Well doesn’t the tittle explain what I’m doing? 10 minutes into the trip down here I realized I forgot to bring a to go cup with me, I despise drinking from disposable cups, it takes me hours to finally manage to drink an entire coffee, and I’m clumsy so really a good quality insulated travel mug with a well sealing lid is my only option. I made do yesterday but this morning I wandered down to the Starbucks a couple blocks from Easter Seals House to pick up a coffee and a decent travel mug. Since I’m here and I have coffee and there are tables and everything I figured I might as well pull out my iPad and keyboard and get to updating everyone on the events of yesterday.
We woke up Princess at 6:45 so she could take her meds and have some apple juice before her fasting began at 7:00. at 8:30 we loaded Princess and Buttons into the double stroller and headed to the hospital. after a short wait we were taken into daycare surgery where they almost cancelled her tests because of her chronic vomiting and lose bowels that are caused by the coctail of meds we pump into her tiny body everyday. Thankfully I managed to get them to realize that not being able to have the tests after having stomach upset would mean we could never get the tests done and they went forward. She was so brave, didn’t even flinch when the IV went in and was out within moments. I don’t like seeing her like that, it’s not like sleeping, her eyes rolled back and sayed a little open but she was completely out. I will admit I almost lost it, and I’m really glad she picked me to go with her instead of Papa Bear because I don’t think he would have been able to hold it together. It took longer than they expected for her to start waking up in recovery so I was pacing the floor in full blown mama anxiety by the time they came to get me. Princess woke up and had no pain which was awesome, she was groggy and a little grumpy and disorientated but all in all it went really well. We left the hospital arund 12:30 and went back to the house.
The no pain from the spinal tap thing didn’t last long I’m afraid, Princess was walking from the bed to the table to have something to eat when she decided she should start jumping, it was like a train wreck in slow motion as I realized what she was doing and tried to stop her it was too late. She sopped said “oh no that wasn’t good” and collapsed. She has been in a lot of pain ever since. We go back to the hospital today to see her Neuro and get the preliminary test results so if she is still not able to stand up we will have to get it looked at.
The Neuro should have most of the tests back by now, the preliminary MRI report that will tell us if there was anything big and obvious seen, the cerebral spinal fluid glucose test which will tell us if she has any sort of meningitis (highly unlikely)and more importantly if her body is properly transferring glucose to her brain. If there is a problem with the glucose transfer she will likely need to be on a ketogenic or crazy strict Atkins type diet so her brain can get ketones instead of glucose, shitty but doable. I’m really trying hard not to google every possible cause and get myself all worked up when I know we will ave the results in just a few hours but I’m a control freak google addict so you can imagine how well that is working for me.
I took Buttons to Metro town with a friend of mine last night and we hit build a bear, $120 later we walked out with pony for her and Princess, a bear for Monkey and a spike the dragon and pair of roller skates because i couldn’t resist. If Princess is feeling up to it today we will go to the science centre or shopping after her appointment so she gets to see something other than the hospital and the inside of our room. I hope her back is better because if it’s not the bus ride home is going to suck! Nearly 28 years after I had a spinal tap following a febrile seizure in a swimming pool down in the states and I can still very vividly remember how much it hurt to walk and how horrible every bump in the road was. Maybe we will have the bus to ourselves again on the way back and she can lay in the bed instead of having to sit in a seat. We will see.
Well I’ve been doing this writing in public thing long enough I think and I’m starting to get self conscience about the fact that I likely look like just as much of a douche as the guy in the corner with the laptop does so I’m going to head back to the house and see if the kids and papa bear are up yet.
I can’t sleep, I’m tired and I know we have a big busy day tomorrow but I can’t turn my brain off. I’e held it together better than everyone else until this point and now all the fear and anxiety that I should have been dealing with for the last two weeks is hitting me now. I’m sitting by myself in the 3rd floor common area of Easter Seals house, alone in the dark. I know every single other person in this place is here with a sick kid and it’s making me think about all the things that might be causing Princess’s seizures. She has started getting strong headaches along with sever photosensitivity and that scares me too. On solstice when we welcomed the new sun and choose something to leave behind from the previous year she put her head down and whispered “seizure activity”. Yesterday she told me with tears in her eyes that she just wants to be like everyone else, just plain old Princess again and it breaks my heart to see her hurting like this both physically and emotionally.I want there to be a simple answer to what is happening in her little brain, something simple and fixable. When we started this journey almost exactly a year ago we were told that the chances were good that she would start medication and never have another seizure again, kids with absence seizures usually grow out of them, Ethosuximide is an amazing drug and after 6 months or a year it will be fine. Why the hell couldn’t the doctors and nurses been right? Why now have we gone from a few generalized petite mal seizures a week to several a day to hundreds a day to drop attacks, jerks, apparent simple and complex partials and tonic seizures, vomiting every day, weight loss she can’t afford, constant sleepiness and headaches that make her scream and clutch her head like it’s going to explode? I’m so scared something is going to show up on the MRI, I’m scared that there is going to be a more sinister underlying cause to all of this and I’m scared that like my mother’s cousin tey may never find a reason and in turn never find an effective treatment. I’m trying to be brave because Princess is being so brave but I’m so scared I want to scream and cry and curl into a little ball and cover my head and pretend that none of this ever happened. No wonder sleep escapes me.
This morning we woke up at 5:30 to head down to children’s hospital. Our water was frozen and something had burst spraying water everywhere under the house. Frozen pipes are one of those things that make living in a trailer almost not worth the cheap mortgage. So we have shut off the water and my mom and brother are going to try and sort it out for us; thank god for family.
So now we are on the shriner care cruiser. If you don’t know what the care cruiser is it’s a luxury coach operated by the bc yukon shriners that picks up patients and their families that need to travel to get to medical care at BC Children’s’ Vancouver General or Shriners hospital in Seattle. The bus is free, there is a bed for someone that needs it, seat belts in every seat that adjust for kids so you don’t need to lug booster seats and even car seats installed for little ones that need 5 point harnesses and recliners for napping. It makes 3 trips a week to Vancouver and back and did I mention it’s free! I have much love for the Shriners.
We got picked up in our town at 8:15, now we are on our way to pick up another family on the other end of the valley and then we will be off to Vancouver. We are staying at Easter Seals House, another amazing resource for parents of kids that need to travel to BC Children’s, the cost to stay at Easter Seals house is $20 per night for adults and $7 for siblings traveling with you, the patient stays for free. So super cheap accommodation on a few blocks from the hospital and 2 minute walk to catch a bus to the sky train station to go anywhere in the city you want to go. Now if the super cheap rates weren’t enough each room is actually a small suite with a kitchenette so you can eat in the room and save money on food while you are there, oh yeah and if you live in BC the super cheap room rate is covered by the bc resident program so actually it’s free. Yay for low cost trips!
So now that we have covered how we are getting there and where we are staying let’s get to the why we are going. It is time for Princess’ 3 month check in with her neurologist, since there has been new seizure activity and general feeling like crap he will be getting some tests done this time. She has an MRI and spinal tap scheduled for first thing tomorrow morning. Because 5 year olds have a hell of a time staying still for more than 2 seconds she will be put out for the imaging, thankfully that means she will also be out when they do the spinal tap. Hopefully this will give us some answers as to why she is getting worse instead of better and maybe give us a better idea of how to treat this. I’m scared to death that something will show up on the MRI that shouldn’t be there but I’m trying to keep that out of my brain as much as possible. I’ll keep you posted.