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.