It’s been a year since Nora’s spine surgery.  Time has flown by and she really is doing wonderfully.  Sometimes it’s easy to forget just all she went through for over half her life, she’s an active, funny and kind little four year old now.  Now the only daily reminder comes when she asks you to scratch her back, her hardware is still visible and easy to touch under her soft precious skin.   Other than that you really would have no idea.

Lately there have been a lot of families asking for tips and experiences around planning for their child’s spinal surgery.  There were a lot of great tips I learned and some things I’ve learned since then too that I think are very helpful. I’ve broken it down into categories below.

Preparation before Surgery and Meeting with your Child’s Surgical Team 

There’s no question, I truly respect, admire, trust and am utterly grateful to my daughter’s surgeon as well as his team.  We had several meetings and appointments before surgery and covered a lot, but there are a few things I wish I had asked or inquired about more.

Blood Transfusions
We knew going into this there was a good chance she would need a blood transfusion. Transfusions are not uncommon in spinal surgeries that require excisions (removal of vertebrae) of some type.  We knew this for a long time and had to fill out all sorts of paperwork beforehand.What I didn’t know was a transfusion might be needed post-op.  That’s also what happened with Nora.  She lost over a 1/3 of her blood during surgery.  Hearing that, I will admit, kinda freaked me out when I heard it.  She was struggling post-op to bounce back.  Her labs just were not showing improvement like they had hoped.  Three days post-op they ordered a transfusion.

Looking back, I wish I had asked more about this beforehand.  How do they determine the need for a transfusion in the OR, what’s borderline? If labs are questionable post-op how long and often are they monitored, what is the criteria to determine if a transfusion is needed?  I felt like we were in limbo each day she wasn’t improving and didn’t really know what all we were looking for to determine if she needed one or not.  I also didn’t know a transfusion takes hours.  In my mind it was something like it is on TV hospital dramas where they seem to pump it in right away.  Because of the risks involved in a transfusion, they do it very slowly, but still have to do it in a set time.  Kids are very closely monitored during that time too.  Fever spikes can happen and can impact the transfusion all together.

Post-Op Constipation
This is a subject no one really wants to talk about much and if you know me well, in general, I’m not one for “bathroom conversation” at all.. This was only briefly talked about at our pre-op meetings.  It was a subject folks in our online support groups didn’t touch on much either.  And yet, this was a HUGE issue and concern for us, and since then I’ve learned it is for many kids.We all know surgery puts the whole body, including the digestive system to sleep. The longer the surgery, the longer it takes to “wake up” the system.  Plus you have very strong narcotic pain meds in the system and they just so happen to have the nasty side effect of constipation.

Nora’s surgery was tough, she struggled post-op with some pain, low oxygen stats, low hematocrit, hemoglobin, etc – which lead to the need for the blood transfusion. All of these things combined and the fact that she was just barely three years old contributed to her refusing to eat much of anything for a few days.  Day one we got her to eat Popsicles and lots of juice and water but  that tapered off into the night and she just didn’t want anything… for days…not even her favorite foods.  It’s impossible to rationalize with a three year old and unfortunately her refusal to eat didn’t help the building constipation issue.  Mirilax and Colace are added to food and drinks to help with constipation, if we couldn’t get her to eat we really couldn’t get them in her system.  Plus fiber and fluids are key to helping but nothing was going in.

She was eventually so uncomfortable and in a good deal of pain from the constipation. A suppository didn’t help much and we had to resort to an enema, which also didn’t completely help.  Administering those to a tiny child in pain was downright awful to witness.  Then watching her deal with the pain, discomfort and confusion that goes hand-in-hand with the effects of those meds was one of the hardest things for me to watch during her recovery.  I was so not prepared for that.  Once we got through one long afternoon of dealing with those, I locked myself in the bathroom and cried into a towel so no one would hear me. It was that awful to see my little girl in so much pain.  We ended up having to do a few suppositories and enemas during our stay and even when we got home.

I have since learned, some surgeon’s prescribe stool softeners and other constipation meds for children to take BEFORE their surgery.  This is something I would recommend everyone ask about.  I’ve heard from several parents who believe this helped their child.

If your child can chew gum, be sure to bring sugarless gum to the hospital with you.  A study was done that showed spinal surgery patients who chewed sugarless gum several times a day post-op had bowel movements on average 30 hours before those who did not.  Nora didn’t know how to chew gum at the time, but looking back I might have taught her how to a few months before surgery.

Expectations
We were told we would most likely be in the hospital X number of days.  So in my mind, barring any major major complications – which I refused to think about-  we would be there X number of days.  I never considered complications that would be considered minor in the grand scheme of things.  Complications that would mean we would be there longer.  So I didn’t pack accordingly.  I didn’t pack enough cloths.  I tried to pack lightly as it was and was already low on things.  My advice is to plan on having two extra days worth of clothes with you.  It worked out for us, unfortunately Nora had vomited one of those last days all over me and herself, that was when I learned our hospital floor had a washer and dryer for families to use.

The Ice Machine Ice Pack Pad
Our hospital provided us with this awesome little cooler with a pad attachment that plugs in called an Ice Machine, simple enough . You can only get these things by prescription. They way they work is you fill the small little cooler with ice and water, plug the cord in and it has a long attachment to  a pad that’s about 12”x12”.  The pad was put under Nora’s back before she even left the OR.  It runs the cool ice to the pad and lasts for hours and hours.  You never have to move the child to put a new ice pack behind them and it’s super thin. It was a great help and it came home with us.  We used it for about a week post-op. I’ve learned not a lot of hospitals use these with our kiddos.  There’s no doubt it was a huge help for us, I highly recommend asking for one.

What to Pack for Your Hospital Stay:

Now is not the time to hone in on your light packing skills.  By all means don’t go crazy, but don’t aim for the bare minimum. It’s better to be overly prepared.

Snacks and drinks – Matt and I never left the hospital, in fact it was days before I really left the room. Matt only occasionally left the room and went to the cafeteria area, he really only went when he was on a mission to track something else down.  We had the ability to order (and pay for) food from the room service menu and that’s mainly what we did but it is still a limiting menu.  The coffee, drinks and snacks were minimal.  We had access to a kitchen on our floor that had a fridge, microwave, even a stove to use. Bring snacks and your favorite beverages.

If your child is a picky eater, check out the room service menu BEFORE your child’s surgery.  I was able to just call and someone emailed it to me.  I was glad I did, it helped me figure out some other foods, favorite food to bring with for her.  Granted she wasn’t into eating any of it, I’m still glad I brought it just in case.  They will want your child to try and drink a lot of fluids so if your child has a favorite beverage that the hospital doesn’t have, like Gatorade for example, bring it.

Lollipops and candy – I brought these for Nora to have and also used them as bribes and incentives.Lollipops also work very well as “chasers” following oral meds that have a terrible taste

Bedding – Blankets and pillows for yourself and well as your child. I mainly focused on bringing these things for Nora and figured Matt and I would just make do.  Hospital blankets tend to be stiffer and not as cozy as a favorite from home.  So I wish we would have brought a couple of nicer blankets.  Thankfully we had family who brought us some.   Our child’s hospital room was very nice actually and had a couch that pulled out into a small bed like thing.  We were advised it wasn’t the softest and most comfortable sleeping pad under and if we had camping sleep pads, we should bring them, so we did and that really helped.

Clothes for yourself, like I mentioned above, pack a couple days worth of extra clothes. As you would imagine bring comfy clothes.  Lounge clothes and sleepwear you are comfortable in and comfortable having strangers see you in.   Zip-up hoodies are great.  Many hospitals are cold. Our room was actually warm at times, but our stay was also during a week of close to 100 degree temperatures outside.  Slippers and/or comfortable slip-on shoes like Crocs are key.  You will want to bring a set or two of pj’s or comfy clothes for your child too, they might want to wear something other than the hospital gown. Nora wore the gown till the day she went home and was happy wearing a nightgown for the ride home.

Movies, Tablets/DVD Player– Our room had a TV, DVD player with a Playstation 3 so we brought DVDs. I didn’t bring a ton, but looking back I wish I brought more.  Toddlers are picky and suddenly she didn’t really want to watch any of her favorites.  After watching Charlottes’s Web three times in a row (granted she slept through much of it) she then only wanted to watch Mickey Mouse Club on the Tablet. We had to have it play season after season on repeat for something like 12 hours or more straight, through the night even it was just background sound for her. This is when I realized we needed an extension cord.  The battery would die and the only outlet to plug it in was not in an ideal place.  This is an odd one, but I’d pack an extension cord for sure.

Toys– Bring a few favorites, like stuffed animals, things that make your child feel safe and happy.  Then go to the dollar store or even toy store and buy a couple of news toys.  The cheap easy dollar store toys work well as quick and easy distractions if needed.  Your child might not be into them long, but that’s ok.  A lot of their recovery will involve doing things they don’t want to do, incentives and distractions really help.  A friend gave us this silly goofy little hamster thing, that rolls around on the floor says silly things and does silly things.  It was AWESOME because it was the one thing that got her to agree to stand up and take a couple of steps, which was all she could do, but it was that toy, nothing else.

Bubbles, pinwheels, kazoos, and party favors – these are key for helping a do their respiratory exercises that they have to do to get their lungs functionally fully again after being intubated for a long surgery.

Toiletries – The obvious, shampoo, conditioner, soap, lotion, chapstick, toothbrush toothpaste, hairbrush, hair ties, a little make-up if that’s how you feel most comfortable.  For your child, shampoo, conditioner, soap and DETANGLER SPRAY and LEAVE-IN CONDTIONER for girls especially.    Nora didn’t shower till her last day there but her hair was a tangled mess.  If you can, put two braids in your child’s hair down each side of her head the day of surgery, and leave them in as long as you can.  This will really help with knots and tangles.

Ear Plugs – There’s much commotion that happens in and out of the room all day long and all night long. Nora’s oxygen stats were not stable for days and the monitor would beep and beep till a nurse came in if you have both parents in the room, ear plugs might help one parent get some sleep for a bit.  We tried sleeping in shifts.

A lot of families like to use essential oils.  Feel free to bring your diffuser and favorite calming oils.

Notepad – Our hospital provided us with a nice little bound notepad and pen if yours doesn’t, bring one to take notes in.  You will want to take notes on everything from what they eat and drink, when and how much, to care instructions and it’s a good place to write down any questions you might have.  It’s easy to forget your questions when you are sleep deprived.

Preparing Your Young Child For Surgery

• Read books or watch movies or TV shows with your child about going to the hospital. We found the book Franklin Goes to the Hospital and Critter Goes to The Hospital to be really good books.  The cartoon Doc McStuffins was helpful too.
• Lots of  medical play by taking turns playing doctor and patient. Include medical equipment if you can.  Through all of our castings we aquired a pretty sweet doctors/hospital kit.  We have been role playing for a long time and We’ve really found it to be helpful.
• Don’t tell your child about the surgery weeks in advance.  It’s just too much time to make them worry.  I would suggest consulting with your hospitals Child Life department on when to tell your child and how to tell them.  Always be honest, but keep it brief and simple.
• Allow your child to talk about their thoughts and feelings.
• Let your child  help pack or mention a few things they would like to bring.