I am going to steal a skit from SNL for this post.
Really with Amy.
Today we drove over to Bloomington for Larkin’s MRI. Carle couldn’t get her in until April 1st and we see her pediatric orthopedic surgeon this Wednesday. We needed to get in sooner so we chose to go to Bromenn. We left the house around 10 to get there at 11 as they asked. I am quite familiar Bromenn since I grew up not far from Bloomington and my sister has had a few procedures there. They have a beautiful atrium with a reception desk and incredible volunteers who ask right away if they can help.
Andy drops Larkin and I off at the front door and we go inside to wait for him. Thus begins my day of Really?
She is dressed in jammies but they are pink and green. Her blanket is pink and green. PINK and green. “is he ok?” “he looks like he doesn’t feel good” REALLY? He? Because most people that walk in the door here have their male children dressed in pink? Really? And she feels just fine thanks. “but her cheeks are so red” Really? It’s 20 degrees outside and you can clearly see that she has been laying on my chest. Really? You think she might be reddish? Really?
I stand there making conversation with the lady at the reception desk. I tell her that while Larkin feels fine, we are there for an MRI procedure. Andy comes in and because I am the type of parent that always pre-registers, asks for precise directions and writes it down, we head for the 4th floor as directed.
The elevators that I have seen more then once during my visits there, do not access the fourth floor per the sign on the wall. Hmmm so we ask a volunteer, who flags down yet another volunteer, and the gentleman walks us through a maze, that even the most steroid driven rat couldn’t find his way through, up to the 4th floor.
We check in at the nurses desk whereupon they ask if we stopped at registration and checked in. Really? You mean the same lady who talked with me about why we were there? The same lady who should have been asking me to register? Really? The volunteer waits because he wants to walk us back through the rat maze. Apparently there is some type of cheesy treat in this volunteering gig. The nurse says that she will call down and won’t make us go all the way back. Really? You think? We do want to walk the 2.3 miles back to the desk. Really.
We go to Larkin’s room and settle in. Weight, length, medications she is currently taking. We are getting all of this done when another nurse pops up and say’s that one of us does indeed have to track back down the mountain maze to the front desk to sign the consent forms. Really? You don’t have enough consent forms on every damn floor of this hospital? Really? So I send Andy back so I can ensure Larkin’s health history is filled out. I am quiet. I am patient. Really.
Andy leaves and I begin to fill out a 3 page consent form. Really? I sent him away for another consent form and I am filling out another one? Really? I check 40 million little boxes to ensure that she does not nor has she ever had any shrapnel or metal parts inside her body. Really? Is our population so friggin stupid that we need to COA so badly that we have to break down the same question 30 different ways? Really? Don’t answer that…I know….really. Andy returns and we get on with it. I am quiet. I am patient. Really.
One of my most favorite questions during the input phase with the nurse was this “do you feel safe in your home?” Really? Do you think Larkin is going to say “no” or “my mom is dangerous with her typing” or “you should be careful what you say cause my mom is going to post it on the Internet tonight” Really? Andy answered that he doesn’t which I must admit was correct. really.
We move on and here is the single most important question is asked. What is her diet? As most of you already know, Larkin is on a very restrictive diet. She is on this for seizure control. It is working and we have had clinical control for about 6 months. We explain that Larkin is to be given NOTHING by mouth. NOTHING. We control everything that she eats. Really.
We wait. 11:00 be here. 12:00 procedure. 12:45 the Anesthesiologist shows up. Another ologist. Really. He and I speak outside the room and I fill him in on Larkin. He writes it all down. Then he looks at me and smiles and asks “what is your background, are you in the medical field?” Really? I have 2 year old girl with massive health issues beyond the norm and you ask me my background? Really? As if I haven’t taken copious notes, read everything I can get my hands on, remember her every moment of near death, broken down sobbing, helped my husband in return when he has, lived the nightmare, crawled, begged and pleaded with God to help this little girl, Really? You think I wouldn’t be able to help you with 7 questions about putting her to sleep? Really? Just better wake her ass up buddy. That is all I’m worried about. Really.
We wait. They come to the room at 1:45. No shit. 1:45. Really. They have asked a 2yr old to not eat past 7:30 this morning, and now they come to give her some “loopy juice” to help her prior to the procedure. Really? I explained that this “juice” only enhances my daughters genetic gift from her father, of being able to party like a drunk frat boy on unofficial St Patrick’s day. (google it) Really. Yeah whatever momologist. As if you know. Really? So we shoot her up…or rather I do. My little girl is ready to ROCK.
We leave that wing to go thru another maze. This time with 2 nurses who explain to me that Larkin is going to need a set of x-rays to ensure that her neck is stable for the anesthetics. Really? I asked that same question last week. Do you need these x-rays? “no just bring her in” Really? I knew in my heart that the doc was going to want those once he saw that she has Down syndrome.
X-ray it is. I hold her. I am quiet. I am patient. I get through it. So does Larkin. I know that they are doing it wrong. I know that the doc wants an x-ray of her neck flexed back and forward. But I keep quiet and we move back to the waiting room. We wait. Really.
They come back to get us explaining through many apologies that the doc wants an (and they start speaking to me realllly slow so that I understand this important, “doctor part”) x-ray of her neck in a flexed position. Really? Really? Who’da thunk?
We do 2 more x-rays. I am quiet. I am patient. We get through it. Really.
Now at Carle when they do her MRI, we wait in a room next to the MRI. They come get us and we sit with her while she wakes up. We are always with Larkin except for the actual giant magnet part. They even have me with her as they begin to put her to sleep. It’s what I consider a highlight to Carle. We are involved with her and are made to feel comfortable to the enth degree. She wakes up to us and we feed her. All children are very disoriented after being given anesthesia. It is crucial to have a parent or care giver they know with them.
A nurse that has talked with us twice, comes in to the waiting area. She is going back to the room. I give 2 instructions. IMPORTANT instructions. 1. I need 2 copies of the MRI. 2. DO NOT and I repeat DO NOT give this child any dextrose. NONE. I made her repeat it back to me. Really. Nothing in her IV. It ruins the Ketosis and we are ruined in the diet. really.
Another nurse comes in the meantime and leads us to the MRI and at the door to the room she says “this is where we leave you and you give her to me” to which I reply, “DO NOT GIVE HER ANY DEXTROSE” of any kind. Nothing. She can’t have any sugars.” Kisses hugs and we let go. *sigh* It’s now 2:30. Really.
We grab some lunch. We are exhausted. We are two parents just trying to find a quiet place to relax, eat lunch and chat. Two parents that are worried sick inside but are still willing to fake it to the outside world. We enter the cafeteria. I am carrying her little gown, her little blanket so it is somewhat obvious that we are waiting for a wee one. The cafeteria is quiet because normal people apparently get to eat prior to 2:30. Really? Is that what they do because everyone else has assumed that my 2 yr old should not eat for what has turned into over 7 hours. Really?
I find a table in the giant room. Towards the side. It’s an empty room. Giant and Empty being the operative words. We sit and decompress. In walks 3 student nurses. We know what those look like. They chose to sit at the set of tables directly behind us. Really. In walks 5 more and they sit. I am tensing up but decide that it’s not worth it to move and maybe it’ll be fine. Really. Then in walks an instructor who is rather large. I am not passing any judgement here. I am the LAST person on earth who does that. However apparently the only chair she can sit in, is directly behind me. Really. Instead of accessing the situation, clearly seeing visible cues but apparently we weren’t wearing our “parents put thru the wringer” sign. She in a very loud voice asks “Everyone please get out your worksheets that you did on patient rounds today and we will begin” Really? You can’t find another damn table in this entire GIANT EMPTY room except right behind us? Really? And she proceeds to hold her debriefing with her students as I pull my chair in closer to our table to stop her from slamming into the back. I am quiet. I am patient. Really.
We head back up to Larkin’s room to wait. We share the elevator with a staff person taking food up to the 2nd floor. We hit the 4th floor and she asks “going to see a baby?” with a giant grin. Andy and I both smile and nod and say that we left our baby to get an MRI and we are going to her room. Her grin disappears. Really? It never fails to amaze me that people, ESPECIALLY people who work in a hospital, don’t realize that often times baby floors are painful. Babies are not supposed to be sick. They are not supposed to spend the majority of their lives in the hospital but alas some do. Really. So heading up to ped’s is not and never has been in our book, something we grin about. Really. But she was nice and I need to quit being a bitch. really.
We wait. I read. Andy watches sitcoms. I make fresh coffee in the nurses station. We make phone calls. We check email. We try and hide the fact that we are watching the clock tick. I am quiet. I am patient. Really.
Larkin was supposed to be back at 4. But we were quiet. We were patient. The nurse comes in a cheerful tone, announces that Larkin is finished! She is awake and doing well! She is drinking Pedialite!!
Now we are very much NOT quiet and very much NOT patient. WHAT?? Really? What part of NO dextrose did they not understand? WHO THE HELL PUT SOMETHING INTO MY CHILDS MOUTH WITHOUT ASKING?? Did they give it to her a glass or a bottle?? I am ENRAGED. But I am a quiet enraged. Nothing gets accomplished when you lose it and yell. I have to calm Andy down. He is ready to scream and go off on this nurse. Really.
I head out to the nurses station and I calmly explain to both sitting there exactly what has happened. Exactly why it’s horrible for us to hear. They feel terrible. Andy is back in the room because he is going to kill someone if I don’t keep him contained. As I am standing there, the elevator door opens. Now here is where it get’s good. I am going to break it down for you.
I see a nurse step off the elevator. She is all of 5′4. Larkin is 28 lbs, 36 inches long and is completely in melt down due to the disorientation of the anaesthetic. She is being carried, wrapped in a blanket, wearing just a diaper with an IV stuck into her hand. This nurse also has Larkin’s IV bag, a folder of documents, and the bottle of Pedialite.
Really? It’s a damn hospital and you couldn’t find a gurney? Really? You carried my daughter in this condition through a hospital maze up 2 floors. REALLY? Not a single bed to bring her up on? Really?
You had to carry her by yourself? Really? You couldn’t find one more body to help you? Really? I know where there are about 15 student nurses who could help. Really.
After telling us that she only had 1 oz of the Pedialite you show up with the bottle which clearly shows you gave her almost 3 oz? Really? You have been told over the phone to STOP and not give her anymore yet you continued carrying her and all that mess with the bottle? REALLY?? Really?
So I am quiet. I am patient. I sit and console my daughter. I keep Andy from hurting someone. I hold her tight and feed her. The nurse comes in to check on her and I calmly say. “I’m going to need to speak with someone so whomever you decide is best, please have them come to our room”
I quietly, calmly explained my issues. I quietly, calmly accepted their apologies and we left. Really.
We all learned something today. I know they will go back and hopefully restructure their MRI procedures with children. Hopefully they will understand what they did to two parents and a little girl. Andy and I from here on out will never ever leave her in a situation we don’t fully trust. Really. I listen to my gut and speak out but I trusted these people. I should have listened to my gut and written on her arms in red ink – GIVE NOTHING BY MOUTH TO THIS CHILD – and don’t think we won’t do it next time. Really.
The ink will wash off her arm when I do it. I take copious notes. I remember. So this Momologist will take that extra step and ensure that she is protected when she is asleep and we are kept from her. Really.
We are tired. Off to bed. Kiss and hug your’s tighter. Really.