I was overwhelmed at the response to last week’s emotional outpouring of my thoughts regarding being/becoming a mom to a child with special needs. It felt cathartic to write some of that stuff – stuff that I usually keep stuffed in, but comes out occasionally. I decided maybe I should try to get some more of it out. If it helps other moms in their journey, then I WANT to get it out. I’ve “met” some amazing new people this week because of that post, and I hope that those friendships continue to develop, that that post continues to touch people’s hearts. So here you go – more of the stuff I stuff inside. As one of those friends goes in for some pretty major surgery this week, I thought I’d talk a little about what you will learn when your baby goes to surgery.
You think you know what it’s like, because you have seen it on TV before.
Or because you have handed your baby off for a 20 minute procedure involving putting teeny tubes in their ears.
Or because your cousin’s babysitter’s dog-walker’s son once had to have surgery and you heard all about that.
But nothing will prepare you for the first time (or any time) you have to hand off your baby to a team of gowned up doctors and nurses and go wait in “family surgery waiting area”.
Here is what you will need to know:
You will not be able to sign the consent forms. You know how to write your name, and you can see the line on the paper, and your hand FEELs like it should be responding to the command to “sign here please”…but it won’t. You will see the surgery listed out in cold medical terms at the top of the sheet, and the cute little teenager who claims to be a “resident doctor” is telling you that it just details what is going on and some of the common risks and they need you to sign it as consent and permission to perform that surgery – but still, your hand won’t work. You cannot do it. You will have a mental block against being the one who signs the paper that made it ok to make a hole in your baby’s stomach/chest/neck/head. You will not be able to be the one who says – yes, it is ok for you to put my baby through all of this pain while I sit out here thinking of anything else but what is going on in there. Your husband will notice the drops of your tears on the paper and your hand shaking above that paper and he will take it from you and sign his name instead. He will know without you saying that no matter what that paper ever says, you are unable to sign it.
You will learn that nothing is ever set in stone until the anesthesiologist comes in. You will learn that these smartest of the smart doctors are the ones who REALLY hold your child’s life in their hands. You will learn that they speak a whole other language from what the surgeon speaks, and you will have to learn this language. It involves a lot of big words like “malignant hyperthermia” and “sevoflurane”, and one day you will actually find yourself having a conversation with an anesthesiologist regarding the use of “TIVA vs propofol for induction” and you will wonder what happened to your real life. You beg and hope and plead that this doctor and his team really does know the best mixture of medications for your child whose body likes to do crazy things when its under GA (general anesthesia), but ultimately, you will learn that you have to trust. Just trust. You will also learn that nobody believes you about your child’s extreme tolerance of the “happy juice” medicine until they are muttering under their breaths about how this is enough to make a horse fall over giggling pushing in their fifth vial of medicine and you will have a brief moment of smugness at knowing more than an anesthesiologist.
You will learn that you don’t really want to walk back to the OR with your baby. It is better to leave them waving happily in the crib while the nurses wheel her down the hallway. You will walk out that door with a firm determination to not look back and to not let the tears fall, not yet, because you will not leave her with a view of a crying mommy. You will be strong. You will force your brain to think about food because you will have likely been “NPO” (nothing to eat) along with your child, and you have 4 texts on your phone asking if you’ve eaten yet (from your mother who will always be your mother and worried about you eating, and from your friends who know your routine) and your husband (if he is there, cause sometimes he can’t be) – but still you hear the voices telling you to go eat. So you do. Because you know you will be in a bad place without something in your stomach, and because it kills some time that you don’t have to be in “family surgical waiting area”.
You will go and get your food and you will bring it back to the area they have set aside for the families waiting for their children in surgery. You will realize this area is it’s own little microcosm of society. Strange things happen in that waiting area. People wait. And waiting does weird things to people. People get good news and people get bad news and their reactions are palpable. Some people bring in entire camps of people to wait with them. And others huddle in their coats not wanting to talk to or look at anyone else. Some people raid the vending machines like a zombie apocalypse has just occurred and you will want to yell at them because they took the last five packs of plain m&m’s and all you really effin wanted was a pack of stupid plain m&m’s. Some people feel the need to call every. single. person. in their contact list and loudly explain to them every. single. detail. of what their child’s surgery is going to entail. You will learn to spot those people from a mile away and set up your own camp far far away. you will also learn to bring headphones to block out this information.
You will learn that you can pack a hundred million jillion things to do to entertain yourself or occupy your mind but you will not be able to focus on a thing. your brain will still be stuck willing the anesthesiologist to please do a good job and praying with every fiber of your being for the surgeon to do a good job and for your baby to be sleeping peacefully and having good drug induced dreams. People will text you and want updates and you won’t have any info to update them with and you will feel like throwing your phone against the wall because you’d like an effing update too but the nurse hasn’t called your name yet. your really good friends will know that you want to have funny stories texted to you during the wait and you will also get random insane texts from your random insane friends, and you will crack a smile, not so much at their goofy jokes, but at the fact that your friends know you and love you and know what you need.
you will learn that the surgeon will give you an estimate of time not unlike the cable guy. “It should take me between 45 minutes and 4 hours to complete my work, and then of course getting her woken up and settled in the PACU.” And you want to ask if he can estimate any closer between that range, but you know it’s futile anyways because your child ROUTINELY will take double whatever time they estimate. It’s just who she is.
You will learn that you hate knowing which chairs are the best in this family waiting room. No one should spend enough time in the family surgical waiting area to have a “favorite” chair/couch/tv. You will again wonder how you ended up here. And you will have to go play a stupid game like “angry birds” in order to get your brain off that crazy track of thinking. And you will find yourself unnervingly frustrated at the stupid pigs in the game that just won’t be crushed by the stupid falling logs. You won’t talk a whole lot in the waiting area. Even if you have someone with you, which isn’t always, you won’t feel like talking. in the same way that your hand stopped working while trying to sign the papers, your mouth feels like it won’t work. Or if it does that only swear words will come out. so you keep it shut.
And you will learn that JUST when you start to feel desperate for information, that is when they will call you “parents of Kendall….. parents of Kendall…the doctor will see you in consultation B”. And you will breathe a huge sigh of relief and run to the consultation room to hear how your child has done.
She is ok, it all went ok. You breathe again. You cannot wait to see her again. You scrub your hands with the antibacterial sanitizer and you go to the pacu area and you can hear her/smell her/sense her from the doorway before the nurse has even pointed you in the right direction and you are there, at her bedside, holding her hand, letting the tears come finally because she’s all done and she’s in pain and she can’t even open her eyes against all that her little body is fighting and you want to scoop her up and hold her but you know that would be more painful and so you let her sleep and you put your face next to hers and tell her “mommy’s here i’m right here you did such a good job baby girl mommy loves you”.
and her fingers will curl around yours like they have done since she was first born and she will know you are there and she will relax because she knows that if you are there then everything will be ok. And you promise her that you will make it all be ok because you are her mommy and that is your job.
and that is what you will learn about surgery.
You will be ok through this though. Because you always are.