Hannah was referred to the medially complex team (diagnostic referral drs) I told him that nephrology said they were surprised we hadn't been referred there before now, dr M said I am surpised too! He went through a lot of her medical history especially in the last year. He was surprised that she hadn't had a 24 EEG...her nuero says we know she is having seizures but dr M said he wants to know if she is having continuous szs...I agree with him, I already know she is having more szs than we realize. I told him about Hannah's leg swelling (just her right one) and he thinks she has
lymphedema. He changed her feedings so she is getting boluses at night too instead of continuous. We haven't started that yet, he wants us to check her blood sugar in the mornings and we don't have a glucometer yet. He also agreed that the mitrofanoff surgery is the best thing for her. He was looking at her bloodwork and said it doesn't look like she has
von willebrands..she does have some kind of clotting disorder so he was going to talk to hematology before out appt next week with them.
We have an appt with orthopedics wed and next week an appt with hematology for her bleeding disorder and surgery. then after Christmas we will have pre op. She is being admitted on Jan 9 for bowel prep and surgery is Jan 11. Urology said they start feeding them 2 days after surgery and she has to have a bm to come home. I figure about 1 week in the hospital if all goes well and she doesn't throw any curve balls at us :)
we are getting excite about Christmas, I think I finished my shopping today and next week, our middle daughter Jenn and her family are coming..I can't wait to get all my grandbabies together again.
Chuck, Hannah and I want to wish you all a very merry Christmas!
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| This shows the swelling in her right leg |
