Miss K woke up cranky today, she did not want to be up, she wanted to sleep. I can't say that I blame her, I wanted to stay in bed as well ;). She couldn't eat solid foods after 3:00am, we kept her up the night before until 10:30pm trying to get her to eat, eat, eat. Truth is she's not a snacker, she prefers 3 meals and that's it, so getting her to eat until 10:30 was near impossible. She was allowed clear fluids and Jell-O until 9:00am so her breakfast was Jell-O jigglers and apple juice...it didn't go over well at all, not that she was mad at what I was feeding her, just that she is not a breakfast kind of kid, she never eats more than a tiny bit each morning and getting that much in her is tough. She had a few tiny bites of the Jell-O then played with it, can't blame her there either, Jell-O jigglers are fun to play with ;).
We arrived at Primary Children's Hospital right on time. Miss K was just great with the pulse ox and the blood pressure cuff, she's used to these and didn't mind them at all. The nurse wanted to use an under the arm thermometer, Miss K wasn't having that though! The nurse suggested under the tongue instead and Miss K opened right up and allowed that for some odd reason. Next comes the IV...Miss K knows exactly what those are, she knew immediately what we were doing the second we tried "assuming the position", so to speak. A lot of violent kicking and screaming, it took 3 of us to hold her, I had her chest to chest with me, both of her arms tucked under each of mine with one nurse behind me finding the vein, one in front of me holding Miss K's arm, me squeezing as tight as I dared and Daddy holding her legs down because, darn, those little legs are strong! She was using them to push away from us all and doing a pretty darn good job of it! So much struggling commenced that it took almost 10 minutes just to get her hand properly prepped and the vein raised, then another 5 or more minutes getting the IV in, and because she was already worked up and ticked off at us all she kept screaming and struggling through the tape being placed as well. Once we were done they brought a treasure chest and let her choose a prize, the only girl toddler friendly prize in there was a Cinderella puzzle, thank heavens she was thrilled with it...Note to self: find some great little girl toys and donate them to PCH for their prize boxes...
IV in and ready and we're taken back for the MRI. They had me snuggle Miss K while they pushed the sedation medication through her IV, they had to double check her charts and make sure to use a certain medication though because their usual medication interacts very badly with Digoxin. Miss K fought the sedation hard, once we thought she was out she started thrashing around, we got her settled and assumed she would be fine and then I realized there was a safety pin in her pants (yes, she's tiny, every pair of pants she has that isn't adjustable waist must be safety pinned, or taken in with sewing, so they don't fall off of her non existent hips and bottom), I majorly disturbed her removing the pin from under her back :(, she wouldn't calm again after that so the nurse had to push another medication called Versed, this one knocked her out in seconds and she didn't even twitch. The nurse assured us Miss K was completely fine, she would watch her 100% of the time, but the MRI was going to take 30 minutes or more and after that we would be stuck in recovery with Miss K for another 2 hours so she pretty much forced us out of there and commanded we go get some lunch so we'd be better ready for the long wait later. I very reluctantly left my baby in their, hopefully, very capable hands and we ran down to the cafeteria for some food...wow, can I just say "flood of memories"?! I almost couldn't handle that cafeteria and it's food today, every terrible memory from 3 years ago came back to haunt me down there.
We made it back into the MRI recovery room just as they had gotten Miss K settled in there. They wanted her to sleep at least 2 hours straight to make coming out of the sedation a bit more pleasant. Lucky for all of us it was Miss K's normal naptime at that point and she was more than happy to stay asleep, in fact she slept soundly without a stir while the little girl right next to us, her bed was touching my shoulder, was screaming at the top of her lungs and putting up a huge fuss about waking up from her sedation, it was so bad the nurse was practically begging the parents to take the little girl home, she was sure their child was just fine and would be better in familiar surroundings but the parents were not so sure and just stuck around, I know everyone in there was very relieved when they finally left after over an hour of listening to that sweet girl scream.
Miss K slept the full 2 hours just great, and amazingly she woke up quite easily and very happy, in fact she was quite goofy and out of her wits and it was a bit entertaining as well as unsettling, it's not fun for a mom to see her 3 year old act so out of sorts, even if she's happy doing it. Miss K did great, she ate a whole popsicle on her own, this is not normal at all, she hates cold things and normally won't touch a popsicle. She also ate cereal for the nurse and drank juice just great. We were released quite quickly with our only instruction being never to leave her alone in the next 24 hours and never to leave her with any siblings or sitters for 24 hours.
Miss K started her screaming and thrashing as we got into the car, she did this for about 20 minutes, constant screaming and thrashing about in her carseat, we couldn't calm her no matter what we did. But after 20 minutes she decided to eat more cereal and fell asleep while chewing (it's OK, I watched her close, she did not choke), she slept the rest of the way home. Since getting home she has been very unbalanced, she can't walk straight no matter how hard she tries, and she's still acting quite loopy, doing silly things and acting very crazy. She's also very visibly tired and should sleep easily tonight. Otherwise she's doing fine, heart rate has stayed perfect from beginning to now. We did have another bad parent moment today and completely forgot to give her her afternoon Propranolol :(, but I don't feel it's a bad thing with all the sedation medications in her that are slowing her heart rate.
Before results I will update a tiny bit about her past week. Last Wednesday Miss K started taking Cyproheptadine for her migraines. They had us start out at 1/2 dose for a week to get her body used to it then we went up to a full dose, in the very short week of just 1/2 a dose I already noticed a HUGE improvement in Miss K. She only complained of her head hurting just 2 days and both times were first thing in the morning before even getting out of bed so I'm not sure it was even migraines but rather waking up making her feel a bit off, after breakfast each day she never complained of her head again. Miss K's comprehension and speech has changed quite a bit in the past week as well, she's a lot more attentive and seems to understand more and she is a lot happier and a lot more active. I feel terrible realizing that her headaches were more than I even could comprehend, from the way she acts they must have been pretty constant and pretty debilitating :(. I'm still leery about the medication, I really don't like giving my baby girl medications and adding one more makes me nervous, but the outcome already has me thinking this is a really good thing.
Our Pediatric Neurologist is just as awesome as our Electro Physiologist! She received the MRI scan within just a few hours of it happening and she called me barely an hour after we left the hospital...frustrating enough my phone decided not to ring at that moment and I missed her call, we were left stressing over results until after 5:00pm, 2 hours later, before she finally had another moment to call me back. The MRI showed no reason for the migraines and no reason for seizures, also no seizure activity at all. Both these things are GREAT news and really what we wanted to hear...but now we're left to wonder what in the world is causing Miss K's migraines? Also the MRI revealed a very interesting find, not life threatening and not debilitating in any way present or future, just interesting, as the Neurologist says. Miss K has an old Stroke in her brain, apparently it is very old, the Neurologist says it happened when Miss K was a tiny baby and that she very strongly feels it happened during Miss K's 48 hour long SVT episode that we were unable to break during her PICU stay. It makes sense, I can't imagine that episode NOT causing some sort of damage in her little body. This does bother me, a lot more than I've let on thus far, a Stroke is not something you want to hear your child has had for whatever reason. But the Neurologist was very reassuring that it is not anything to worry about.
And there we have it. Miss K is having migraines, it's apparent she really is, after seeing such great results from her migraine medication. But there is no apparent cause for the migraines, we're just left to wonder and treat.
Thank you, everyone, for you love and support and prayers today, they were most definitely felt. Somehow I was a lot more calm than I thought I ever could be today, I strongly feel it was all your prayers, thank you.