Well in one of the last entries I mentioned hoping to not have to deal with the tube coming up again. Well it did Friday morning. It was out maybe 8 inches. So we got the nurse and she was going to take the tape off Ellie's cheeck and put the tube in. Then Ellie's pediatrician Dr. Van Sickle walked in so the nurse stopped getting ready to put the tube back in so we could talk. Well Ellie spoke up after a while of talking and said, "mama, is it back in all the way?" She has slowly wiggled her tube back down to where it needed to be while the doctor and I were talking about things. She also took the tape off herself while I held the tube down so that didn't hurt as much either. It seems she has learned to do the things that are painful herself so she can control the pain and method. Pretty neat I think. So when the nurse came back in all she had to do was tape it down at the nose. Then the nurse tested to see if the tube was in her stomach by pushing some air through the tube...and it was! Then she could get her breakfast on time. YAY! Saturday morning it had not moved at all because the nurse found better tape that the tube doesn't slide on. We are still debating the G-tube. We think we are going to see what result we get on this next swallow study and then decide depending on how much time they think she'll need tube feedings for. We were happy to talk to the GI doctor Friday about it though.
Drawing blood was a battle yesterday also. The wanted to test her blood to see if the nutrition they are giving her is the right level for her. We had to hold her down to put the numbing cream on her arm and then to draw the blood. She is fed up with everything and getting pretty grumpy. Pray for Ellie to be cooperative through all the treatments she has to get. Eye drops every two hours is a lot and then blood pressure, feedings stuck to a tube for an hour 3 times a day, everything is just building up for her. She wants food and wonders when she'll be able to talk normal again.
I called to see if getting radiation in Waterloo was an option and it is NOT. They don't do pediatrics up here and can't do a bite mold something here either. So we will for sure be going to Iowa City for radiation later this summer. I am fine with this because Dr. Bautti is a good doctor that has seen multiple children and adults with this type of tumor and has worked with pediatric radiation oncology patients for many years. He's got the experience we want! I can deal with the hour and a half drive. Just means being away from home from Monday through Fridays. Then coming home for the weekend. We hope to be done by school but not sure that is going to happen for sure. All in time...it will happen.
I use a short prayer I got from Dennis one Sunday morning, "Dear God, your will, nothing more, nothing less, nothing else. Amen"
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