Tips for Patients (and families)

• HAVE PATIENCE *for everyone*

  • this is not an easy journey. It's hard for the whole family and ESPECIALLY for the patient. 

  • be ready for the days that don't go as planned. you will get through this ♡​

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• advocate for yourself

  • ​no one knows exactly how you’re feeling so speak up! people want to help you

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• don’t take meds on an empty stomach

  • unless you KNOW you have an iron gut, make sure you have at least a saltine in your stomach before you take your meds (don't want any of that nausea)​

  • applies to nighttime meds too!

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• relax

  • ​don't try and force/work your muscles, they’ve been through a rough time. let them rest!

  • this part was really important for me to hear because I thought I had to "teach" my muscles to be a certain way and it's wayyy too early for that

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• tie your hair up

  • ​(if applicable) I think double french braids are the best way to avoid a lot of tangles, your hair would get really tangled if it was down

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• use the grippy socks

  • the hospital will provide you socks with traction, please use them! falling would suck a lot

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• set a timer to get up and use the bathroom

  • ​for the first few days after the catheter was removed, I had to use the bathroom so much (every hour and 30 min) and if I slept too long I felt like I might pee myself — it was not a good feeling

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• sleep when you feel like it

  • don't try to fight the urge to sleep, be mindful and let your body rest when it needs to

  • *for parents*: if possible, take naps when your child takes naps, everyone is going to be really tired and every nap counts :)

  • lots of naps = yay! 

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• have faith in the doctors/nurses/process *for parents too*

  • this surgery can be scary for everyone, but have faith knowing that the surgeons & nurses are excellent at what they do (word of advice from my parents to other parents)​

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• ask for some wipes if you feel dirty

  • obviously, the person having surgery won't be able to shower for at least a few days when the catheter/drain tubes are still in, so asking for a wipe-down could help you feel a little less crusty​

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• fight the constipation

  • being constipated absolutely sucks so much (my gut felt like a rock), here are some ways to get rid of that:​

    • drink the laxative ​they give you at the hospital

    • drink prune juice

    • drink senna tea

  • if you still can't achieve a bowel movement, that's totally ok. its not required to get discharged from the hospital (the meds make you constipated so we all get it)

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• don't forget about your spirometer

  • your lungs will thank you​

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• go on walks but don't over-do it 

  • if you feel good, get those walks in (they're really good for you) ​

  • but also know your limits and listen to your body

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• Stay at the Ronald McDonald House if possible *mainly for parents*

  • my family and I stayed at the Ronald McDonald House and it was absolutely wonderful. the people are so so nice and they are very well equipped to help Scolis (they have a zero-gravity chair, recliners, and lots of different pillows to help you get comfortable)

  • they do their best to take the stress off of the families that stay there and it definitely helped a lot

  • 100/10 I'm so thankful for this place

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• Invest in supportive slides/shoes

  • *From a parents POV*: you'll be on your feet quite a bit so make sure you have a pair of shoes or slides to support yourself (your feet will thank you) :)​

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• tummy time

  • I'm not sure if this would work for everyone, but I found it really helpful to lay on my stomach especially after laying flat on my back for longer periods of time. It really felt like I was able to get a deep breath & it was very refreshing​

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• ice chips to stay hydrated

  • the hospital has a wonderful chewable ice machine that you should definitely take advantage of​

  • crunching on them brought me a lot of joy, 100/10

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• ask for the x-ray team to slow down when they come to your room

  • I had to have a chest x-ray almost every morning in the hospital and the x-ray team did not waste any time (they went really fast and sometimes it was just too much)​

  • I had a few painful experiences because they have to slide a board under your back and it's just really uncomfortable in general and not a good way to wake up

  • I would suggest asking for your nurse or parent to help sit you up beforehand and voice that you need the x-ray team to slow down a bit. after you have been helped to sit up, they can put the board behind you and you can slowly be lowered back down. in my opinion, that was a lot better than laying down and them shoving a board behind my back

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• adding a flat(ish) pillow to the back of the zero-gravity chair 

  • this was super helpful to me because I hated having a concave C shape when I was laying in the chair and it helped to put a flat sleeping pillow behind me​

  • place it vertically and not horizontally (a.k.a. where the height is taller than the width)

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• stay hydrated

  • so so so important to drink! the doctors recommend at LEAST 2 liters of water a day​

  • if you are having a really rough go with muscle spasms, try electrolyte water

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• caring for your scars

  • I have sensitive skin, so I thought I'd share some ways that helped my scars feel better -- totally dependent on the patient though :)​

  • using Aquaphor or Vanicream is a good way to prevent dry skin around/on the incision & from my experience, is not irritating at all 

  • the only thing that bothered me when using a heavier moisturizer was having it stuck on my hands (especially Aquaphor) & having to aggressively rub it in, and these silicone applicators made things easy and clean. It also was better than wasting a bunch of Q-tips which weren't as smooth or fast :)