The neurologist came in and confirmed that these episodes were happening on her left side of her brain, she is left handed so we were hoping the episodes would show the problem on the non-dominate side. They did! They did seem to travel over to the other side but they were able to clearly see that they started on the left side. They told us they'd like for her to have 2 more so they could see consistency. If we got two more, we could possibly go home early. Tonight they will keep her meds away and let her sleep normal. We did get lots of visitors today too including Emma. They played with chalk together.
Day 4 - Thursday - No seizure activity during the night. Nate stayed with her and I came to switch with him this morning. At 9:30 she had a 2nd episode and it was exactly like the first. During this one, at the end she was able to say "yeah" and "no" but wasn't able to speak more than that. She was tired afterwards, but shortly after little brother came to visit. We also got to see 3 therapy dogs.
The afternoon was uneventful. She didn't have any more episodes so they decided to keep her meds away again tonight and then plan to do an MRI tomorrow morning then send us home. Right now, they think that even if the MRI came back normal, they would recommend sending us to Ohio cause no tests have said she isn't a good candidate yet. We painted, played doctor, played with chalk and played Memory (Thanks, Shannon!)
Day 5 - Friday - No more episodes last night. They came by this morning and said she couldn't eat anything because we were unsure when her MRI would be. She was a trooper, even with no food. They gave her a large dose of Keppra through an IV and then came in and took her EEG probes off. She was so glad to be done with those for sure! We took a bath, washed her hair and enjoyed the freedom of no bookbag connected to a big computer while we waited for them to take her to her MRI. The child life specialist came and showed Maddy what an MRI was going to be like and we headed down.
She was really upset by the MRI mostly because she didn't want them to make her go to sleep - my crazy girl! The finally told her they could put a movie on through some headphones and glasses and she could watch the movie during the MRI. They process would take about 15 minutes. I was very skeptical. She had been confined to a bed for over 4 days and we were hoping that she would stay completely still for 15 minutes?!? They assured me that if she only made it 5 minutes, they would just pull her out, give her sedation and go on. The anesthesiologist began to tell me the side effects and when they talked about having to put a tube in her throat if she had problems breathing, I began silently praying that she would be able to do it without meds. By this time, it was 11:45, she hadn't eaten anything since last night and the grogginess would take 1 hr. to wear off. We wanted to get home and be in the comfort of our family. We opted to try the movie with the bribe of a big treat if she did it.
We took her back, got the movie set up, and I placed my hands on her feet to let her know I was there. Each minute I kept waiting for the antsy moment when they'd slip in and give her meds. I knew it was inevitable so I waited. Minutes passed and she didn't more an inch. I kept praying, "Lord, please help her stay still. Please help her not move." As I said this over and over, I began to realize that my prayer was being answered in front of my eyes. She sat completely still for 15 minutes. They did the MRI and we were done. I was so proud and she was proud of herself. Before the MRI she was getting very whiney and by now she was back to her spunky self. She was bouncing all over the bed as they brought her teddy grahams, goldfish AND a sprite - so much for keeping that diet, eh? When we got back to her room we also found that the anesthesiologist had picked out a toy for Maddy since she did such a great job. I waited for lunch and the discharge papers to arrive.
I looked over, and Maddy was off to sleep. She finally was unplugged from everything and she was exhausted. The Epilepsy specialist came to the room and said the MRI showed that her brain was asymmetrical. He said the left side of her brain showed some damage and shrinkage that went hand in hand with what the EEG showed. This MRI result and the EEG lined up to make her a good candidate for surgery so far. He said they'd be in touch with what was next but they planned to send her records to Cleveland Clinic to get her scheduled for a dominance test there and any other things they'd like to do. Now that tests seem to say that removing that part of the brain will stop the seizures, they want to know what her day to day life would look like in the event that that piece was removed. She is left handed but we need to find out how dominant she really is on that side.
We jumped in the van, grabbed her some lunch on the way home, and settled back in to life. We are SO glad to be home! Now we wait...
Thanks for the prayers and encouragement this week. The food, toys, letters, texts, money, etc. have all been SO great. The community has been what's kept us going....other than our Father's sustaining strength, of course! I have also learned this week that Maddy is such a fighter. God has definitely given her some stubborn determination that will be a great companion for her road ahead. Continuing to pray for wisdom for us and ultimately healing for her, miraculous or through doctor intervention.
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