A Long Day

Well Grace and I made it there and back. We didn't end up getting a room at Ronald McDonald West so we had to go across the river to RMH East, which was a little bit of an inconvenience but not as bad as I thought. Nonetheless, it was a nice place to lay my head down for the night, which is pretty much what I did, I think I laid my head down...RMH East is a mansion, btw, compared to the older West house. Of course, Grace slept like a log and I of course did not since I was up trying to pump her up before her fluid cutoffs at 2 and then 4 a.m. Somehow though the clock in our room was all messed up and so when I got to OHSU in the morning thinking it was 7 a.m. I realized it was actually 6 a.m., and then it made sense why I felt like such crap. Instead of waking up at 5 I had woken up at 4 and instead of cutting her off from nursing at 2 I cut her off at 1 a.m. instead. oops. My internal bio clock must not have been working for me. So we were early. I killed time by eating breakfast in the cafeteria and amazingly Grace just sat and watched me patiently even though she had to be starving herself. When we got to Peds Sedation she played and laughed and sucked on all the chairs. No crying. She gave the docs her bashful grin and won both he and the nurse over. After blowing a couple of veins they managed to get the third IV in. I was relieved. The docs comments about her veins were "someone has been here before." Just about all her veins have been used and it's so hard now that we CAN'T use her legs, our options are really limited. I'm always thinking what if they can't find one and we can't get the test done. Oh well, I guess we would get to go home without it. I really liked the doc this time around. I think they knew they messed up last time so they took special precautions to get it right this time. I was convinced they got the message so I didn't tape a note to her legs, but I did bring a note and it was in my purse. I did, however, put pants and socks on her so those areas wouldn't be accessible just in case. Things were much better. She came out of anesthesia quickly and although she was still grouchy for quite a while it was no where near what it was like last time.

So that took awhile and then as soon as we got through that we had to go to have her echo done. I guess they didn't coordinate well and so she could have used sedation for that too. They barely got their images and I had to do a dance to get her to sit still for that. The technician was like "she's crazy." And I'm thinking no she's not, she's just sick of being strapped down and poked. I had her in this lovely pretty pink dress just for Amira and of course she pooped all over it during her echo. The technician was like "I'm out of here" and he left the room while I cleaned up the mess. Then we met with her nephrologist. She hugged and kissed on her. Her creatinine levels are good. She is still on the BP meds though because although her BP's are normal now, they are still at the upper end of normal, so we have to be on those a little while longer. More bloodwork. More poking. More crying. The phlebotomist though was the fastest I have ever seen. He just shot in there and had blood before I could even hold my breath. Thank heavens because I was tired of holding her down by this point. Then, we met with her oncologist. Last appt of the day, I was about ready to crawl on the exam table myself and take a little nappy noo noo.

Well, her MRI came back no mass. Everything looks good. Her doc says she is not out of the woods yet, but everything is looking really good and he doesn't think the tumor is going to come back. I am relieved. I told myself if we got through the first scan all would be good. Then it was the second scan. Now I'm thinking if it isn't back by 9 mos postop then I can rest assured. We'll see. Things are looking good for Grace. She is a fighter for sure. I learned she is a bit loopy and goofy like myself though.

We hope Arianne made it back from SD. Yes, we are still keeping tabs on you. One thing I've learned about nurses and doctors is that doctors make all the decisions but nurses do all the work. I'm convinced I could have been a doctor now. I didn't realize they just walk around with pads of paper in their hands and make decisions (ha). It's called "rounds"....I can totally do that! It's the needles and blood that I can't deal with. No, after seeing all that went on up at the NICU I have a new appreciation for the medical field. We had such great care there. The nurses and doctors were excellent. When you need help, you should hope that the nurses are the ones on top of it though because they do all the detailed work and ours were excellent. One of my favorite doctors was Albert. One day when we were going through all the thick of it and I was particularly depressed at this time, I walked through the doors of the NICU and Albert with his smiling face looked so happy to see us. He said, "It's a big day for Gracie!" I remember being so happy he said that. It ended up not being such a big day for Gracie, but I was glad thinking it might be anyways.

Well, OHSU has sort of a weird "home sweet home" feeling because we spent so much time there so it was nice to visit but I'm glad to be home. We're worn out. Next time, I might have to not be so adventurous and schedule so much in one day. So the picture of Grace is right before we got into the car after our long day. She looks tired, eh? Thank goodness we're done for another 3 months or so.