Wednesday, November 13, 2013

Agh! That bump in the road hurt....

Well, I think that Grace has loved all of your prayers and attention so much that she wanted to make sure she stayed at the top of your prayer list... David and I got back to our hotel room (remember we can't both sleep in her ICU room, so when she's fully sedated we stay in the hotel right next to the hospital) at about midnight (I think we feel asleep before our head even hit the pillow due to sheer exhaustion) and my phone rang at 3:30 am... That's never a good thing! It was the senior fellow in the CVICU and he stated that Grace was behaving in a way that made them concerned about seizures, so they called in the Neurology team, who was doing a CT scan, EEG and started her on seizure medication to be safe. As you can imagine I asked a lot of questions to better understand what exactly Grace was doing, what drugs they had her on, etc. It sounded like she was moving/thrashing in a way that resembles what happens when she breaks through sedation, not exactly what you would typically expect to see with a seizure, but they remained concerned about potential sezuire activity.  David and I were not convinced that she was on enough sedation (although it seems like a lot to them, we know that it takes A LOT to keep Gracie down and if you get behind her sedation it's hard to get it under control). They reassured us that there was no reason for us to come in yet because they were just doing tests and gathering data, so David went in early this morning while I get packed up (our hotel is sold out tonight, so we are homeless until tomorrow). So far, all that I know is that Neurology just called and said that they don't think it's seizure activity (PRAISE THE LORD!), but they still don't have her figured out. David can't text or talk right now because Grace is needing a lot attention to keep her calm. Village, we need you! We are always so focused on her heart, it is hard to now also be concerned about her brain. Please pray against seizures, stroke, etc, that they will figure out what Grace needs quickly and be able to address it effectively! Thank you for standing in the gap for us because we are weary, but not defeated .

Blogger is giving me trouble so I can't post a photo right now, so just picture Grace with "stuff" all over her head (measuring for seizure activity) in addition to all of her heart stuff :-(








3 comments:

Kathy A. said...

"He gives strength to the weary and increases the power of the weak.....but those who hope in the Lord will renew their strength. They will soar on wings like eagles,they will run and not grow weary, they will walk and not grow faint".

Love you all and of course PRAYING!

Aunt Kathy

LEENA7 said...

Parents know their child better than anyone, so they will usually take into consideration what parents say..nut you need to be there to let them know these things. Precauutions are also good at a time like this.There should be a Ronald McDonald house nearby that will help you with a place to stay ask the nurses the may know. Sime one can stay with her, you ony need room for one and you can alternate. Praye.rs for her and your docs

One Acre Farm Rabbits said...

You don't know me, but I am friends with Rachel Bullock. I have been following Gracie's story and praying for all of you. God grant you peace and joy through this and know that there are people everywhere praying for that sweet little girl! (((hugs)))