NG Tube, MRI, seizures…

I began to write up this blog yesterday, but by the time I was getting back to it to finish I was just to tired, and my thoughts were still a bit scrambled, I didn’t know how to really express the events of the day.
Yesterday is a harder day to describe. Was it a good day? It looks like Colbey Raye is feeling better, is she? How is Colbey Raye doing today? All these questions were a little bit harder to put a definitive answer to, as Colbey Raye does appear to be feeling much better and is acting so much happier too! So, yes, Colbey Raye did have a really good day yesterday! She was full, happy, all sorts of smiles and a bundle of snuggles! She’s off the IV fluids, so during the day she is a “free” girl and we snuggled with her bunches. She is on a slow drip through her NG tube from 4pm until 8am so for the afternoon she is a little more tied up but is still free to roam around and sit with us and snuggle the evening away. The feedings have helped with her spirits a lot! She’s been up for a lot more and her energy level is a little better also. All good and all helping her maintain a happy mood!
On Saturday morning Colbey Raye received a quick MRI to check and make sure everything looked normal, her fluid collection had increased a little after the EVD came out and it was just a precaution my make sure nothing was abnormal. The results came back clean and great, since Saturday the swelling has lessened tremendously and now the swelling is hardly noticeable. Still soft to the touch, and will be for a while, but the bulge of fluid is pretty much gone.
Today Colbey Raye is supposed to be receiving a video Swallow study, but so far we have just been working with the speech therapist on getting her to drink enough fluids to be able to undergo the study. We found that Colbey Raye wants to be a big girl now and would only drink out of the cup! But any drinking is fine with me, I can take the time to hold a cup and help her drink if it will help us rid her of the feeding tube! Speech is coming back around 12:30 to try again, fingers crossed she can get 2 ounces down without coughing!
And now for the part that I’m having difficulty expressing. Yesterday around 1pm Colbey Raye had her first post op seizure. It was a little bit different than her typical seizures, it started off with blinking and then her body stiffened as usual but her head turned to the left (usually her head turns to the right) and she did not shake during but was shaky afterwards. She was in a very postictal state afterwards where she was week, would only look to the left and her body was limp and very wobbly. Her right pupil was extremely dilated and she was confused and disoriented. She remained in this state for about 5 minutes and then slowly returned to a more normal state followed by a long refreshing nap! Colbey Raye is still in the post op window of time where this seizure does not mean one thing over the other, it could just as easily be a post op seizure due to all that she’s been through this past week and a half, or it could be the first signs of continued epileptic seizures for Colbey Raye. This is another one of the “time will tell” moments and we cannot jump to any conclusions one way or the other. But I feel so hopeful this time!! I’m not sure what is different about this event, but I didn’t panic, I haven’t felt to upset, worried, or like I’m constantly looking over my shoulder at her now. After Colbey Raye’s first surgery back in December she had a seizure just 3 days post op, and that seizure changed my whole outlook during that stay. The first few days I felt a huge weight lifted off my shoulders until thst first seizure hit, my world, my hopes of seizure freedom came crashing down around me, so it felt, and I returned to a constant state of cation, watching her every second and worrying about the next event striking. Why this time it’s different I do not know, maybe I have accepted this journey more fully, maybe my faith is a little bit stronger, maybe I’ve placed my trust in Gods plan, whatever the case may be I’m so much more hopeful this surgery will bring peace to Colbey Raye, and I’m so happy to see her beautiful goofy smile, my hope is high, my trust is deep and my faith is strong.
We are ready to being this baby girl home!!


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