Magec Rod – Exactly 72hrs before surgery

I have, officially, read the “Planning for Change” binder from The Crawford Spine Center (all 58pgs). I’ve read all about preparing for surgery, the stay at the hospital, and recovery afterwards. I joined a Facebook group for magec rod and many other groups related to scoliosis to ensure I am leaving no stone unturned and giving Cole every chance possible to succeed in this procedure. However, as I sit here, I am faced with the hardcore fact that no matter how much I read, no matter how much I educate myself, and no matter how prepared I get myself or my family… I cannot control this!

For those of you in the category of relatability, the most important thing for you to know is that these feelings of being worried, being scared, not knowing, not being able to control your own child’s outcome, feeling sick, feeling defeated, and really feeling sorry for yourself because the situation is not fair… IT’S ALL NORMAL and it’s all OK. Those emotions are to be expected in your situation and, again, it’s perfectly normal. Talk to someone, anyone, or simply write everything down, heck, maybe even create a blog! Now it’s game-face time! This is where you begin advocating to it’s fullest.

Cole needed to get prepared for this surgery and that meant the following; EKG, Staph screening, sedated MRI, x-rays, pre-procedure physical, blood work, and clearance from Nephrology, pulmonology, and ENT. It took me days to coordinate, but I did my best to bundle the appointments and make sure the blood work was completed during the sedated MRI because Cole is a very difficult stick and he stops breathing most times blood work is required because he gets so upset and his airway collapses. We traveled 336mi and 5 1/2 hours (one way) to Cincinnati Children’s Hospital because when you have a child like Cole you learn you control what you CAN. We can control the fact that he can be seen by the best of the best and for his airway that happens to be Cincinnati. Of course, his blood work for his kidneys came back worse than the last appointment so they needed another sample so we had this done at Luries and Cole (as usual) needed to be bagged (pretty much resuscitated) during this.

3 days prior to surgery, Cole is supposed to take Mira lax and even though he was cleared through his kidney doctor, this somehow wasn’t caught. Well, Mira Lax is horrible on the kidneys and with 35% function and only one kidney functioning he shouldn’t be taking any Mira Lax. I called the Doctor and informed them (yes, you heard right, I informed them). When you have a medically fragile child with so many different specialists involved, you realize very quickly there’s only one person that truly understands all of their anatomy, and that’s you. Nephrology focuses on his kidney, Pulmonary focuses on his lungs, ENT focuses on his airway, Orthopedics focuses on his spine, Urology focuses on his urinary tract, and you focus on everything to ensure one medicine to help an organ isn’t hurting another.

During all of these doctor visits and all of these tests and procedures, Cole and I have a conversation on where he is going and what is going to happen. The more he knows, the better he does. He may not like it, in fact, certain things he hates and asks if someone else (usually his sister) can go and do these things instead. But at the end of the day, he does it and he’s a complete trooper about it. When Cole was little he didn’t even cry about these things, but as he’s gotten older and had a chance to live life at home, he has learned what life outside the hospital looks and feels like and he definitely prefers that. The sedated MRI was harder on me than him. Since birth anytime Cole has required anesthesia, his Dad and I go to the OR with him and hold him as they put him under. This time, due to Covid-19, they weren’t allowing parents in the OR. Instead, a fantastic nurse gave Cole a bubble gun and Cole was having a blast shooting all the staff with bubbles. He was so distracted I told the team to take him back now and he wouldn’t even know I was not there. The whole time in the waiting room as I stared at the progress screen, waiting for the color to change, which means Cole’s procedure is done and I can go back to the recovery room, I felt like a bad Mom. I know that the bubbles distracted him, but I also know the minute the bubbles stopped and they put the mask on him, he would be looking for his Mother and I wouldn’t be there.

After recovery, the anesthesiologist walked up to me and said the bubbles worked but as soon as we got to the OR, he turned around frantically looking for you. He had an open hand and his thumb on his chin. Yes, I told the guy, this is the sign for Mommy. As always, Cole was a trooper and did fantastic. We have a couple rules for the anesthesiologist and they always oblige. The IV needs to be in the foot, not the hands because Cole is deaf and uses ASL to communicate. My husband and I always need to be allowed to go in the recovery prior to Cole waking up, usually in recovery they wait to allow the parents in. Also, we are very familiar with what pain drugs work well and what work less well so we ensure the anesthesiologist use the right combination. Again, it’s critical to understand what you can and can’t control and be all over the controllables.

Fast forward to Tuesday August 4, 2020 and we will ensure Cole takes a shower and shampoo with a special antibacterial soap which will decrease the chance of infection during surgery. We will need to stop feeding Cole any Nourish (which is what he eats since he’s g-tube fed) at 1AM Wednesday August 5th, the day of his procedure. He will be allowed to have water until 5AM and after 5AM he will be NPO, which means he can have nothing to eat or drink. Mark is in the process of making the arrangements for the hotel because we will need to leave for Cincinnati Tuesday 8/4 to ensure we are able to check in for surgery at 7AM EST. His surgery 8/5 is scheduled for 9AM EST.