Day One Of Our Stay ....

    They got us to her room, then the nurses come in to do vitals. They get her set up in her bed , then EEG comes in to place the electrodes, and set up the camera and other equipment. 

   Then the Dr came in to discuss everything that they would be doing, and to see if we had any questions.  The plan was for sleep deprivation all night, then to do testing in the morning to see if they could trigger a seizure...

  Then there is just the waiting... and sitting... Thankfully hubby was here during this to help entertain her.  They watched a movie, then they did a craft.....

They brought in SLIME! It was really cool how they had it all separated and all she had to do was mix it. 

They brought in her room service menu LOL. For a kid with allergy restrictions this was a really awesome menu! They had a great selection included smoothies! She ate a lot of salmon and shrimp during the week! lol 

After we got her set up with dinner we went to the Ronald McDonald parents room to register to use it during the week.  They have a entire house off site for families that are from out of town to stay at, but at the hospital they have a beautiful place also. It has what looks like a beautiful family room with a fireplace, bookshelves,  there is a computer area , showers, washer and dryer, and a couple of bedrooms that you can use to nap in for up to 2 hours at a time.  They also have personal hygiene items and other supplies that they hand out.

We had got there at dinner time, and they have a program where people and business can sign up to bring in meals. ( We will be calling next week for a time to give back and bring in a meal ) 

A family had made chili and chips. It was an incredibly welcome sight as the fact that we were admitted to the children's hospital for the week set in, and emotions hit....

We went back to her room, her and Daddy played a video game ( every room has an xbox, and they have a movie and game library ) so I could nap before I set in for a long night of keeping her awake. 

Daddy left at 9pm, and our first night begin....

More tomorrow ...

Life in The Childrens Hospital

This week finds us in the Neuro Trauma Unit at the local children's hospital.  Hippy Kid has had seizures for many years ( possibly since birth ) and has a diagnosis of focal seizures as well as generalized tonic clonic.  She has damage to the gray and white matter of her brain from lack of oxygen at birth , so they believe that is what causes her epilepsy.

So after trying 4 different medication to control her seizures, the last giving her Steven Johnson's Syndrome ( picture's below ) we are trying to get approval for a medical marijuana card, so we can see if that will help control them. 

As you can see SJS is horrible :(  It created blisters all in her mouth so she couldn't eat. ) . It took months to clear up and we had several trips to the ER through it. 

So with that now comes an in patient stay to monitor her seizures. They are trying to find all the triggers, and also trigger seizures so they can capture them to submit to the state for approval for a MMJ card.... This is ridiculous honestly. But we don't want to have to move states and become what they call " medical refugees " just to be able to give our child the chance to try plant oil to see if we can control her seizures without the side effects of pharma meds.  

So here I sit in the Ronald McDonald house parents room, typing this... I am thankful for the quiet space to sit and take a breath away from the beeping of the monitors and the bustle of the neuro unit floor. 

I will do daily posts showing what life is like here for her, and for me as her mom. 

Much Love,