We are here and all is well. Our flight in yesterday morning was great thanks to Capt. Jack. Rourke got checked into the Ronald McDonald House then and we headed over to CHOP. Rourke stayed at the Ronald McDonald House the first night because he ended up getting called into work the night before we left, because there was problem at Honda that required his attention to get them through the week. We hit Clinic first and Eden was very upset when she found out they use a different kind of needle to Access then we do in Columbus and she stated that next time she would be bringing her own needles! (We never have to worry about Eden standing up for herself) Rourke however ask if we could try a ½” needle and it was to short. I order to make the draw; the nurse had to press against her port to make it work. So, because it had already been accessed there was a hole and Eden said that it would be ok to change it out. We made it into the main hospital and into her room about 6ish and Rourke was short lived and headed back to the Ronald McDonald House by 7:00 and he ended up walking just to gauge how long it would take in case of an emergency, he missed the bus figured that we needed to know what it would take to get back and forth on foot.
It was almost 45 min after he got lost and he was asleep just after 8:00pm.
Eden wanted to explore the floor and check things out so we did that and she ate for the 10th time that day and played with some other children in the playroom. About 9pm she was DONE. The night went fine expect she had to wake up for some oral liquid meds that she was not happy about. Eden would rather take 30 pills then one ounce of liquid and unfortunately she will have to take this liquid medicine every 6 hours (Day and Night) while we are here and once a day for about 30 days after we leave. It is two different forms of potassium designed to protect her thyroid from the MiBG. We were woke up this morning at 7am by someone from Surgery saying they were ready for her upstairs to put her Catheter in. Not the best way to wake up but at least it was done early so she didn’t have to wait long to be able to eat.. All of her Doctors and Nurses are talking about her ability to Advocate for herself as she did once they took her back in Surgery. She made it clear she wanted no IV and no oxygen mask near her face. She told them when and how they could do what and they were very accommodating. After that she just kind of laid around in her bed and we cuddled with her as much as possible while we could. The infusion started around 1pm and took about 120 min.
Eden’s Radiation level was 22 initial after the infusion and has to be 7 to be released. This level will be continued to be monitored.
As of Wed evening she is feeling well and eating well but sleeping a lot do to meds to keep her calm.
Thanks for checking in on her and please look below for pictures updated from the trip so far.