We are officially six months out from Fulton’s spinal fusion surgery. While we will be sticking with some of the care methods we adopted during his recovery, life, for the most part, has gone back to normal for him and us. It’s a new normal; the rigidness we feel is his body, not an external brace and single person transfers are a thing of the past. Ultimately we could not use the Hoyer lift as it was actually contradicted for spinal fusion recovery (guess I should’ve double checked with the surgeon before purchase!) But, the use of the Hoyer sling and a draw sheet has been great for transfers. So for now, the golf cart sized lift will stay in storage and we will continue with the two person transfers that work.
Now that we are past the pain and uncertainty of recovery, I can reflect back and, as am wont to do, try to pull some useful information from the whole experience. I also reached out on social media to see what experiences other parents had in regards to their chidrens’ surgeries and thought I would compile a useful list of tips. Maybe you won’t ever need it, but maybe you or someone you know will. Tuck it away in the back of your mind (or save it to Pinterest) so you can reference or share it when the time comes.
1.Be honest with your children about the surgery in an age appropriate way. If you’re not sure how to talk to them, check with the hospital’s Child Life department, or even get a child life specialist to talk to your child with you. Arrange for a tour if you think it would make your child more comfortable. Make sure you’re informed so you can answer your child’s questions, or write down their questions so you can remember to bring them up to the doctor or nurses directly.
2.Line up practical help for yourself in advance. Unless its a last-minute emergency surgery, you’ll be able to reach out right away for meals, childcare, transportation or whatever you think would most help you on the day of surgery and immediately afterwards. Some parents want friends with them at the hospital during the procedure. Others want to be alone with a spouse. Let people know your preferences ASAP! What would add additional stress to an already stressful event? Coming home to mountains of laundry? Ask someone to do it for you. Do your other children still need to get to sports practice? Ask about car pooling. Error on the side of asking for a few days or weeks too long than not having care for long enough. You can always cancel help if things go better than expected. I thought we’d only need a couple weeks of grandparent support, but thankfully both sets were able to make return trips to continue to help when I needed it. We bumped up nursing care on the weekends with the expectation of ending it after four to six weeks. We wound up keeping it much longer.
3.Line up spiritual support. If your child is old enough, make sure he or she receives the Anointing of the Sick. Ask for prayers and update your prayer warriors with specific request. For us that meant prayers for pain relief, no infections on the incision, no problems with the hardware being placed, for an increase in appetite, and a decrease of side effects to medication. I also asked for prayers for myself. As surgery day drew closer, I found myself more anxious and awake and night worrying about worst case scenarios. I reached out and asked close friends to pray for this specific intention and found myself remarkably calm on the day of surgery. Even when Fulton began to cry and finally admit his own fears before being wheeled back, I was able to remain strong and reassure him without breaking down. Take a rosary with you to the hospital and a favorite prayer book to mediate on. I kept holy water with me at the hospital and we used it frequently. Ask people to pray or spend time in Adoration during the hours of surgery. People always want to help us in big hands-on ways, but I’ve always felt prayer to be crucial during these especially challenging times.
4.Write out a packing list of the essentials. Include a few of your child’s favorite stuffed animals, blankets, pillows, PJs, and toys- just enough to help them feel at home. I tucked a few things in Fulton’s backpack along with his iPad and charger. Tony took along a role playing game he and Fulton like to play together. Child life will have more toys and games for you to borrow. Hospital rooms are small and having less stuff to move around will make your stay easier. I asked that gifts and cards get sent to our house, and I would bring things in as space allowed. When people did arrive with gifts, we sent most things home right away so as to not add to the clutter in our room.
5.Take care of yourself so you can better care for your child. Create your own packing list. For me that included comfy clothes, slippers, my Kindle, my laptop and charging cords. I also had a bag of snacks just for me, including a couple bottles of water enhancer so I could continue to refill my water bottle at the water fountain on the floor, but get some extra caffeine and B vitamins at the same time. And most importantly SLEEP. I went home every couple nights to sleep. Even though Fulton wanted me there 24/7 I knew a week on a hospital fold out sleeping sofa would lead to my death. I needed to be alert when I was at the hopstal so I could make sure Fulton’s needs were being met, his pain meds were delivered on time and that I could remember everything they were trying to teach me about his aftercare. Don’t be afraid to care for yourself! You can’t do it all, so outsource what you can (see #2) and then practice self-care. If you don’t, who will care for your child while you recover from an illness?
6.Several parents mentioned the idea of keeping the big picture in mind. Following a major surgery, it will often get worse before it gets better. I was not prepared for the level of pain and discomfort Fulton would be in and how I would be on my feet all day repositioning him and trying to keep him happy, comfortable, and distracted. It was not at all like any other hospital experience we’d had up to that point and all I could think was I’m in for six weeks of this?! Thankfully, we weren’t but I had to focus on the idea that all his discomfort was temporary and that it would get better in time. Even Fulton had concerns and would ask if he would hurt “this much” in a week, or a month. I asked him if he felt better than the week in the hospital and he’d say yes. And then I’d ask if he felt better than the week before, or even a couple days prior and he’d usually say yes. Eventually he could understand that every day he was getting better so even if he was uncomfortable one day, it was still less uncomfortable than he’d been previously. Talking to other parents whose children went through the same surgery successfully made it easier for me to get a sense of what to expect. If you’re able to network with other experienced parents, I invite you to do so.
Now we can look back and say it was worth it, and when the time comes for Teddy, we have a much better sense of what to expect and how to prepare. Tony and I have a better ‘big picture’ view, and having witnessed Fulton’s recovery first hand will hopefully help Teddy be less anxious.
Has your child experienced surgery? What advise would you add? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
If you can, talk to the surgeon beforehand. Before my transplant (When we were still doing eval), I was actually really freaked about one aspect of the surgery, and after I talked to the surgeon, he said, I don’t even do it that way. So that lifted a HUGE burden off my mind. 🙂
Definitely on anointing, packing for yourself, and also, if you’re a parent that needs something to do (like my dad), maybe you can be the person who sends email updates/facebook updates to friends? I specifically asked my dad to do that because I knew people would want to know, and I knew he’d be good at doing it–and it would give him something to do. Because unoccupied parents can drive the kid crazy (or at least this kid, lol).
And yes, definitely be prepared for it to be worse before it’s better! But it will get better!
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