We have made the move and been in Waterloo a day and a half now. We had a rough transition with Ellie missing some tube feedings each day. Thursday morning the tube was coming out of her nose quite a bit so before they could feed her they needed to make sure it was still in her stomach. It took forever to get to x-ray to do this so when we finally got there is was past breakfast and lunch times. The tube was in the wrong spot. They had to push it back down her nose to get into the stomach further. Then she finally got her feeding plus extra to make up for the lost meal. I was very frustrated today and both Ryan and I thought if Friday goes this way then we are asking to go back to Iowa City. I think it will go smoother now that her tube is in the correct spot. Shouldn't have to deal with that anymore.
Ellie got to go outside and plant flowers for recreation therapy. She loved it! I'm trying to get pics up but it's not working for some reason. I'll try tomorrow.
Today there was another swallow study done to see how her swallowing is progressing. She wasn't coughing near as much as before but some food is still going down her wind pipe. She does respond with a cough when it does, sometimes delayed and other times right away. It's a tiny bit that goes down with pudding and honey consistencies and the cough is productive to get it out. We are going slow with the eating to continue with therapy. The doctor talked about putting a feeding tube right out from her stomach because she may need the tube for 3 or more weeks. So we are going to talk to a stomach doctor about this to weigh the options. I hear it's much easier and not so bad.
We are ready to start talking about signing up to stay with Ellie when she's not in therapy. It looks like the mornings will consist of half hour help from OT to get ready and then the different therapies spread out during the day. Speech, Occupational and Physical therapies all see her for half hour two times a day. Rec. Therapy is one time a day. If you are there for the 8 o'clock time you will get breakfast and for the 12:15 time you will get lunch. They have ordered meals for one of Ellie's guests each meal. Actually the person who eats breakfast fills out the menu for the next day. You don't have to eat the hospital food but it'll be there if you want. Anyway, can you please email me about times next week you think you'd be able to help. I haven't totally figured out when I'm working. I think I'll be there in the morning to get Ellie up and when she's set to go or in therapy and someone else comes then I'll head to work at 9 or so. Then I'll see what coverage looks like throughout the day and stop in when needed. Then for sure try to be back to the hospital by 5 with Nate. Anyone is welcome to help us, if Ellie doesn't know you very well then I'll see if I can be there to introduce you and get you settled in. She has tons of activities to do there already. Or if you haven't met her before maybe you could stop by some evening before you stay with her to meet her with us. If you can't stay with her that's totally fine you can still come and visit. Just let me know when and I'll see if it works.
Well then, that's all for now and please call or email me with questions, asmiley35@yahoo.com Thanks so much, love you all for all your wonderful support.
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