Cohen's was admitted to the Carillon Children's Hospital following his EGD and Flex Sig copes on Tuesday September 3. It was a long morning, apparently necessary steps were not taken to get our insurance approval in order so we waited for hours until the office opened and approval was finally given...my poor tired hungry baby finally went into surgery four hours later than scheduled. I have to say that watching them put him to sleep was on of the most difficult things that I ever had to witness. The second hardest thing I had to do was to walk out with him still lying there on that table surrounded by strangers.
We were sent up to his room to wait for him during his surgery....it was a long two hours until I saw that sweet little face again. Cohen's GI was pleased with the way his system looked so we began to devise a plan to get him eating some safe foods. It is so difficult to know that your child's well being rest on the decisions that you must make. Doctors give you advice and information but ultimately the decisions are left to the parents, what an immense weight that sits on our shoulders.
During our stay we had the opportunity to teach many health care professionals about FPIES and to learn more about how to manage our special boy's condition. We made the difficult decision to bring Cohen home with a NG tube (a feeding tube that goes in his nose and into his stomach). Our doctors felt this was the best way to help nourish him right now until we can find more safe foods for his little belly.
I am learning to embrace our situation and my son's exceptional needs. I am treading in new water, learning to do things that parents shouldn't have to do.... but I won't let any of this steal my joy. "Devil Get Behind Me" our words close to my heart right now. I will fight for this family and this little boy, doing everything I possibly can to maintain joy in their sweet little lives.
I don't know how people could begin to get through difficult times with out calling on our maker, ultimately He is the one in control. I know that my child belongs to Him and that He loves him more than I do (which is extremely hard to imagine). I lean on the strength that comes form the one that holds me in His hands and comforts me when I need it most.
Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”