Just an update on how hospital life is going. As always, Hayes had his own plan. The original plan was to operate on both hips and pelvis with the possibility of casting. They have been out of socket for well over a year and one side was becoming more of an issue so, it was time to do the surgery again. Our orthopedic doc and his team are so great and always give Hayes the benefit of the doubt — they should know by now he writes his own book though. It took 5 solid hours of surgery to get one hip set! Dr. said was one of the most difficult hips he’s ever done so…there’s that — had to pull out all the tricks. #proudmommoment LOL I’m going to look at as though we are keeping surgeons on their toes — increasing their ability to think outside the box in difficult situations, in turn making them better surgeons, so, you’re welcome. Needless to say, after all the hard work, he definitely got a cast to keep it in place.
This isn’t our first hip surgery, but it is our first experience with a spica cast and to say it’s intimidating would be an understatement. Spica Cast Info . Honestly, I’m mostly terrified of poop situations. You might be grossed out, but news flash, everybody poops. There’s even a book about it — many books in fact. Here are a couple of classics and they’re on sale. Everyone Poops (Turtleback Binding Edition) and Where’s the Poop?
After an approximate 48 hr nap, Hayes decided to wake up and as always, he is a total rockstar and so tolerant — way more than I am. We are hoping that his current wheelchair can be modified to accomodate his new “chap cast,” which is what I’m calling it now; because that’s basically what it looks like, a one legged chap. We won’t be surprised if he askes for a gun belt too now — and we’ll give him one. The equipment company came out to make adjustments, but of course Hayes wasn’t feeling well when they were here so we haven’t officially tried it out, but looks like we’ll be able to make it work. If not, we’ll have to get a wide loaner wheelchair to attempt to support him, which is obviously not ideal, especially for transportation and safety purposes. If it were up to my project controls, safety-first husband, we could just lay him down in the back of the car — I’m rolling my eyes so hard right now. #jesustakethewheel
- First time up in giant chair, puffy eyes and all.
We have had our fair share of hospital stays and they all come with their own challenges, other than the fact that you’re in the hospital, but this is definitely the first time during a freakin’ pandemic. The first time for everyone — patients, families, nurses, doctors, therapist, admin — everyone. So I have been staying by myself with Hayes since Monday while grandparents and dad hold down the fort. Unfortunately, we are in our third room and back in ICU. With the respiratory issues Hayes has, we have yet to be able to be discharged from a “regular” floor, but sometimes they insist on trying. I’m pretty sure they will have his file flagged now. #exceptiontotherule I may not be a doctor or have a medical degree, but I am a caregiver, nurse, case manager, therapist, advocate and mom to the one and only Hayes. Remember you are your child’s best advocate, so, don’t be afraid to ask questions and speak up about what you feel is right for you, your child and your family.
If you are wondering how I’m holding up, I finally took a shower last night without bringing the towels, that I made sure to remind myself to get from the nurse, in the bathroom with me. So — pretty good, I’d say. Those brown industrial-scented paper towels and shirt I’d been wearing for three days came in pretty handy. In all honestly, this may not be new territory for us, often it feels way too familiar, but it is a first time for a lot. So, I’m going to take a little advise from Brene Brown in her podcast Unlocking Us that I listened to while waiting by myself during surgery — which was a first for me. Name and normalize the feelings of anxiety and isolation I was experiencing — totally normal to feel those things in a first time situation. Put it into perspective — this is temporary — we can get through this step, we can handle a cast for 6 weeks — it will pass. Reality-check my expectations for myself. As much as I want to be able to handle all the moving pieces, be there for all the people, take care of all the things — I can’t. It’s not realistic. What I can do is give myself a little bit of grace, do what is in front of me and take one step at a time with the help of those around me, even in the midst of isolation.
Here’s to taking it easy on yourself, baby steps, ordering your favorite salad from Bellagreen…when you’re allowed out of the room again…remembering your towel, healing, trying again tomorrow and letting your faith be bigger than your fear.
Emily
Hayes sounds like such a trouper! So sorry you are having to go through this during this pandemic. I can relate with the poop concerns. Unless you’ve cared for someone that is incontinent, you have no idea about the planning involved for outings. Hang in there!❤️
He really is! I know you get it, thank you!
You are a rock star and the best at whatever you take on !!! Hayes always has his own plan, along with God to keep us on our knees 🙏🏻
Now it is time to get you both home !
Grandparents are happy to be able to help ❤️❤️ So proud of you and Chris!
learn from the best!
YOU!! Are an amazing momma and Hayes is an amazing young man! If I could hug you right now I would. You’ve been in my thoughts and prayers.
Thank you so much friend
Praying for a speedy recovery! I miss his big smile and cool shoes 🙂
Oh my. Most of us think the baby diaper explosions are bad. We have no idea, right?! Sweet Hayes. Praying for you all. And hope you can go home soon. Stay strong and yes, give yourself some grace. I can’t imagine how exhausted you must be. Prayers for rest for you both and a speedy recovery for Hayes. Xo
Thanks Michelle! He does have great style, lol. .Miss you all and hope you are well!
He does have great style! Thank you Leah
So many prayers rising up for Haysies healing, your strength & stamina & patience & hope for all who love him. New territory for sure but same mighty God. Thank you for reminding me & making me grin in the process. Love you😘
Thank you. Always thankful for you, your family and your prayers
Hayes gets his rockstar qualities and attributes from his momma! Praying for Hayes and his recovery. Praying for you as you as you face these days during a pandemic. Praying for Chris as he has to stay away. So many prayers for the Perrins! We love you all!
Thank you so much. much love to you all as well!
Hayes is definitely a trooper. Praying for his speedy recovery and for his entire support team of family, friends, and professionals.
God bless you all.
Thank you!
Well done Em. Covered all the bases with some great insight about caregiving. Love you guys so much.
Love you Bumpa
Thank you for sharing. Hang in there, you ARE the best for him. It looks like it will be an unbelievably tough road, but God graced him with such an amazing personality and bubbly spirit which has got to lift yours 😊. I know it is beyond crushing to see him hurt, but you love him so well! Praying for you all, I know the rest of the team is aching to be with y’all. Soon you will all be together again.
So true Holly! Hayes’ smile makes it ALL worth it. Thank you
I love that he is still smiling in the picture! That boy is something else. You are too, Emily! Hang in there. This is temporary. This is great progress for Hayes! There ain’t nothing else going on outside the hospital anyway. #covidsummer
So true! I keep reminding myself of that too — no where else to be! LOL Miss ya’ll
Once again, a beautiful reflection filled with wisdom, faith, and inspiration. Thank you for sharing this piece of your story. May God always fill you with His peace and grace. ❤️
Gosh you NICU nurses are making my eyes all watery today. So much love for you all.
Oh my goodness. From the very beginning Mr. Hayes has set his own course and rules 🥴😉. You are such a great mommy ( daddy and sister and brother,plus other relatives and friends are too). But with this covid crazy time – many things ARE changed. Thanks for sharing this in such an honest and heartfelt way. Keep that faith and do give yourself mercy. Keep looking to THE ONE Who holds you and Hayes in the palm of His hand. Love you. 💕
Oh my goodness, you guys are too much for me right now. We are so blessed to have had such amazing group of nurses in the NICU who set the bar extremely high for future nurses. What an incredible example you all were of how to care for and love with a Christ-like love us crazy parents and our tiny miracles. Truly a special place in our lives forever.
I love reading your posts always so upbeat, and positive and living His word. He’s so blessed to have you as his mama you are indeed his advocate and a such good one at that. And you are so lucky to have Hayes and him be such a little soldier for all he’s gone through, you always see that precious smile of his. Will be praying for you and your family, so good knowing your mom and dad are there to take care of your kids as good as you do. Hope the rest of his hospital stay goes well and you can get a little rest. Remember to take good care of you so you can take care of all those that depend on you. Prayers for you all and for Hayes to have minimal discomfort.
Em you and your family are incredible. I learn something from you always. Much love and many prayers. ❤️
JoJo
Love you!
Emily, well said. You and Hayes are both exceptional. Thanks for sharing. Love you.