Friday, March 25, 2016

CT scans, lung tests, finger pokes and an ER trip

So I'm sitting in an exam room waiting for Abby to come back from her lung tests. She gets to sit in a glass box and breathe a lot into devices. Later today we have A meeting with the dietitian to go over what she can and can't eat during transplant. Then we have a palliative care meeting. And then she meets her child life specialist who helps her process two different procedures before and after they happen. She's doing really well and feeling pretty good considering our week started pretty roughly with lots of nausea after Monday's chemo. We had to go down to the ER at Children's on Tuesday afternoon because she was vomiting blood. They did lots of checking and it was nothing serious, probably just some tears in her esophogus from all the vomiting. She's been doing fine since. She and Mark got stuck in Denver Wednesday because of a surprise blizzard that hit early Wednesday morning. They drove down in it and it took about three hours to get to the hospital for Abby's appointments. When they were all done with the appointments parts of I-25 had been shut down and there were no hotel rooms left so thankfully, Mark was able to stay with a friend's parents who live close by. They took great care of Mark and Abby and we were so thankful! Yesterday we did a lot of CT scans and nuclear medicine blood tests. We had a long neuropsychology appointment as well.  This week is about checking  all of her major organ functioning and everything looks great so far. 

Anna and I came down yesterday as well so that she could have some blood tested and some blood drawn to save and give back to her after the procedure. She also met with a child life specialist to talk about what to expect. She had a history and physical exam also. She was a trooper. She was all geared up for the blood draw and was holding it together pretty well until they came in and said they were going to do a quick finger poke before the needle stick. At that point the tears started flowing and all the nurses were surprised because a finger poke doesn't seem like a big deal. However, Abby has mentioned before how difficult finger pricks can be because they have to squeeze and squeeze to get enough blood out for test. At that point the nurses started talking about how it was a new device and didn't hurt at all and started pricking each other's fingers so that Anna would calm down. She got through it eventually and was able to order some French toast and enjoy that before she went to her next meeting. The other two appointments were just for information and an exam. Although we tried to reassure her there were no more pokes, Anna was skeptical- especially when they started trying to get to know her and ask her about the stuffed animals she had brought. I think she's starting to realize that when they try to get to know you they may eventually poke you with something. Overall a character building day for her right? That's what we tried to remind ourselves when we were collapsed on the couch from emotional and physical exhaustion later that night. 

We have the weekend off and then we do another week of appointments. Thursday Abby will have surgery to get another port put in. Enjoy your Easter weekend. We hope to just enjoy some family downtime, cook a ham, do some Easter egg hunting, and hopefully connect with with the holiday means. 

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