Yesterday might've been the longest day of my life. I set my alarm for 5:30 - which I ended up sleeping through and we rushed out the door at 6:37 AM (seven minutes after we were supposed to be at the hospital for check in time). We got up to the hospital in pretty good time and they checked us in to Imaging.
Waiting with Grandma before they access her port. So so grateful that we had her there! It would've been so hard to do this on my own and she cut out basically her whole day so she could be there with Ave.
Right before the MRI. This part is the hardest. She's dead asleep and it's so hard walking away from her.
Totally zonked out.
This is the skeletal survey. They make her lay on a hard cold table (and I mean really cold - they have to keep the rooms freezing for the equipment) she has to be completely naked and they are holding her down so she can't move. The last two times we've had these she was practically hysterical - crying, shaking, kicking the nurses.. and they tell you that you can't be in the room because it makes it worse. So I requested this time that they do the survey while she was still sedated. It was sooo much better. She did wake up and cry but not nearly as bad as before.
After the skeletal survey they took us back to recovery so that she could wake up and eat some things. She is was so sweet while she was waking up. She wanted me to hold her the whole time and she kept talking about Mike and Sully from Monster's Inc!
We had a few hours to kill before clinic so we went to the cafeteria and let Avery sleep a little before we got some lunch. My sweet sister came and met us to see Avery and it made Ave so happy to see her.
While in clinic the doctor came to talk to us about Avery's test results. And we got good news!! Her tumor is continuing to shrink and her bone is still healing! We are so grateful that she has continued to respond to the treatment she's on. After getting her chemo we got to go home at about 2:30.
The rest of the day Avery was really subdued and just wanted to lay on the couch. She wasn't eating much but she was drinking and the nurses that discharged us after the MRI said that if she didn't feel like eating it was alright because they gave her so much fluid.
Around 5:30 I sat down by her and she felt really really hot - she had a fever of 102! Standard protocol when you have a port is that you have to go to the ER if you have a fever over 100.4 ever since the port is an infection risk. I couldn't believe that we had to go back up the hospital after spending 8 hours there earlier.
Telling Ave we had to go back up to the hospital sucked. She already felt like crap and just cried and kept saying it's not fair! It kind of broke my heart to hear her say that. It's basically the most unfair thing that a two year old has to go through all of this crap. I so wish I could do it for her. Plus after having tape on her chest all day from the port her skin was already really irritated and red.
We got checked in right away at the ER because they were expecting us and the nurses came in to access her port. It was horrible because anywhere else in the hospital they don't really know what they are doing when it comes to accessing. They just don't do it as often as in clinic. The nurse made Avery lay down (which she really hates because she feels like she's being held down) and then when she put the tape on she put it on way too tight. So they had to take the tape off her already irritated skin and redo it. They had to take a blood draw from her port and for some reason they could flush her port but it wouldn't draw. We had to hold her down for a good half hour while they moved around the needle to try and get it to draw. It was so awful. Luckily after getting a lot of fluid and some tylenol her fever came down and her labs looked good so we were able to go home around 11:00.
Good news is that Avery is doing much better today. No sign of a fever and she is running around and playing like usual. This girl is such a fighter!
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