that have challenges in their lives.

 

I knew a lot of people in that room, but I didn't know that a lot of people struggle with an illness of some sort. It humbled me to the core to think that so many people that I interact with on a daily basis have deep hardships that I know nothing about.

 

Miracles are not about the big things. Money magically appearing or a person who was told they would never walk again suddenly being able to dance. Those are miracles- but few and far between unfortunately. Miracles are what people are able to accomplish on a daily basis through their pain. Miracles are being able to take your sick kid home from the hospital right on time. Miracles are being able to smile while your loved one sits through chemo. Miracles are being able to come together as a family or a community even though the burden there is bear is so heavy.

 

I am humbled by everything that people have done for us in the past few weeks. Our friends, our family, our community, everyone is just amazing.

 

I am so blessed to be able to light the Chanukah lights with my family, no matter what challenges we're facing at the time, big or small, physically or otherwise.....

 

Gratitude, just like happiness is an active choice that you must choose to make again and again and again.....

 

Nochy lives that every day, he has shown me that, I just hope I can live up to his example.

Learning to live life with a petrie cast

So it's been a week since the surgery and I can't believe it. It's been so long and so short at the same time.

We are doing ok and it amazing how different every day is.

 

Never thought I would say this, but thank G-d for a portable commode. On days when by the time I get to Nochy he REALLY has to go to the bathroom, theres no time to get him all the way to the bathroom, so this portable toilet is the best thing ever.

 

Also, he can't stay in his chair the whole time- so we have been trying out different positions, especially to help him be able to get off his bottom, which gets pretty sore from sitting all day. This tummy on bean bag chair position also helps him to be able to play on the floor, which is great for all sorts of games.

 

The two most difficult situations are going to the actual bathroom and getting in and out of the house and into the car.

 

For the bathroom, this has gotten better the more the week has gone on. We can now drive him down the hallway to the bathroom, then get him up on his "legs". Then he can miraculously drag himself through the bathroom using his arms grasping the bathroom sink vanity. When he needs to only stand up and go to the bathroom, he can mostly do this by himself, and then wash his hands and be done. I just have to help him get back into the seat and spot him while he is standing so he doesn't fall down. When he needs to sit down to use the bathroom I have to pick up his legs and hold them for the duration and just pray I don't get peed on (yes that has happened).

 

The other really hard situation is going up and down the stairs in front of our house and getting in and out of the car. For the time being I have been "bumping" him down in his wheelchair. And then we pull the chair sideways really close to the open van door. Then we put a bean bag chair in between the seat and the car and I hold his legs and he crab walks sideways into the car. Then he buckles and I put the beanbag underneath his feet. We get out the same way. We have been experimenting with possibly using the wooden board underneath his legs as a plank from his chair to the car bench seat and this might be an easier surface to use to hand crawl across. We'll keep you posted.

 

The way up the stairs and into the house hasn't been easy- the "easiest" has been having his crab walk backwards up the stairs while I hold his legs. We have also done a fireman carry when there's someone else with me. We just have to be careful to never lift him from the top half of his body.

 

Week One is now done, only 5 more to go......

 

 



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.

 



Surgery Day

Well today was the day we've all been waiting for,  petrie cast day. Since thankfully I haven't had a lot of experience with surgeries this was brand new to both of us.
He couldn't eat at all today which was hard because the surgery was in the afternoon.
When they finally took us to the OR, we met a lot of different people,  dr roberts ofcourse,  but I couldn't believe how many nurses, PAs, and anesthesia people there were.
They explained that he'd breathe into a mask and he'd fall asleep and then they'd give iv sedation in the OR. Here's some pictures from before they got started.

Then they took him away, and I thought my throat closed for a second but it passed quickly and on came the waiting game.

It's scary to be in a surgery waiting room. Every time the door opens, everyone looks up, everyone is so nervous and tense.

They told us two hours so by two and a half hour I was going crazy.

Then when I was a minute away from losing it out came dr roberts.  He said the surgery was successful,  he put the casts through the feet and there's a  double bar.

They cut the groin muscle and inserted a camera so they could put his hip socket just where they wanted it and then casted him that way.  They also took a mold for the brace he's going to wear after the cast.

Once I was finally allowed to see him in recovery he was not a happy man.  Just pretty weepy and not happy about the IV.

Dr roberts mentioned that it is possible he may have to do the Petrie casts more than once,  phew, breathe, one day at a time.

Since then he's had some ice cream and water but not too much else.

He has said more than once,  "mommy this cast is so heavy".

His teacher called and he got the best smiles out of him so far.

That's it for today,  I hope we both get some sleep.

Two Days Away From Petrie Casts

So here we are two nights away from Nochy's petrie casts. I guess now from other stories and things I can only hope that it's his only petrie casting.

My good friend started a webpage which allows people to sign up to make meals for us and its so heart warming to see how wonderful and warm people are being. Its kinda making me weepy how amazing everyone is to us.

Some things are ready- like we have a. bean bag chair, we know how to tip he seats backwards in the middle bench in the van so he can sit, and we hopefully have an aide in school for his return-

But I didn't think of everything- like underwear- so I'm going to quickly bring some boxer shorts to the tailor tomorrow to see if they'll add some snaps or Velcro. Oops

The amount of things I know I haven't thought of is enormous.

They called us yesterday to ask what color casts Nochy wants- and I'm embaressed to say I don't know his favorite color.

Apparently he had thought about it already and so he quickly responded "light blue and make sure it's extra comfortable." I relayed that message over to the PA.

We find out tomorrow what time his surgery actually is, even though it is scheduled for 2:30. Hopefully it will be somewhat earlier than that- since he probably has to fast because of the anesthesia.

My stomach hurts, all my kids are sick of it already- they just want it to be Thursday- casts day- because I think the tension is getting to all of us. My husband is actually in Israel, poor guy, and he'll return Friday morning after the surgery. Its not ideal, but we needed six weeks so we could get the casts off in time to go on the rides at Disney world.

That's it for now- more to come soon.

One Week To Go and Counting....

T-minus one week from the procedure.

The very last thing we had been waiting for was another consultation from Dr. Schoenecker in St Louis who is a top pediatric guy who wrote the study that our Dr Roberts is basing his opinion on to follow this particular treatment recommendation.

The longer we went without hearing from him, the more nauseous it made me. Like what, we were going to stop this train in its tracks? What were we doing here?

I had a really great davining (prayer) session Tuesday morning, and I asked G-d for clarity- and I felt much better after that.

That night I had work and saw clients until 9:05  and when I went to take my phone off of silent- there it was, the expected phone call form the 314 area code.

I sat in my office and listened. The good news, he agreed with everything Dr. Roberts was recommending-

The bad news- he warned me, he said just for my sake and my son's sake- that this is a process that may take a few years and he may be in the brace after the cast for 6 to 18 MONTHS!>!>!>

In some ways I felt free to start planning and move forward, which was awesome. In other ways, I felt suddenly sad, so sad. Its so much for a little guy to have to go through. Its a really long time to not live a "normal" life. It is a hip, and not a heart- but this is also a nice sized chunk of his childhood.

Monday night Nochy has his last Physical therapy session for awhile. Afterwards in the car driving home he said "mommy, can you turn off the music I want to ask you questions about my cast." So we talked, and when we got to the part about the brace- he started crying. He said "I can handle the six weeks in the cast, but why do I have to wear a brace afterwards- why can't I just be better after the casts already."?

So hard, I don't have an answer...

That night I googled- I found this video- which made me cry and made me smile at the same time..

And now I am frantically trying to put plans in place, meals, carpools, picking up my kids, swimming lessons, etc. etc.

Thank G-d, I have amazing friends and family- I don't know what I would do without them.

Last night my husband and I went away for the night to a hotel. In my head I kept thinking of it as the last moment of calm before the storm. 

Its like training for a marathon just got be methodical, planful, and calm- but at the end of the day- you never know what could happen- and we're just going to roll with it.

The Preparation

Tomorrow will be two weeks until the "surgery" and its a weird state to be in. I know I need to be preparing, but I cannot for the life of me figure out what I'm supposed to be doing.

Well, for the first few days I made a lot of phone calls and told a lot of different people about what was happening. Friends, family, teachers, siblings teachers, etc. I felt like I could have recited what was going on in my sleep, even though each time I said it there was a pit in my stomach.

Ironically, I thought I would be the most worried about work, and in truth I am the least worried about that. For the past year I have felt anguished about trying to decide whether I should stay at the agency I work for, should I start a full time private practice, what are the benefits and risks to both, and it caused me a lot of heartache.

I knew, without even saying anything, that my supervisor, co-workers, and the whole agency would stand behind me for this no matter what. And they did! The first words my supervisor said was "anything you need, just let us know."

But I still do need to be clearing my calendar and preparing a lot of things to be able to leave work with a clear head to stay home with Nochy for a bit.

Then I spoke to the head of the OT department at the hospital. We talked about his wheelchair, where he's going to sleep, how he's going to Si tin the car, what he's going to wear, whether or not he'll be able to return to school, etc. It was helpful and scary at the end same time.

Since one of my goals of this blog it to help other people who are going through it- I'll be specific in some of the suggestions I'm getting.

-we're probably moving Nochy downstairs to the den for at least the first few weeks so we don't have to worry about stair (we'll set up a baby monitor so we can hear him and come back down)

-He needs tear away pants, though one mother said she just added snaps or Velcro to her sons existing pants.

-We are going to have to adjust one of the captain chair seats in the middle row of the car so that it leans back and has space for him to have his legs propped up. We're going to need to bring in pillows or something to support his legs in the car.

-Not sure he's even going to fit in his classroom, which makes me nervous, I need him to go back to school, I cannot be home for 6 weeks, but I also really need to take deep breathes and just take this whole thing as it comes.

-he may not fit into the bathroom in our house- which means a "commode" he can use privately in a bigger room- oy, just oy on that one.

-Someone suggested a bean bag chair, that might be a comfortable place for him to sit and to be- so gotta start looking for one of those

I think that's it for now. I feel like a tornado is coming, but I don't know how to prepare properly I also know I have so many family members and friends who want to help, which is comforting- but since I don't know what to do, I also don't know what to tell other people to do.

I spoke to a mother in New York who's son has the same thing and the most important thing she told me to prepare for is to "just stay sane"

I'll have to work on that one