I found myself standing there, in the dark, dank silence of the garage, soaking in this moment…. she had her arms around my neck, her tiny head resting on my chest, her head below my chin, her legs draped over my arm, as I cradled her like I use to not so long ago. It was a quiet moment, a calm at the end of a stormy day. She was exhausted and so was I. It was just a moment, and I think we were both painfully aware of how incredibly rare and special that moment was. We were just still, deep breaths, strong grips, and silence.
It was only 3PM, the boys had not even gotten off of their bus yet, and here we were, 13 hours into the day from hell. We expected a rough day. We know that any day scheduled at the hospital will suck. We didn’t expect it to start at 4am, we didn’t expect the emergency room as an entrance. We didn’t expect the pain and anxiety.
Kailey is 8 years old. She is a tiny little bit of a girl. 30lbs and not even 3 feet tall. Kailey has a number of medical conditions, and I choose the term medically fragile when speaking of her, because above all else, the fact that her life is fragile is the most important fact I can stress. She is handicapped, she uses a wheelchair. She is a cardiac child, she has a mechanical mitral valve. She has a rare disorder called haywells syndrome, which amazingly enough is considered to be a random mutation. Any one of these things in and of itself would be bad enough, combine them together and well… you just don’t know what you get from day to day. We didn’t expect to see our girl celebrate her fifth birthday. She is now eight. At some point, we stopped projecting on the “but when” and decided to enjoy the “right now”. This way of life suits us well 99.9% of the time. Every .1% reality swoops in and gives us a really mean reality check.
Kailey was scheduled to have a cystoscope to check out her bladder at 11:30 on Wednesday. At 4Am on Wednesday, Kailey came hysterical into my room, in pain. Her bladder was full, it hurt. Because of her spina bifida, she has a mitroffanoff to access her bladder. We catheterize her through her belly to get the urine out. We have been having a hard time lately, thus the reason for the appointment later in the day. At this point, I was unable to get her cathed. We tried and tried. Ultimately we ended up at the Emergency room.
Once at the ER, we were greeted by the lovely woman who works behind the desk at the CHILDREN’s HOSPITAL, who, when pulling up my daughter’s name stated “you’re scheduled for day surgery, you need to go upstairs.”. Here is how this goes.
Me “Yes, she is scheduled for surgery at 11:30. It is 8am, she is in pain and needs seen RIGHT NOW. The doctor’s service said to bring her into the ER”
her “So you’re coming from the doctor’s office?”
Me <GLARE, look at watch, GLARE> “Uh, no, I’m coming from home. This is not a child with behavioral issues, this is a child in agony. You have to admit her to the ER”
her “Oh, okay hold on.” .. picks up phone, dials and speaks “Uh, I have a mother here who refuses to take her child to registration, she is scheduled for day surgery, what should I do with her?”
At this point I walked to a nurse, explained again that the child who I have with me, that is screaming in agony, and demanding somebody help her RIGHT NOW… is not a child with behavioral issues, but rather a child who has not urinated in over 12 hours, and that the surgeon told us to come to the ER. The nurse went to the idiot at the desk and told her to check us in. There was a debate between the two. I took Kailey and sat down while the battle of wills went on over there. I had nothing to contribute. My heart was broken. My will was shattered. My baby was in so much pain.
Finally another nurse called us over to take K’s weight, temp and allergies. She gave her her bracelets, then told us to have a seat. Dumb struck I said “huh?” she said pointing to the empty chairs “Go there and sit, somebody will come and get you”. Uh, oh… well, okay.
Now, this is where I should let you all know that at our usual children’s hospital (CHOA has FOUR hospitals in a very close area all specializing in different areas. We usually go to Egleston, because of their cardiac unit) sees us walk into the ER, and Kailey’s chart must be flagged, because we have never, ever EVER so much as sat in a waiting area there. EVER. We have signed in, and been escorted straight back. Seas part for Kailey at that hospital. They are NO JOKE. DO NOT PASS GO! No no, straight to a room with a nice lil’ pulse ox, and telemetry monitor on you.
Being told to have to sit in an ER waiting room, while standard for the whole wide world, is not standard for Kailey, ever, especially when she is in THIS MUCH PAIN! I have never ever seen her hurt like this.
My advocate self, my take no crap self, my “don’t screw with my baby” momma bear self…. BROKE! I don’t know what happened to me, I don’t know who I was. I was completely swallowed whole by the words my daughter had spewed at me about wishing she could just die. I was traumatized by the world around me and how completely out of body this whole thing seemed. I was not myself and I was not doing my thing. So, Kailey stepped in.
Kailey started to yell at ‘She who sat behind the desk’. When I say yell, I mean… this child turned UGLY. She screamed “Im going to slam my head into the floor and MAKE MYSELF BLEED! Do YOU HEAR ME? I’m going to make myself bleed, so somebody HAS to come out here and HELP ME!” OMG, my 8yr old just had her very own, “terms of endearment moment” for herself! GOOD FOR HER, and yet, how sad that she knows that this is a way she should have to get herself help?
At this point I texted my sister, who called the doctor, who sent a nurse, who got us into the ER. From there the frenzy was fast and furious. There was the attempt to calm the child with versed. They tried to put it up her nose. She spewed it back at them. Not happening. The urology fellow came down and tried to get her catheterized. She failed. It was clear that this bladder wasn’t going to get tapped while this kid was awake. So, the next step was get an IV going. Once that was done morphine was given. The savage beast was calmed. She pointed her finger in a circular motion and said “THAT… that medicine makes me sleepy AND it makes me not care! I LIKE THAT ONE!” Yes honey, me too. As soon as Kailey got her “not care” on, she was shuffled up to the OR floor. Notes were taken, doctors were in and out, I just stood, answering questions, holding her hand, and feeling both apprehensive and relieved. At least she didn’t hurt, but soon I would have to leave her. That moment, that horrible moment when you kiss your child goodbye before any surgery, was looming closer and closer, and with it, the old “what if” started to whisper like thunder in my soul.
Then we were home and there we stood, soaking in our quiet moment in the dark, dank garage. Both of us knowing. Both of us exhausted. A moment an 8 year old shouldn’t have to understand, but she does. A moment, like so many others we have had, but a harsh reminder… that I don’t take advantage of the normal moments nearly enough.
Kailey will have more surgery in the upcoming weeks. I will let you all know about it, as the time arrives.