One week Post Op

So far a wonderful start to our morning! Her EVD is scheduled to come out later this afternoon if all continues to go well. The leaking, caused by a pretty hard tug Colbey Raye gave it, from the entrance sight was very very minimal through the night after a stitch was placed to tighten the seal and the swelling on her temple is not any more taught than it was last night. All good things, and hopeful for Colbey Raye to be successful in avoiding the placement of a permanent shunt! Woo hoo! We learnt last night that the true overall percentage of receiving a shunt after a hemispherectomy is 40%! We were originally told that Colbey Raye had only a 10% chance of needing a shunt, and this is because Dr. Ojemann is so patient in his attempt to avoid placing shunts that time pays off and his shunt percentage is only 10%. So blessed to have a patient diligent surgeon working with out baby, as I’ve heard shunts can be a bit of a hassle.
Yesterday Colbey Raye had a slump in her desire to eat and did not eat until dinner time. She still was not drinking any fluids on her own so she’s been on IV fluids this whole time. She had been coughing and choking on her meds a lot and a swallow study was ordered. Not much was determined after the study yesterday so another one was scheduled for this morning at 9. This morning Colbey Raye woke up happy, hungry and ate her oatmeal without any problems! Speech therapy was back at 9am to watch meds, and we are now using a binki trainer to help her take her medications more easily, it worked like a charm and Colbey Raye only had one cough while take all 7 meds! Speech therapy watched her eat some yogurt, Colbey Raye did great, no problems there, and even ate some puffs and chewed them up like a champ. Now for drinking, this is being a little harder to get Colbey Raye to cooperate for. She’s enjoying playing the “throw my cup and laugh historically” game and was not drinking still, so speech therapy brought in a few different bottles. Finally one small enough for Colbey Raye to hold herself (as she is refusing any help from me or anyone else, miss independent…) and she finally, after much coaxing, began to drink the juice from the bottle! She did okay, she coughed and choked a few times, so now we have to watch her closely to see how she is drinking and may need to start thickening her fluids a little. Not to big of a deal at this point, but it could take some time before Colbey Raye handles thin liquids well like she used to.
As for miss Rayes little personality? Last night she was full of giggles, smiles and she was fighting for our attention 😊. She was a little irritable last night but we had cut back on pain meds so it could have been due to that. Since we have been up this morning Colbey Raye has been nothing but smiles, giggles, one armed claps, and she is all about the peekaboo games and throwing toys on the floor so mommy gets them games! We read a few books together and the constant smile on her face was the most adorable thing I’ve seen! She loved listening to the story and even took interest in looking at the pictures. What a happy special girl she is. She is still not moving her right side much at all, but is less irritable when I tough it. She enjoyed it when I played “this little piggy” with her toes and even moved her toes a little, but not her leg. She hasn’t moved her fingers yet, but will lift her right arm a little bit when she’s in pain. She is turning her head to the right and trying hard to see what is going on over there while greeting people when they come in the door now. She is sleeping good at night, and is back to sleep now taking a morning nap. We are feeling so blessed by her spirits and her improvement today, such a better morning compared to yesterday! We still do not have an estimated discharge date, but with her spirits and determination I’m hopeful that we won’t have to stay to far into next week, praying for that at least! As many doctors, nurses and therapists have stated, this is a marathon not a sprint, and Colbey Raye is one determined little girl who will cross that finish line in due time!





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