Saturday, August 5, 2017

10 Hospital Stay Tips for the Special Needs Parent

It's been flurry of activity around here this week and we leave for the hospital tomorrow! Between making sure the kids have all they need for school which is starting soon, planning meals and grocery shopping for the kid food next week when my mom is here, plus catching up on all the laundry, I haven't sat down a whole lot other than when I've been working my job.

Zachary had his final therapy sessions this week and we said goodbye to his therapist for the next 4-6 weeks. I'll admit I was a little emotional walking out of the therapists office. I think mainly because we have known about this surgery for so long and now it's finally here. I'm not quite sure I'm ready for all of this.

Monday will mark Zachary's 5th hospitalization and as I was thinking about "How to prepare for a hospital stay," I thought it'd be best to introduce you to one of my dearest and oldest friends Kim. As a teenager, she was more like my older sister. Oh the stories she could share. :) I'm pretty sure Kim was the one who taught me to TP a house. I'll never forget going with her family to drop her off at college and the trips to visit her in her dorm. Kim also inspired me in my walk with Jesus as a young stubborn teenager.

Thankfully social media has allowed us to stay in touch and both having special needs children has brought us back together amidst living thousands of miles apart. Over that past couple of years, Kim has spent, added up, almost an entire year living at the hospital with her daughter. If I could learn from anyone about hospital tips, she's the one to turn to.

After our messaging back and forth, here are...

Top 10 Hospital Stay Tips for the Special Needs Parent 

1. Ask about Ronald McDonald House room right away. 
    These rooms are in high demand! It can be a few days to get one.

2. Be a part of rounds every morning and don't be afraid to give your opinion. 
    No one knows your child like you do!

3. Take your own pillow/blanket for sleeping in the room.
    This is something I had never thought of. Duh! This is why I have friends to teach me these things!

4. Take a few of your child's favorite things from home.
    We already have a list started of Zachary's favorite toys and blankets to remember. He LOVES his rotating star globe at night and you can bet that's going on the list too. Anything to make him feel a little more at ease.

5. Take some of your child's tube formula if they are on it.
    Zachary and Kim's daughter are on a whole food formula called Nourish that they get through a G-tube. The GI doctor told me the hospital will "probably have it" but I'm not taking any chances. We'll be throwing a box of Nourish in the car with us just in case.  Zachary is also on an obscure kidney medicine that we're taking some of just in case it takes them a bit to get it in the pharmacy. Definitely not something I want to risk going without.

6. Ask if your favorite nurse can "primary" your child so that they will have your child every time they work.
   Once again, Kim to the rescue! This would have never crossed my mind.

7. Take a walk outside every day.
    It will help you avoid "hospital psychosis" or going a little nutty from never getting out.

8. Seek out healthy options for meals.
    Even bring your own healthy food! We will be bringing supplies to make our morning Shakeology and using the refrigerator in our hotel. Many hospitals have family gathering rooms on the hospital floors and will have a refrigerator you can use as well.

9. Find out if the hospital has a gym that family members can use.
    You guys know Peter and I love working out and it's not just for our weight. It's a complete sanity saver for me. We will be taking our computer so we can do workouts online and will definitely track down a fitness room either at the hospital or the hotel.

10. Reach out for and utilize your support system.
     This one is VERY hard for me. I'm a "do it all myself" and "I'm tough, I've got this" kind of mom. I'm already learning how much I'm going to need my "people" to get through Zachary's surgery and recovery.  The special needs journey in general is a hard hard road. We can only do it alone for so long.

If you are about to face a hospitalization with your kiddo or are suddenly facing an unexpected season in the hospital with your child, I hope you find these 10 tips to be sanity savers. Hang in there tired mama!

For probably the quickest updates on Zachary, especially next week, follow my Facebook Page or Instagram. And we plan to upload video updates to YouTube so you can see how it's going.



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