Monday, June 27, 2016

The day before...

The day before the appt in Greenville. Asked chase my usual morning questions: how did u sleep? Fine is the answer. Do u have a headache? No is the answer.  Did u have any numbness..... And so far our last episode was that Thursday morning. But today he answered with a hesitant yes. I asked him why he didn't want come wake me? He said that he just didn't want to and didn't want to upset me. I reminded him of how important it was to let me know because I'm documenting for the doc appt. I then went thru my usual battery of questions: was it just ur face! No. Show me where u went numb. Points all down his left side of body this time. I ask if he can smile, which he gives me one of his goofy smiles. I ask if he is still numb. He says he is tingly mainly along his jaw line and cheek. I asked if he had a hard time breathing like last time and he said yes. I asked if he had drooled a lot this time and he said yes. Checked for fever and normal - 98.0. I asked about when did it happen, after mommy put u to bed, middle of night, or just before u got up? He said middle of the night. I'm not really sure what to think. I did not take him to ER like doc said because our appt is tomorrow and he seems to be fine and acting normal now. 

Friday, June 24, 2016

Let the picture speak for itself

Geez, I didn't realize how long it's been since I've blogged. It's funny how time just flies and slips thru your fingers when you are busy raising a family, going back to school yourself and just trying to live. I find that when things happen I turn to blogging. I think it's my way of getting all the thoughts out of my head.

 We have had a situation arise with Chase. It's funny because 2 days before all this started I received a Facebook msg from a sweet lady who stumbled upon my blog regarding Chases bruises and her daughter having the same issue and if I had had any success in finding out what it could be. I updated her but funny how 2 days later we would be faced with another mystery with Chase. Up until then I had pushed my feelings about the bruises, night sweats, swollen lymph nodes to the back of my mind but always in my gut. 

May 27 (Friday) Chase graduated Preschool. The school had a party/picnic outside with bouncy houses, watersides, etc. Upon changing Chase in the bathroom I noticed a new mole on Chase. I don't know if other moms are like me, but I know where every mole is on every one of my children. This was new. So I got a closer look. It was on his back up near his neck. It didn't look like a mole though upon closer inspection. It was shiny. So I scratched at it think it was some kind of dirt or leaf remanent. And low and behold it had legs!! A tick??? NO STINKIN WAY!!!!  I freaked. Grabbed our belongings and dragged chase out to my husband and had him identify it. Sure enough, it was a tick. So he took a pic, I got a first aid kit from school with tweezers and my husband was successful in removing the whole thing. So I swiped the area clean with alcohol pads and put the tick in a ziplock baggy in case we needed to send it off to be identified. In the mean time he sent an email to a tick identification website. They responded in 24 hrs saying it was a nymph lone star tick that didn't seem to be attached for long, less than 24 hours. They also said that this particular kind of tick does not typically transmit Lyme disease, but it's possible. They gave us a list of symptoms to look for and said the earliest symptoms could happen is around the 3 day mark. So they weekend goes by, nothing. I'm going over him with a fine tooth comb and nothing. But I know Monday is the 3rd day which also happens to be Memorial Day. 

So Monday May 30th, morning rolls in and I start my usual routine. Coffee!! Coffee is life! I'm one of these people were you should not really attempt a conversation with me until I've had a cup of coffee. At any rate, sitting at the counter watching my Fox News and drinking my coffee, when chase comes up to the dog gate at the kitchen door (that we keep up to keep the puppy in the kitchen). I lift him over the gate and he sits down by the dog bowls petting the puppy. Next thing I hear is water splashing on the floor so I assume chase was playing in the bowl and it spilled. So I swing around and I see him standing with his hands cupped under his chin with a panicked look on his face with clear liquid just pouring from his mouth. He seems to be holding his breath too. So I get down in his face and I look my sweet baby in his eyes and I ask are you ok? He tries to get out the words I don't know but it's all jumbled and slurred. He seems disoriented and I ask again, what's wrong Chase? He tries again to get out I can't feel my face but this too is jumbled and slurred and he is just being weird with his speech. So I grab a kitchen towel to try to catch all the drool that's pouring out of his mouth like Niagara falls. I immediately grab my phone and snap a few pics of his face. I asked him to smile his biggest smile and try to make a squinty face. You can see in the pics, something is obviously wrong. When Chad comes out of room dressed, I inform him of what's going on. By now chase seems better but still confused as to what just happened. 

The appt line for the clinic opens at 7am, so I call to get an appt. I tell them about the tick and the episode just now and say I'm not sure if they are connected. We get an appt at 1:10. Meanwhile, Chase is hanging out on the couch playing the wii u pad. 11:30, I hear him say Oh no, it's happening again, slurred. So I grab a towel because drool is pouring out again and his face is distorted again. So I grab my camera and start snapping and instructing him to smile his biggest smile. This lasted for a min maybe two mins, but the numbness goes away according to chase. I ask if he is numb anywhere else and he says no. 

We make it to the appt at 1:10, not with his normal primary care doc. This doc wants to treat him as if he has late stage Lyme disease (LD) without doing any blood work to confirm. Said his facial numbness is Bell's Palsy (BP) and is characteristic of late stage LD. She also prescribed a steroid for the BP. 5 days for steroid and 21 days for antibiotic. 

For reference here is a normal smile

We finish the steroid and continue with antibiotic. Life goes on. Chases older sister Em graduates from high school. Lots of family in town for that. Antibiotic finishes June 20. Fast forward to yesterday Thursday June 23 at 4:30am, and I hear the bedroom door open and pitter/patter of little feet and awake with Chase standing next to me trying to say It's happening again but his speech is slurred and drool is pouring out. So I jump out of bed, grab a towel in bathroom, and try to catch all the drool. I get back bed and tell him to climb in so I can snuggle with him as he gets thru this episode. He tries to climb up but his right arm is weak and he kind of falls back. So I grab him and pull him in bed. I couldn't go back to sleep and knew chad would be up soon for work so I tucked chase in my side of bed and went out to kitchen to get my first of about 6 cups of coffee that I had that day. I'm the Google queen so I immediately went to google. Which is a scary place and I don't recommend. I've self diagnosed myself with every aliment out there. I think there is a condition where you self diagnosis any rate.....

I call appt line as soon as it opens and request an appt, this time I get his primary but it's not till 4:30. Chase finally wakes, so I do a head to toe assessment. Asking him if he felt numb in his should, he replies yes. I move down his arm and he rep,it's yes. I ask if he felt numb in his leg, he said just a little. So basically the numbness is now down the whole right side of his body, not just his face. 

Chad takes him to appt, because I had class. Texts me through out the whole appt. Doc is baffled and doesn't have an answer or diagnosis. Wants to consult with the big wigs at Portsmouth Naval Hospital in VA. She said she would post a forum topic to a doctors only forum and get some guidance and get back with us today (Friday). 

So here I sit, anxiously awaiting the phone call. I don't dare let my phone sit on vibrate nor do I allow it to drift more than a foot away.