We showed up early in the morning and Ellie was already fighting us to even put cream on her arm and cover it with a bandage to start to numb it so the poke of the IV wouldn't hurt. We had to hold her arms still so the nurse could do that. She fought and fought and fought. Then it was time to take an oral med to calm her down so she won't be so fiesty when it comes to putting the IV in. Well she refused and refused and fought some more. So they got permission from the anesthesiologist to do a gas mask to put her out then they could do the IV and MRI while she was out. So a couple nurses and I had to hold her down to put the mask over her face until she stopped fighting us. It was so sad I cried cause I know we are retraumatizing her. It hurts to have to force your child into doing something she is afraid of. I feel horrible.
After she recovered from the meds and woke up enough for us to transfer her we went to see Dr. Bautti. He is her oncologist and he said the scan was clear and no concerns up there. He said that there is a syndrom that happens to people who get radiation in their brain between 3 weeks and 3 months after the finish of radiation. It presents exactly like Ellie had as tiredness all the time. Their recommendation when this happens is to just let them sleep when they need. It goes away in 1-2 weeks and then never tends to come back. Although he wasn't sure because Ellie did have the blood test result of elevated white cell count for a virus so he wasn't sure if it was that syndrome or a virus that made her tired. Although the viral count could be from the infection she had in her eye maybe. Who knows. She recovered from it and she's good now.
Then we had him look at the scar and the scabs that haven't healed yet. So we held her on our lap tightly so he could look at it. She has this intense fear of anyone touching her head and hurting her. So he was slightly concerned they hadn't healed up yet so he suggested we go up to Menezes's office so they can look at it and do what is needed. They said sometimes the internal stitches get pushed up to they are near the skin and that could be keeping the scabs on there. If they are still on next time they may be pulling them off. We can try to sluff them off in the bath when shampooing her hair. If there are signs of infection we have to call them to get her on antibiotics. It's also good she's swimming once a week at school to keep them clean and maybe coming off while swimming. We go back in three months sometime to see Dr. Menezes, Dr. Gantz, Dr. Bautti and do a stealth MRI. That means it's 12 minutes long and we are going to try to have her stay awake for it. Or just give her meds to relax her. Then the time after that it will be a long 2 hour MRI to do brain and spine. That one will be with full anesthesia.
This morning I took Ellie to the eye doctor to follow up on her infections and they are clear! So I thought at this time Ellie is healthy, buuuut.....If it's not one thing with this child it's another. I just got a call from the Price Lab nurse and Ellie was down there because the inside of her mouth hurt. So the nurse looked in and saw a canker sore on the inside of her cheek. So she put some orajel on it and sent her on her way. While eating lunch the nurse went to put her eye drops in and Ellie said her mouth felt fine. So yeah, this is minor but seriously...
Thank you all for your prayers, we are thankful she is clear of tumors right now. Praise God!
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