Just a quick, (or not so quick) update.
We had a scare this last week with Noah. We have been told to expect many emergency trips to the ER. We were even told at the very beginning to have a bag packed and near the door or even in the back of the vehicle. So far we have made it 15 weeks into his treatment without a single ER trip.
This all changed this last week. We noticed he was warm, Checked his temp (about 9 times using two different thermometers) and it was in the danger zone. We have been told that if his temp gets to 100.5 to bring him in. We was running 101.4. We called his doctors and confirmed he had to be seen. The worst part is the ER does not know anything about his treatment. They asked Gina a hundred questions. She finally said he is undergoing treatment HERE in this hospital. Don’t you have his records on file? Someone in the ER took notice of her frustration and looked him up on the computer. I told Gina she should have asked them “Do you want me to go upstairs and get his records for you?” At any rate they gave him an antibiotic and some Tylenol. His temp came down and his blood work came back with good numbers so he was released. They got home about 7pm. By 9pm his temps were back up to 101-102. We called his doctor again, he reassured us that Noah was covered by the antibiotic for 24 hours and if the fervor did not subside by the next day to let them know. It was a very long night.
The next morning his numbers had come down some. He gets an oral antibiotic on the weekends as part of his meds so again we had to call and double check that it was OK to give him the weekend meds on top of what he was given in the ER. We were assured again that it was OK to give him his weekend meds.
During the ER trip the staff inserted the IV into his port incorrectly and filled part of his chest with saline. Gina said he was crying hysterically. Overall it was a tough day for Noah and not so much fun for Mom and me. (More so MOM)
Noah’s primary team of doctors were amazing by calling us back each time we had worries and assuring us he was going to be OK. Today on Mothers Day he is doing great! His activity is back up and his temps are normal. I wish more people could see him on a day to day basis and realize the resilience of this boy.
He truly is The Amazing Noah.
Thank you all for your prayers!