Hannah working on a wind chime for Nana....
We are home from our VEEG stay at IU Hospital. It was a new experience as this was the first, NON Children's Hospital we have ever stayed in. Most of the staff were great. I think they enjoyed having a kid to work with. The biggest thing was that they didn't have a Child Life Department, which I knew ahead of time. So we brought our own!!!! We had every craft under the sun. It was "THE ACTIVITY ROOM!!!" We were able to keep her very busy.
Blitzen was quite the hit as well. Everyone loved him. The word spread quickly that he was "in the house!!!" Employees and patients were coming to see him. We made lots of friends this past week! Top kuddos go to our favorite nurse, Melissa. She was our nurse the first day and set the bar very high!!! (she came to visit us the rest of the week even though she wasn't our assigned nurse). She would do ANYTHING and EVERYTHING for Hannah....What a fantastic asset to Indiana University Hospital. TOP NOTCH!!!
Hannah is the bravest, best trooper I know. She got four IV sticks (two didn't work) and didn't even flinch. The nurses commented that she did better than most adults there. Hannah didn't complain at all the entire week. She even wore her BI PAP mask. Most of you don't know how monumental this is. She didn't used to wear this in front of anyone...not even her dad. She was very self conscious of how she looked in it. Hannah declared this week that she LIKES it!!!! WOW. When she is ready for bed, she now asks for it, I help her put it on, and she is "light out." I am one very proud mama.
We had to wrap her head so her BI PAP wouldn't mess up the wires....
Hannah and our favorite nurse, Melissa
We got some really good information while spending the week there. Most telling to me, Hannah's EEG pretty much looks the same on meds as it does offf of meds.... I think a change is definitely coming our way. We did get to see Dr. Salanova while we were there, but she wanted to wait until she could see all the information and the report until she gives her recommendations. We have a follow up appointment in March, but not until the 17th. I am very anxious to see what we are going to do. Hannah had only one small seizure while we were there. She had tons of spikes and slowings of her waveform, which is seizure activity. Dr. Salanova did not want to take her off her medications. She wanted to see how she looks and functions on the current dose. Apparently not too well.....
While we were there, I also got a call from genetics. Hannah does not have Ring 20 Epilepsy Syndrome. I really thought this was going to be her diagnosis. Her 20th chromosome was normal, not showing any ring. So, the search continues.....
Giving lots of lovins to Blitzen. He loves laying with her on the bed...
Awwww. gotta love it......
We always hang a sign on the door, so no one is surprised to see a dog in the room. (especially unsuspecting staff in the middle of the night!!!)
Just Chillin......Life of a Working Dog!
2 comments:
I love the new blog Marcia. I always look forward to your updates.
Well...lots for you to think about, huh. What a roller coaster ride the quest for a diagnosis is. I'm sorry, hon. But the pics are cute...if that helps?! :)
...danielle
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