Update Day 62/33. Mom didnt sleep again last night - always moving and shaking and picking at something. She ate well all three meals and didnt participate much in her therapy sessions until it was time to walk and she did walk further today than she did yesterday. Dad is able to ride in the Madonna van with mom next Wednesday to her follow up with Dr. Surdell and I will meet them there - great news! I know my dad would have done fine following them - but would have worried non stop about her. Patty and Mike L Wright came today and had lunch with dad and he really enjoyed seeing them! The dr is giving mom something different tonight to help her sleep - still no word on removing her g-tube - hopefully tomorrow - one less thing for her to mess with and then that large abdominal binder can come off - it makes her so hot and uncomfortable. We were able to talk to mom on the phone tonight and it was so cute - Julia talked first then when it was Simons turn we put her on speaker phone - Simon said Hi Grandma this is Simon and she replied Hi Simon, this is grandma. I didnt expect this to be easy on my kids - but I didnt think it would be this hard. She is their world - and they are hers - I dont know if I expected them to be used to it by now or why I am so shocked by how much this has affected them - and it still breaks my heart - every time Simon leaves Lincoln or finishes talking to her on the phone - he breaks down and cries and says how he just wants his grandma back. Tonight was especially hard because he didnt get to see her last weekend - and this coming weekend Jeremy has to work 6a-6p Saturday so they wont be coming up until Sunday and it will be a short visit because Jer will have to leave early to take Harlee home and both kids are torn because they want to ride home with Har to get every last minute in with him as well (never enough Harlee time either) - but at the same time want to stay longer with Grandma - so it will be a last minute decision I am sure on what they end up doing Sunday afternoon. It is a blessing that Dad feels GLC Columbus will be the best place for her if she can not return home right away from QLI or needs to live in a nursing home long term - so the kids can see her every day. My mom hasnt missed anything school related for either kid - and makes it to most of their games as well - so having her in Columbus will be a huge help for me when those things come up - she will already be in the same town. I filled out the survey from moms stay at UNMC and I cried through most of it because we were so blessed by the staff while we were there. I told dad, and wrote on there, that I feel the transition to the 9th floor and then to Madonna was so hard on us (dad and I - not mom - which this isnt about us - I know...) because we were so blessed by the staff on the 8th floor and any care mom receives after that will never be good enough. We were lucky to have the best nurses in the world - who took incredible care of my mom - and of the two of us as well. Not once did they make us feel like we were a burden - always took the time to explain everything to us. I never questioned the care mom received at UNMC - and I never will - and I thank God every day for the staff on the 8th floor - I dont know how I could have made it through if it wasnt for them. After I left I called twice a day to get an update on mom and when she was on the 8th floor they kept me so informed - I could go on and on and still not feel as if I have been able to explain to you all how wonderful they are at UNMC. IF ever - ever - God forbid - your loved one needs anything neuro done - I would suggest that the best thing you could do for them (and yourself) is take them to UNMC. Ok - I will stop there. Hope everyone (especially my parents) have a great night!
Posted on: Wed, 02 Apr 2014 01:47:35 +0000
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