Surgery Tips for your Tubie
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My little Lo has gone under anesthesia 21 time for surgeries and procedures on his road to breathing and eating with ease. We are still in the eating battle and it's a slow one. The fact that he's only 15 months should speak to the fact that we're pretty used to preparing for this type of thing. In fact, we feel like pros in our home on how to prepare for surgery days. A close friend recently asked me for surgery advice and after an almost two hour phone call, I realized my tips needed to end up here as well. What I thought would be 5 tips to making the day go smoother ended up being many more than that. Hopefully this long read can ease some worried minds out there.

1. Take notes! 

You'll get a call from scheduling a few days prior to your surgery. They will have a lot of specific times for you to write down including when to stop solid foods, when to stop formula, or other supplements, when to start and stop pedialite or clear fluids, and when and where to meet. Write it all down. Put it in a place you won't forget! For our family, this is Google Calendar. 

2. Inform family and friends ahead of time of how you will notify them with updates. Maybe you could designate one person to relay information or prep an email ahead of time. Nothing is more conflicting than the concerned family members who want an update on the day of. They all have good intentions and want to show their love as well as be in the know, but it's easy to let the 'notifying' take over the majority of your day to the point where you'll forget information or be distracted sharing information instead of HEARING new information. These messages of concern from others can slowly pour in as phone calls, texts, Facebook messages, etc. It can be very overwhelming.  I've started a closed Facebook group for my son and my family and friends and they know where to go for information on the day of and I write everything down when my head is clear only ONE time. Then I focus on my son. Personally, this has now served as a great documentation of procedures and dates and isn't drifting in public Facebook world for anyone to see. They must be approved by you to see posts.

3. Tubby time. 

You'll need to bathe your child the night before surgery. I don't allow big brother in the tub on surgery eve just because it's usually more wild and messy that way. If a surgery is scheduled for later in the day, I even prefer to do the bath the morning of so that they are very clean when entering the hospital for surgery. I use adhesive remover before hand to get any stubborn tape marks off of the tummy before a warm soapy bath. Personally, I use this time to do some serious praying and meditating about the procedure and plan for the surgery. It's been a quiet, consistent, one-on-one time with my son to focus on what he's endured already, and what is to come and I've really come to cherish this time. We usually talk about how brave he is although he'd rather splash and play at this age. I don't use lotion afterwards to avoid bringing more chemicals or perfumes into the OR during surgery.

4. Make 'surgery eve' more bearable. 

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More often than not, the feeding pump needs to be stopped and reset in the middle of the night from formula or pediasure over to clears (pedialite). I've smartened up over the months about how to do this. At first, I'd go stop the pump, walk down to the kitchen, empty and rinse and flush the bag, open up the pedialite, measure and do the math for rates, amounts and timing, prime the pump with pedialite and go back up to start the pump. I've been tired and fuzzy and woken up to either a beeping pump with an error message, left the tubing cap on which lead to the pressure popping it off and feeding the bed all night long, I've left the extension clamped, etc. The list goes on for reasons to NOT leave all the work for 1 or 2 am. NOW... I set two different bags (formula and clears), and have even gone as far as to just simply write the exact amounts, rates, and times for each pump cycle with a sharpie so that when I'm overtired and dragging my feet up to the nursery, it's now fool proof. I highly recommend doing this as well as priming each bag ahead of time so you can minimize how many terrible beeps you need to fill the house with at that hour. Stick both in the fridge until you're ready to use them as pedialite needs to be refrigerated after opening.

5. Bring your tubie's personal tube extension and pump. 

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The docs will use an extension during surgeries to vent their tummy into a diaper. You'll not only want to bring a new clean extension so that it's sterile for surgery, but either flush it clean and change the diaper often after or insist that the nurse does. You'll be surprised what can come out in such a short time when being put under. A pump backpack is a must if you don't have one by now. This one I found at Buy Buy Baby and adapted it but I also have used the 'toddler leash backpacks' from Skip Hop. Although pricey, there are many sellers on etsy that adapt these if you aren't up for the crafty challenge yourself. The bags can hang ANYWHERE in a recovery room and if you show the nurse that you have what you need to start running the pump, and if you start on pedialite at a HALF rate, you'll be out of the hospital much sooner than if they order a pump and all the parts with it while you're waiting. It's okay to tell a nurse what you usually do at home with the pump instead of waiting for them to ask. Every nurse's experience with a feeding tube and pump varies and I'm sure they'd appreciate knowing what YOU prefer and feel comfortable with as far as feeds are concerned. They will provide the pedialite.

6. Bring comfort items.

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 I've learned that sounds and scents are the first senses that you wake up to after coming off of anesthesia. Any comfort items like a blanket or pillow from home will be more comforting to them than you'd think when they first wake up. My son usually startles awake and is inconsolable for 10-15 minutes. Those items are what help him fall back asleep initially and then he wakes up calm later on. I've learned the hard way to never leave a favorite item behind. Any soother or sound machine can work wonders during this transition of waking up as well.   7. Wear comfortable items YOURSELF.   No one will care what you look like. You'll probably be puked on. You'll be nervous and clammy. You may drift off to sleep while rocking your tubie back to sleep.  I personally break a sweat from the amount of bouncing, swaying, chasing and distracting in a small room that I do for hours before and after. You might be admitted over night... It will be a long day. Leggings and loose fitting clothes are a must!  8. Bring a sherpa.  You will struggle to carry the load on your own. It could be a spouse, friend, or parent, but it is always more helpful to have someone to pass the time with, help grab items that fall on the floor, another set of ears taking in information, lend a helping hand, and help haul your items from room to room. Both Arlo's grandmas have been so helpful to us during surgeries and we're thankful everyday for their efforts and support.  9. Bring things to do for yourself!  I've made the mistake of thinking I wouldn't have time to do anything other than worry and have often wished I would have. I've also made the mistake of bringing too much that I end up being too distracted to try and "work" or accomplish a very elaborate task. Find things that make you feel calm and keep your mind busy, yet can also be dropped in an instant without adding more stress on where to pick back up.  My favorites are sudoku, magazines, and of course, pinterest on my phone or computer. Which leads me to the next tip...  10. Bring a phone charger!  My gracious mama gifted me with a 10 foot cord so that I didn't have to sit in the seat right next to smelly Johnny eating his fish sandwich while he fought with his family just so that I could use the only outlet that was under his chair.   11. Pack an overnight kit.  There are certain checklists that the pulmonologists, anethesiologists, and nurses need to cross off before sending you back home. Depending on the time of night, the age of your child, their oxygen levels, as well as other vitals post op, there is ALWAYS a chance you could stay over night when you didn't plan to. Bring bare bones items like contacts, glasses, deodorant, face wipes and a tooth brush for yourself and essentials for your child just in case.  12. Socks or Booties for your child.  I've discovered the BEST pair of booties for hospital days. These are made by  Zutano . 

I've learned that sounds and scents are the first senses that you wake up to after coming off of anesthesia. Any comfort items like a blanket or pillow from home will be more comforting to them than you'd think when they first wake up. My son usually startles awake and is inconsolable for 10-15 minutes. Those items are what help him fall back asleep initially and then he wakes up calm later on. I've learned the hard way to never leave a favorite item behind. Any soother or sound machine can work wonders during this transition of waking up as well. 

7. Wear comfortable items YOURSELF. 

No one will care what you look like. You'll probably be puked on. You'll be nervous and clammy. You may drift off to sleep while rocking your tubie back to sleep.  I personally break a sweat from the amount of bouncing, swaying, chasing and distracting in a small room that I do for hours before and after. You might be admitted over night... It will be a long day. Leggings and loose fitting clothes are a must!

8. Bring a sherpa.

You will struggle to carry the load on your own. It could be a spouse, friend, or parent, but it is always more helpful to have someone to pass the time with, help grab items that fall on the floor, another set of ears taking in information, lend a helping hand, and help haul your items from room to room. Both Arlo's grandmas have been so helpful to us during surgeries and we're thankful everyday for their efforts and support.

9. Bring things to do for yourself!

I've made the mistake of thinking I wouldn't have time to do anything other than worry and have often wished I would have. I've also made the mistake of bringing too much that I end up being too distracted to try and "work" or accomplish a very elaborate task. Find things that make you feel calm and keep your mind busy, yet can also be dropped in an instant without adding more stress on where to pick back up.  My favorites are sudoku, magazines, and of course, pinterest on my phone or computer. Which leads me to the next tip...

10. Bring a phone charger!

My gracious mama gifted me with a 10 foot cord so that I didn't have to sit in the seat right next to smelly Johnny eating his fish sandwich while he fought with his family just so that I could use the only outlet that was under his chair. 

11. Pack an overnight kit.

There are certain checklists that the pulmonologists, anethesiologists, and nurses need to cross off before sending you back home. Depending on the time of night, the age of your child, their oxygen levels, as well as other vitals post op, there is ALWAYS a chance you could stay over night when you didn't plan to. Bring bare bones items like contacts, glasses, deodorant, face wipes and a tooth brush for yourself and essentials for your child just in case.

12. Socks or Booties for your child.

I've discovered the BEST pair of booties for hospital days. These are made by Zutano

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They are great for a few reasons. First and foremost, they're comfy. The OR is cold and the docs and nurses try their best to keep patients warm when they wake up. Secondly, my son is at that busy age where everything is a toy. Usually the non-toys are the most enticing like boxes or combs, and in this case: red blinking pulse ox stickers! They need to keep the blinking stickers on post op for monitoring but with these booties, he isn't tempted to keep pulling it off to look at or play with. The booties are, however, loose enough that the monitors still work. Thirdly, the IV. Sometimes your child's IV will be in their ankle, sometimes the arm. Sometimes elsewhere when they need to get creative ;o) The booties serve the same purpose here in that it protects the IV from moving around or being snagged. It's not a pretty sight when this happens- take my word for it! Also, they're cute. Fall is coming. Go find your babe some booties!

13. Make it special.

 

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We usually swing by the hospital gift shop to pick out a non edible 'fun distraction' item whether it's a book, stuffed animal, or squishy fidget. Sometimes having something new (even if it's as small as a new song, movie or app on your phone) can be just the distraction to hold their attention for all the waiting and recovering that's required.  You can only watch the same episode of Daniel Tiger so many times before it's just background noise. We picked up this adorable stuffed Mater for $6 in the gift shop and Arlo loved playing with it, checking his vitals with the nurse, giving him a matching hospital bracelet and allergy tag and it was also fun for big brother at home to Facetime and text with us to check in on the other half of the family and see a new, familiar Cars face.

Speaking of making it fun- try to give yourself something to look forward to for yourself.  Whether it's a treat or new read in your bag or in my case- a chocolate croissant and latte down in the cafe. You can take a pager with you and have some time to yourself while your child is under. I'm sure I'd be sticking to my diet much easier if I didn't feel to compelled to take these little treat breaks for myself each time, but chocolate and caffiene are a prerequisite for me to get through a hospital day. It's mentally and emotionally hard. Just eat the damn croissant. Drink the extra coffee that day so that your other children can see some life left in you at the end of the long day. You deserve the break and your kids want to see you happy, too.

14. Be proud!

 Photo courtesy of  Spottswood Photography

Photo courtesy of Spottswood Photography

Children's Hospital of Wisconsin always gives an award for Bravery as well as a Bravery bear. We've now made a collection of these bears and use them as keepsakes for the times he's been so strong. I can't wait to share each part of this crazy journey with my son in a way that he'll understand some day. Whether you do journey beads, collect items, take photos or journal, these difficult hurdles are essential parts to your child and family growing, thriving and surviving and need to be celebrated. They are all part of your family's story. Take what you need, give it your all, and know that God only gives you and your family what you can handle. Turns out for some, that can be a lot.

 

Emily Jasinowski