You may have noticed I’ve been kind of MIA over the last week or so. It wasn’t intentional – but it’s been a whopper of a week.
First of all, I’d like to share a conversation that just took place between Kaleb and myself. As a prelude to this, Kaleb has been trying to understand the concepts of sons and daughters. For some reason he’s having a really difficult time grasping this, no matter how many times or ways Daddy and I explain it.
“Mommy, you can’t have sons because you’re a girl!”
“Kaleb, it doesn’t matter if I am a boy or a girl, I can still have sons.”
“But sons are boys and you are a girl!”
“Right. So, I am a daughter. And I have two sons.”
“No. You have three sons.”
“Daddy is home now. So you have three sons.”
“Daddy isn’t my son buddy. He’s my partner.”
“Nooo. Daddy is a boy, so you have three boys. So you have three sons.”
Anyway, Kaleb had his extended EEG Monday – Wednesday. I’m probably going to break this down into a couple of different posts, because it’s a lot to tell, and if I try to put it all down in one post I’ll never get it up.
I had been told I would receive a phone call around 9am Monday morning, letting us know what time to be at the hospital. We were going to one of the Children’s hospitals in Orlando, and it would take us around an hour or so to get there, depending on traffic. By 10am I hadn’t heard anything and opted to call. Turns out, the beds were all full and they were waiting for someone to be discharged – I was assured that a couple of children were being discharged, it was just a matter of what time they would actually be leaving. By 1pm I was frustrated. Kaleb had been in his button down jammies (you don’t even want to know what a nightmare those were to find) all day, and had been anxiously following me around the house with his backpack asking if it was time to leave, while I paced around the house staring at the phone (productive, right?).
I called back, was given the same line as before, and went back to wearing a track in the floor (I’m genuinely impressed that Daddy hadn’t tied me to a chair at this point – the pacing was probably driving him insane). We had everything packed. And by everything I mean everything. I wouldn’t have been surprised to see the kitchen sink. Tablet, laptop, kindle, phone, ipod, chargers, clothes, toys, books, games, paper and markers, dvds, food, etc… there was a lot of stuff. Most certainly more than we actually needed. But you can never be too prepared with Kaleb (and in retrospect I’m glad I packed most of it).
By 5pm I was pulling my hair out. Now we’re both wondering if it’s even going to happen, or if they’re going to put it off another day. If they do that, I may as well pop cotton in my ears and brace for the screaming. Kaleb was ready. He was prepared, he understood where we were going and what was going to happen, and he wasn’t fighting me. There was no guarantee this would be the case if we pushed it off a day. And then, just as I was getting ready to call and probably make someone very irritated, the phone rang. We’re good to go. Finally!!
Throw the bags in the car, say our goodbyes to Daddy, Mason, and Milo, and off we go.
By 7pm we were lugging our bags across the hospital, ready to get checked in as quickly as possible. Of course, it would have helped if I hadn’t walked right past registration – thus having to turn around and drag our stuff back to the other side of the hospital. By 8pm we were in Kaleb’s room. He was agitated because it was past “quiet time” (aka bed time), and “We are supposed to have quiet time at home!” I had him flipping through the DVD book to try to distract him – which was working – until the nurse came in to get his vitals.
For some reason I have yet to figure out, both of the boys HATE the little red light being put on their fingers. They don’t mind the blood pressure cuff, they don’t mind the stethoscope, or the thermometer (as long as it’s under the arm or on the forehead), but they hate that little red light.
On top of all the other nonsense we brought, Kaleb also brought a Lego bin filled with random toys (the stethoscope from his Doc McStuffins kit, a Mr. Potato Head, a beaded necklace, etc…). He was quite upset with the nurse for the little red light being stuck on his index finger, and as a result, demanded she hold still so he could check her blood pressure. She was a great sport, and acted like the perfect patient for the Monster Man. She went and grabbed him some milk – another problem. The milk was in little cartons like at school. We aren’t at school, we’re at the hospital. So now he refuses to drink the milk. Again, I play the distract and calm game, and he seems to be doing okay. By 9pm the tech still hadn’t come in to hook him up and Mommy was starting to get agitated. The kid was exhausted, overwhelmed, and the later it got, the more difficult he was going to be.
Finally, around 9:30 the tech comes in. And she’s wearing a face mask. Kaleb freaks out – “She doesn’t have a mouth!” – oooh great. The tech explains that she has a runny nose, but Kaleb isn’t buying it. She doesn’t have a mouth and that’s that. She’s not getting anywhere near him. I know from his previous EEGs that the tech will need a few minutes to set everything up, so I jump back into distract and calm mode. When a voice started asking me questions from the ceiling I just about had a little heart attack. Forgot for a minute that the entire stay was being monitored and recorded by mystery people in the ceiling. Kinda also forgot to mention that to Kaleb – so I have to answer ghost guy’s questions while still playing distract and calm.
Fifteen minutes or so pass by and the tech is ready, but before we get started, she walks me through what she’s going to do. Once again, I’m expecting this to be routine. Put gel on his head, put electrode on gel, cover in gauze square, repeat – wrap head like mummy.
Once more I’m surprised. She tells me there’s a new skin glue they use.
She applies the gel, then the electrode, then she dips the little gauze square in glue, puts it on the electrode, and then uses what looks like a little mini air compressor to blow the glue dry.
Oh, S**t. This isn’t gonna be good.
And it wasn’t.
It was a complete nightmare. Not as bad as the time we had to have the MRI and they tried to sedate him – but bad nonetheless. He was fine with the gel. Fine with the electrode. Not fine with the cold wet glue. Even more not fine with the air. Really, really not fine with her blowing the glue dry with her little air gun. By the time she was halfway done I was sitting on the bed, my legs across Kaleb’s chest – holding down his right wrist between my ankles, holding his left wrist in my hand, and holding his head with the other hand. It’s taking most of my body strength just to keep him on the bed – it was pretty much impossible to keep him still.
He was worked into such a state that there was no talking to him. No reasoning with him. No explaining that the more he struggled the longer it was taking. Not happening. I had to reposition myself a time or two – to get one of my legs under his, keeping his butt from scooting down the bed any further; the other leg on top of his to keep him from kicking me in the face, arm still pinned between my ankles… and back to the original position again.
There was no keeping this kid still. And he was screaming. Between great, heaving, sobs, he was screaming.
“No! Stop! Don’t break me! Stop breaking me! I said stop! X! I said X! That means you have to stop! No! Don’t do that! Mommy make the lady stop! You’re supposed to be nice to me!”
At this point I’m just repeating that he’ll be okay over and over again. What else can I say? He’s not okay – not right now – and I’m not going to try and tell him he is. But he will be. We’ll be done soon. In the meantime, my heart is breaking. I asked her how many more she had – 12. Okay, start counting.
Just 12 more kid, and you’re done. Just 12 more. Okay, okay, look – only 11 now. See? Only 11. I know 11 is a lot – but it’s less than 12.
With five left to go he starts screaming that he has to pee. Oh no, seriously? You can’t get up right now! Just 5 more! Now he’s fighting with renewed vigor. Twisting and squirming and screaming. By this point the tech is going as fast as humanly possible (which was evident two days later when I was trying to wash the glue out of his hair and the entire right side of his head was basically plastered in it). Finally, we’re done. Kaleb is shaking like a leaf, and clinging to me for all he’s worth. She cleans up all of her equipment, puts a little mesh sock looking thing on his head, and puts the bed back to it’s original position.
I ask Kaleb if he wants to go potty – nope. Not a chance. He is not moving. The tech explains that the cords will reach to the bathroom, but tells me to try and keep him from moving in and out of bed too much to lower the risk of him yanking out any of the leads. I don’t think that’s going to be a problem. She goes to leave, stops, turns around, and thanks me. I must have looked as baffled as I felt. She elaborated to say she’s not stranger to being yelled at by parents when the kids get that upset, and she appreciated my help with keeping Kaleb as still as I could. I was a little stunned.
After she left, Kaleb finally fell asleep, still shaking like a leaf.
What she said had me thinking though. After four years of one test, evaluation, meltdown, nightmare adventure after another – I definitely see things a bit differently. She was just doing her job. It’s not her fault Kaleb reacted the way he did – that’s just him. But had that happened three or four years ago – I’d have lost it. Because I would have needed someone to blame. I would have needed to point a finger and say “this is your fault”, instead of being able to accept that it was an upsetting situation and Kaleb was going to react how he was going to react regardless of who was applying the glue. The same way he’d have a giant meltdown if his PopTart broke, or his tower of blocks fell down.
The realization that I didn’t feel that need – the need to blame his pain on someone else – made me feel a whole lot stronger than I have in a long time. I’ve always loved and accepted Kaleb for who he is – but that doesn’t mean I haven’t been as willing as the next person to point fingers. Especially in situations where I feel like I’m failing him, and am afraid the fingers should be pointed at me. It’s not a pretty flaw, but it’s a real real one. Recognizing in a tough situation that I didn’t feel the need to blame anyone, especially myself, was pretty huge.
So, anyway. I’ll write about Tuesday tomorrow. For now I’ve got laundry to do, Mason’s room looks like it was struck by the Toys ‘R’ Us Tornado, and I have to go buy our Easter supplies so we can start our Spring Break festivities tonight!